Community News Blog

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Community News Blog

This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.

Latest Entries
  • Get active, feel good: guest bloggers wanted to trial our new DVD

    Running shoe

    This summer, Macmillan will be releasing a new exercise DVD in partnership with Boots, and we’re looking for guest bloggers to test them out for us and let the Community know what they think.

    We’re working with Boots to spread the word that physical activity can be great for people living with cancer. It’s not about spending hours in the gym, but keeping active at an appropriate level during and after cancer treatment can boost energy and help to reduce the impact of side effects. 

    Get Active, Feel Good is specifically developed for people living with or after cancer. There are two to three different levels for each activity, so you can find a level to suit you. The activities are set to music and led by cancer fitness expert Dr Anna Campbell.

    It will be available for free in store, from Boots Macmillan Information Pharmacists who have undergone training about physical activity and cancer, or online from

    Testers wanted 

    We’re looking for Online Community members willing to try out a sneak preview of the DVDs before they are released, and then write a blog post to let us know how you found it.

    Ideally, you’ll be someone who isn’t very active at the moment, and you’d be willing to try out the DVD for four weeks. After that, you’d just need to email me the text of your blog and I’d publish it as a guest blog right here on the Community News Blog.

    If you’re interested in taking part, please email me on, with a few details about where you are on your cancer journey.

    Stay safe

    Before you start using the DVD, please read the safety booklet that comes with it, and check with your doctor, nurse or physiotherapist if you are unsure what activities are safe for you.

  • Duathlon webchat transcript

    Catriona Morrison, triathlete and duathlete

    On Thursday 19 July, we hosted a live webchat with Great British duathlete and Macmillan Supporter Catriona Morrison. Cat has represented Great Britain in both duathlons and triathlons and has brought home lots of medals, including a gold medal at the 2010 Duathlon World Championships in Edinburgh.

    Lots of people came along to ask questions, including many fundraisers planning to do the London Duathlon for Macmillan. Cat answered questions on triathlons, duathlons and Ironman competitions, sharing her tips on training, equipment and mental preparation.

    Many thanks to Cat for her answers, and good luck to all our London duathlon participants!

    You can read more duathlon tips from Cat on our website, or visit her own website at

    I'm signed up for the London Duathlon in September and I’m in hearing any tips. It's my first one so mostly I'm wondering how hard to push the initial run.

    You should run so that you are comfortable, probably not as fast as in an all-out running race. You need to find a pace where you know that you have more in the tank.

    Makes sense. Is the course quite flat?

    I’m not too sure but, given the location, I imagine that it is flat.

    Someone told me that cycling can actually be bad for you if you're a runner - unless you train the right way. Is this true?

    No at all; cycling provides excellent cross-training benefits and can enhance your running. You just need to make sure that you have a well-fitting bike to start with!

    How soon before a race can you eat? For example, if it starts in the morning, would it still be OK to have breakfast?

    I would have breakfast in the morning - try this out in training. Have your normal breakkie and then see how long it feels for you to be good for exercise. You should always make sure that you have enough energy in the tank - even if you have to get up earlier!

    What breakfast would you typically have before a race?

    I tend to have toast and a banana and some honey; coffee and a sports drink. Everyone is different and this is why you should try things out in training.

    I've been trawling the internet for duathlon training plans for a beginner.  I'm doing the Classic 55k distance at the London Duathlon.  Can you recommend any websites that might be a good place to look? 

    There are lots of good resources - tri247 often has links and the publication Triathlon 220 has good links too. 

    I just wondered if there is an essential equipment/clothing that you couldn't do without for your training and also for the events?

    I can't live without a good pair of cycling shorts to protect my bum in training. For the race, a good pair of tri shorts that you can run and cycle in are great. And a rain jacket this summer...

    I have a hybrid bike, so nothing like a top-of-the-range road bike. Am I putting myself at a big disadvantage by using it for my first triathlon? Should I get a sleeker model?

    I was just going to ask something similar! I did my first tri last year with a mountain bike and felt like every man and his dog was whizzing by on super sleek bikes.

    No bling required! Just a bike that is roadworthy and fits you - if you enjoy the experience you can always think about pimping up your ride later. The best investment is some "slick" non knobbly tires - these will make you go faster! Slicks are a good way of increasing speed for little investment - ask a bike shop, they’ll be able to help.

    Would you also recommend a service before a race?

    Yes, you want to be safe and to be safe for the others in the race too - and to prevent a "mechanical" that would out a dampener on your day.

    Any tips for readying the muscles groups for the transition?

    Move the bike into an easier gear a few minutes before transition to get some more blood flowing and the legs moving faster.

    Any tips to reduce the wobbly legs effect after the transition?

    I'm afraid wobbly legs happen to the very best - the only way to get better is to do some bike-running in training. You may not get better but you will get used to the feeling.

    So both disciplines in the same training session as often as possible?

    Yes, both disciplines in same training session - at least once per week.

    I would love to know how to get more confidence on the bike with descents; I slow down too much.

    Practice makes perfect for confidence on the bike - I think that asking a more skilled friend to let you follow them on the bike and learn by doing is a great way to get better.

    Do you spend an equal amount of time training for running and cycling? 

    I spend more time cycling at the moment, for Ironman, but for duathlon, I also prefer to spend a little more time on the bike, as I can do more without being so beaten as I would get in running.

    A less technical question - what has been your favourite course or location?

    I love any course with hills - I loved triathlon Alpe d’Huez last year and St Croix, where there is a mighty steep hill about half way through the bike section. 

    Tri suits? Are they really beneficial to wear? I'm too scared to even try one because of what I might look like!

    The thing is that everyone goes through the same thing with the tri suit. I would say have a good pair of shorts with a light pad and a close-fitting top. Only invest in a tri suit if you start to take the sport more seriously.

    Is there any other form of exercise that you would recommend to help prepare for a duathlon that doesn't involve running or cycling?  I'm just wondering whether swimming or Pilates would be beneficial to help mix up training. I'm already getting a bit bored of continuously running/cycling and there's still a long way to go!

    Mixing training is always good to prevent injury. Pilates is good for injury prevention, too, and swimming for cardio benefit.  I also use the cross trainer in the gym for a good cardio workout without pounding the legs.

    Do you have a preference over triathlons and duathlons?

    I like them both, although I have to say that I like any event where I am successful! So it depends when you ask me... 

    In a triathlon, do you just pull your riding shorts over wet swimmers and let the wind dry you down?

    I wear a suit that I can run and swim in - so no change required. You can pull on your shorts - it can be tricky when you are wet. The key is that you are happy and confident in what you are wearing.

    I have done a triathlon (Olympic) before and marathons; I feel it's time to attempt an Ironman but I fear the training will take over my life. Realistically, does it?

    The training for Ironman does take more time away from your "life" but you may develop a new kind of social life through Ironman. Like everything, keeping to good schedules will help maintain work-life balance.

    Would it be advisable to try a half Ironman first and build up, or just go for it and do a full Ironman? There's certainly a lot more half Ironman events out there now.

    I have seen people thrive on the challenge of attempting Ironman from not much triathlon experience, but also there are those that gradually build up. The truth is that, as long as the training is in the bank, you can do it either way - some like to take the plunge!

    Could you remind us what the Ironman distance is?

    It’s a 3.8km swim, an 180km bike ride, a marathon, and a long sleep and a beer afterwards!

    Yikes! How do you keep going mentally with all that lot?

    It’s all about focusing on the moment and what you can do in that moment - the trick is one step at a time and not to fixate on how far away the finish line is. 

    I am doing a duathlon in September. Any tips for completing the 10k run?

    Make sure that you have at least a couple of training runs at 10k distance in the bag already. I like to attack the run in bite size stages, and tick off the kilometres as I go. Start conservatively and, if you feel strong, build the pace up as you go.

    The swimming element I find the hardest. I'm a weak swimmer - do you have tips of getting stronger?

    Technique, technique, technique. Find a lesson or a coach or a friend to help you with how you swim  - this will give you the best return on training investment.

    What’s your next race?

    I would love to be racing, but I have had an awful 2012 for various reasons! I have bilateral Achilles problems, which look like I may be racing for surgery in the near future.

    When the going gets really tough, do you have any kind of motivational mottos you say to yourself in your head to help you dig deep and keep going?

    My mantra is: fitter, faster, stronger. I also like to think of a time in a previous training session or race where I have pushed further than I though possible and this pushes me on.

    Would you recommend joining a tri club?

    I love my tri club – organised, structured sessions; great people; misery loves company; and like-minded individuals. Its' a hot pot of ideas and action and advice - so yes! Join a club.

    Who are your top tips for the Olympic triathlon?

    Helen Jenkins and Nicola Spirig - and then the beauty of the Olympics is that ANYTHING can happen!

    Do you have rest days? How important are they to have in your training?

    Rest days very important. Physically, to allow training to sink in and your body to adapt to training, and also, mentally, to have a break. Generally I have a down day every week with light training and a full day off every two weeks. 

    Do you train to music?  If you do, what sort of music would you recommend listening to whilst running?

    I have a pretty crap selection of music! There was a program on the BBC not so long ago that said that 120-140 beats per minute was the way to go. Mine is cheesy chart music (too young, really, for my age) - a good beat that you can loose yourself in! I bought a Glee workout album - very bad but fun to exercise to!

    What is your best song to train to? 

    Florence and the Machine, Dog Days - I love that.

    How do you stop training from becoming boring and monotonous?

    Training can sometimes be boring. I try to change my routes as often as possible and I try to train with others so that there is some more motivation and a social interaction - even if it is at the end of the session as you are too busy trying to breathe during! 

    I’m doing the ultra distance in London. I am a better runner than biker. Should I give everything on the first run (20k)to get good start on the bike, or save a bit?

    Save a bit, as, if you use up too much on the run, your bike will suffer. The bike is the longer proportionally so you need to feel stronger there.

    The bike course is 7 laps of 11k approx. Could you treat every second lap as time trial? 

    Your body will fare better if you are more even paced - bursts of speed will wear you down more. Even stephens is the best way to go and, if you can, build gradually through the bike section if you feel strong. 

    I find pacing myself through the different disciplines hard, too.

    Pacing is a matter of practice. You get to know just how hard you can push one discipoine without endangering the other - its a bit of give and take

    What surface is it best to run on when training? I'd love to just use parks/tracks but usually end up pounding pavements.

    All surfaces are good, as variety will help your proprioception - ability not to fall over! And variety also means strong muscles. However, it is good to find tracks and grass to run on, and try to limit too much pavement-pounding where possible.

    Does it excite you how popular triathlons and duathlons are becoming? It really is an addictive sport.

    It's great to see people embracing any sport - especially kids. But everyone loves their own sport and I think that it is fab to see tri getting some media coverage and being a really good way to raise awareness of charities.

    Do you use protein shakes?

    I do use protein shakes but, as a rule, only after long or intense workouts where I may not be able to have a good meal straight afterwards. A post-training snack with carbs and protein are good for energy replacement and recovery. If you can't afford expensive supplements, chocolate milk is a great option.

    What about those gel sachets? Would you use them?

    Yes gels are good for providing energy in a convenient form during training and racing, but it can be a personal preference. Also, you need to try these things in training before you race with them.

    I'm taking part in a team triathlon with Macmillan. Have you got any tips for a speedy handover?

    Have a chat to your team mates beforehand - if you can, have a look at the handover area, perhaps pick a spot and have a practice. In the actual race, don't get caught up in the adrenaline - slow things down to 80% and do them right and you will not make time costly mistakes 

    I’m also taking part in the team triathlon. With the swim, where would you position yourself when entering the water? 

    Position in the swim very much depends on your ability and confidence as a swimmer. If you are happy to be in the mix, in the turbulence, etc then get in the middle - you may get a good group to swim with and a faster time. If you are not so confident, position yourself at the side so that you have clear water.

    If you could give one piece of advice to Team Macmillan what would it be? 

    Enjoy the moment – there’s nothing quite like crossing the line and having all your hard work come to fruition.

    If you’ve been inspired to sign up for a challenge event for Macmillan, find more triathlon and duathlon events on our website.

  • Cancer and your sex life

    Couple at cafe

    Have you seen the Macmillan research that’s been in the news this week about cancer and sex

    A survey of women who’ve had breast cancer showed that a third of all women, and half of those under 55, have sex less often as a result of their cancer. 

    And this isn’t a problem restricted only to those with breast cancer, or to women. Sexual difficulties are one of the most common long-term consequences of cancer, affecting around 35,000 people in the UK. 

    Gietta Gudge, 48, a breast cancer patient from Northamptonshire, says: “Breast cancer left my sex life in tatters. I used to have sex with my husband every day, but after cancer, I was sore from the operation and my treatment caused menopausal symptoms that made sex painful.

    “Radiotherapy burned my skin which added to the problem and chemotherapy made me feel so sick and tired that sex was the last thing on my mind.” 

    Cancer can have a huge impact, both physically and emotionally, so it’s not surprising that this can affect people’s sex lives. However, many people find sex a difficult topic to talk about, so they might not be getting the help and support that they need. 

    Jennifer’s top tips 

    Jennifer Gorrie, a Macmillan cancer information nurse has these tips: 

    -       Try wearing a soft camisole top, bra, or other clothing to bed to boost your confidence if you are self-conscious about a mastectomy or scarring

    -       You can be intimate with your partner without having sex. Hold hands, kiss, hug and talk to each other

    -       If fatigue is an issue, it might help to have sex in the morning when you are feeling more energetic after a night’s sleep

    -       If arousal is difficult, get your partner to focus on other sensitive areas like your neck, your bum and inner thighs

    -       Experiment with which positions are most comfortable for you. For example, you may find it easier to have sex side by side, or change who is on top

    -       Talk to your partner about how the cancer has made you feel and how it has affected your sex life

    -       Talk to your GP or call the free Macmillan Support Line on 0808 808 00 00. 

    Whether you are male or female, have a partner or are single, and whatever your sexual orientation, cancer doesn’t have to mean the end of your sex life. Read more tips and information about cancer and sexuality or order our free booklet.

  • The side effects of cancer treatment: Answers


    Q: I've just finished pelvic radiotherapy, and have internal radiotherapy to do this week.  What can I do to help the recovery process?  My MDT doesn't give me any clues!

    A: Following treatment for cancer you're likely to feel relieved and keen to get back to normal. However recovering  from any cancer treatment can take time and is usually a gradual process.

    One of the side effects of pelvic radiotherapy can be fatigue. So it's important to get plenty of rest and not to expect too much of yourself. Just be guided by how you feel. Our information on coping with fatigue may be helpful for you at this time. 

    Additionally eating well  will help you regain strength and gentle exercise can help boost self esteem and sense of wellbeing.

    Best wishes


    Cancer Information Nurse Specialist

    Q: I'm 32 and was diagnosed last November with non-h lymphoma. I had 6 months of chemotherapy. I found this hard going but I only had trouble towards the end of my treatment when my temp kept getting high due to infections. I get aching joints, especially first thing in the morning and if I have been sat for a while. My kids keep me active though, they are 6 and 3. Macmillan have been fantastic in letting us know about financial support and things like that as my partner had to stop working to look after me and the kids. I have it in my bone marrow so don't really know what will happen in the future.

    A: I'm happy to read that Macmillan was a good source of support for you and your family. I can appreciate that the uncertainty which you're facing at the moment can be hard to cope with.

    Many people find it a struggle to get back to some sort of "normality" after they've had such intense treatment and are at the start of their recovery.

    You might find it helpful to read Macmillan's information on exercise after treatment, which may help to relieve some of the joint pain (though it sounds as if the kids are setting up their own fitness programme for you!). It's also well worth mentioning any problems to your specialist when you attend for any follow-up appointments.

    Best wishes


    Cancer Information Nurse Specialist

    Q: I had breast removal and reconstruction in 1999. The silicon implant is leaking causing a metallic taste in my mouth and burning feet. I also have terrible pains 24 hrs a day in my legs, could this be bone cancer?

    A: I'm sorry to read about the problems you're having.

    It's difficult to say whether the pains you describe are related to the silicone implant leaking, but you may find it helpful to read about possible complications when silicone implants rupture. Your breast surgeon is the best person to ask about removing and replacing the ruptured implant.

     Anyone who has had a previous cancer diagnosis worries that any new pains might be the cancer coming back. It's understandable you're worried that the next stop might be secondary bone cancer.  But this is not necessarily the case.    

    Many women with breast cancer have hormone therapy as part of their breast cancer treatment and some of these drugs can cause bone pain. If this is relevant to your situation, you can read our information about hormone treatments for breast cancer

    Also you might be interested to know there is this research being done into bone and joint pain as many women complain of this following treatment for breast cancer.

    We'd strongly encourage you to speak to your doctor about the leg pain to try and find out the cause.

    Q: Since I had my chemo and radiotherapy and brachytheraphy a year and a half ago after cervical cancer, I have had bad bone and joint pain which is preventing me from sleeping. Is this normal, and will it go away, as its really doing my head in, and painkillers don't work?

    A: Unfortunately, sometimes radiotherapy to the pelvic area damages the pelvic bones. This may cause pain and difficulty carrying out daily activities. Painkillers and the advice of a physiotherapist or occupational therapist can help. There are also drugs that can be used to strengthen the bone. You can read more about treatment for this problem here.

    Possibly your pain is caused by this type of damage. It is difficult to say how long your symptoms will last if this is the case. However, please talk to your GP or specialist about whether any of these treatments are right for you. In particular, there are different types of painkillers. It is important to know how to use them effectively.

    Q: I am 3.5 years post treatment for Nasopharyngeal Cancer and I still have little to no saliva. Will this ever improve or is this it now? All of the Doctors seem to have a different timescale which ranges up to 5 years!

    Over the past year I have also developed a dripping nose which can be very embarrassing as I very seldom feel it coming! Is this normal?

    Why do some Doctors never warn us of forthcoming side effects? It would save a lot of anxiety and stress?

    A: The treatment you have can affect the salivary gland production and this can often take from 6 months or longer to return to normal. Sometimes the treatment may give you a permanent dry mouth. There is more information here that may help.

    A nasal drip can be what is called a late side effect of radiotherapy. It may be that there is no nasal hair left and this can cause a dripping nose. You will find information on nasopharyngeal cancer here.

    It's difficult for even the most experienced specialist to predict exactly which side effects any one person will have after their treatment. But people should be told enough to make an informed consent to go ahead with the treatment being offered.  As more and more people live longer after cancer treatment, more work is now being done to understand and manage some of these late or ongoing side effects of cancer treatments. 

    Q: I finished 6 months of TAC chemo and 4  weeks of radiotherapy last October. I'm not taking any medication at all now as my hormones weren't compatible with the tablets.

    Please can you tell me if all the aches in my limbs are to still do with the treatment? I still have little movement in the arm where I had the nodes removed. I feel more tired and emotional now than I did last year.

    I know the Macmillan nurses are always there for us but its hard when you know there are other poor patients going through treatment, I don't want to disturb the nurses.

    A: I was unsure exactly what your diagnosis is but from the information you have given, I imagine it's a breast cancer you had.

    Tiredness and fatigue can often continue for some time after treatment has finished. Patients often look forward to the time when their treatment ends, but many in fact have a really difficult time emotionally. You can read more about this here.

    It's important to maintain a network of support. Some people find counselling or support groups helpful; speaking to someone else who has had a similar experience can be very supportive. Perhaps having a chat with one of us here on the helpline would help. We could also direct you to what other support might help.

    It's difficult to say what's causing your aching limbs and joints. Again I am unsure what you mean when you say your hormones were not compatible with the tablets. I read you don't want to disturb the nurses but the role of the breast care nurse usually includes supporting patients after treatment has finished and it really would be a good idea to talk through your concerns with them.

    You can also talk to them about your limited range of arm movements; they may recommend some particular exercises for you. Our information about exercise after treatment might help.

    Kind regards


    Cancer Information Nurse Specialist

    Q: I finished chemo in April and am now on Aromasin as I have secondaries in the bone (hips, back and ribs). I am getting pains in the knee and ankles which seem to come and go. Does anyone else suffer like this? I also find that the Zometa can bring on similar pains.

    A: Unfortunately joint pains like these are common side effects of Aromasin.  Mild painkillers can help but you may have to take them regularly to get the full benefit from them. As you can see from our information on Zometa you're right to be thinking it can also cause some aches and pains after it has been given. Once again painkillers can help. If the idea of taking more medicines is a bit off-putting these other methods of pain control may be worth discussing with your doctors. There are a number of everyday ways your friends and family might be able to help too.

    I hope this answer has been helpful. If you have any other questions or concerns please get in touch with us through the forum again. Or you might want to email us directly or call us on 0808 808 0000.

    Best wishes


    Cancer Information Nurse Specialist

    Q: I finished radiotherapy six months ago for prostrate cancer. The tiredness is wearing off but still got problems with bowel control can be fine for a few days, I think I am ok but then get caught out . Any idea how long this is likely to last for?

    A: After treatment for cancer you're likely to feel relieved and keen to get back to normal. Recovering  after cancer treatment can take time and differs from person to person.

    Problems with bowel control can be one of the side effects of pelvic radiotherapy. For some people they can continue to experience some of these side effects long term and it is difficult to say how long they may continue. There are many medicines that can help with these symptoms and other ways of managing things too. It's important to discuss your symptoms with your GP who can refer you on to a specialist for further help if needed.

    Q: I concluded chemo 7th April this year and within a week had phlebitis in my right arm (vein). Confirmed as chemo side effect, the phlebitis infection lump went, although a clear track can still be seen down my arm then tingling/numbness in fingers started. Told this should go within a few weeks. Now nearly 3 months on and still a constant companion although not as acute as initially. Will this ever go and is there anything I can do to reduce symptoms (on bad days my arm cramps)?

    A: Unfortunately phlebitis can happen when having drugs intravenously. It usually resolves shortly after you finish your treatment. But can take longer for some people.

    However it sounds as if the tingling/ numbness may not be phlebitis, but a side effect of your chemotherapy called peripheral neuropathy. This can happen because some chemotherapy drugs can affect nerve endings, usually in the hands and feet.

    Your doctors will be able to confirm whether or not it is peripheral neuropathy caused by the particular chemotherapy drugs you had. If it is peripheral neuropathy, there are some things you can do that may help.

    Best wishes


    Q: Why do I feel so stiff & tired my joints really hurt? I had a breast cancer tumour removed, total lymph clearance, chemo & rads nearly 2 years ago and still feel like s***.

    A: Unfortunately many women experience tiredness and joint pain as a result of their treatment.

    Although it is known that this is a common symptom as yet we do not know exactly why this happens or how long it lasts for.  There is however research being done to find the possible causes, how long it will last and how it can be treated.

     One possible cause for these symptoms is that treatment for breast cancer may cause an early menopause  or that the menopause has occurred naturally.  As oestrogen levels in the body become lower aching joints and stiffness can occur.

    It is thought that having a healthy lifestyle by staying active and eating a well balanced diet might help.  It also may be worthwhile speaking to your G.P about painkillers that you can take to reduce this pain.  Some women also feel that complimentary therapies may also help.

    Q: I was diagnosed with primary breast cancer April 2010. I had treatment; lumpectomy, mastectomy, chemo (FEC) radiotherapy. All were done by April 2011.

    I managed the treatment really well but since commencing Tamoxifen in Jan 2011 I have had a variety of side effects but the main issue is bone and joint pain. My oncologist changed the drug regime to arimidex in May 2011 to no avail. The pain is truly debilitating, I was always very active person but cannot get past the pain my question is - Is this it for the next five years? I take voltarol 50mg 3 times daily with little effect.

    A: Painful joints and bone pain can be a side effect of Arimidex  (Anastrozole) affecting about one in every ten women. Some women find it improves through the course of their treatment. For others it may worsen. Unfortunately I cannot comment how this may be for you over the next five years. There is, however, research ongoing to try and find possible causes, how long it may last and the best way to treat this. We do not have the results of this as yet.

    In the meantime as Voltarol is not helping you, there are other types of painkillers the doctor could prescribe that might help you more. There are also other methods of pain control which can be used on their own or in combination with painkillers.  Heat and cold methods may also be useful.

    Best Wishes


    Cancer Information Nurse Specialist

    Q: I am 44 and having chemo (gemcitabine) via iv following a whipples for pancreatic cancer. I have not had a period since 13 April prior to starting the treatment (not pregnant and suffering hot flushes) and so I wonder if this is most likely to be chemo-induced "menopause" in which case my periods are likely to come back or whether this is a natural process due to my age. Is there anyway to find out or is it a case of just waiting to see what happens?

    A: It is fairly common for women to find that their periods may become irregular or stop altogether when having chemotherapy. It is also common to find that you may have some menopausal symptoms such as hot flushes, dry skin and vaginal dryness. For some women, their periods may return after chemotherapy is finished but this can sometimes take several months.  The younger you are the more likely you are to start your periods again.

    If a woman's periods have not returned within a year of completing chemotherapy it can usually be assumed that they have become post menopausal as a result of their treatment. Blood tests can be done to measure your hormone levels to help determine if you are menopausal or not.

    We have information on coping with menopausal symptoms in the breast cancer section of our website. This information is also helpful for women who are having these symptoms as a result of treatment for other cancers. Even though you are not having periods it is still important to use contraception while having chemotherapy. If a woman becomes pregnant during or shortly after having chemotherapy there is a chance the foetus may be harmed. Men who are having chemotherapy should also take care to not father a child for the same reasons.

    Q: I finished my course of chemo about 6 weeks ago. I was on Oxaliyplatin and was ok until ten days ago. I have now got really numb and slightly sore fingertips and sometimes it affects my feet as well. Its so annoying and I don't know what to take, if anything, to relieve it a bit . I've spoken to my oncologist and she just said it might go eventually! Would be grateful for any help at all thank

    A: Good to read that you've finished your treatment - but it sounds like you're now experiencing one of the possible side effects of Oxaliplatin.  The numbness and pain in your fingers and feet are unfortunately typical signs of some damage to the nerve endings called - peripheral neuropathy

    It is a possible side effect of some types of chemotherapy.

    You can find some ideas on how to help reduce your discomfort here. I hope this helps you.

    Sometimes symptoms improve over a few weeks - but sometimes it can take several months before it subsides. Nerves are very slow growing cells and it can take a long time for them to heal. Very occasionally people are left with some degree ongoing discomfort or numbness because of the effect on the nerve endings.

    Best wishes


    Q: I finished radiotherapy for breast cancer on 29th January 2010.  However, a year and a half later and my skin is still sore.  I still cannot use smelly soap, deodorant etc, and it is still quite sensitive to touch.  I've tried various creams (aqueous, dermol, etc) with no real results.

    I'm on Tamoxifen (and in my mid fifties).  I'm experiencing endless hot flushes and some weight gain.  The flushes come at any time of the day or night. I get them no matter what I drink: water or alcohol doesn't seem to make any difference.  Same with the weight gain, I have become a 'runner' to help me loose some: diet + running and still no results.

    Slightly 'girly' but I have become very conscious of my looks recently.  Looking at my half full cup of bra (had lumpectomy) can bring on the tears.  Not to mention shirt buttons that go 'sideways'.  I tried stuffing my bra with various 'stuffing' but they seem to annoy my skin even more.  Not a priority side effect, I know, but I miss 'dressing up' after a nice smelly bath without flinching as I touch my breast or crying when I see the wayward buttons! (Blouses are fine but with the extra weight...)

    A: Sorry to read about the side effects your still having.

    Radiotherapy can often affect a person's skin during treatment; it may be come sore or itchy. For most people this settles down once treatment has stopped. But, unfortunately for some people this continues.

    Hormonal therapies|, like Tamoxifen often cause menopausal symptoms as a side effect, including flushing and sweating. We have information on managing menopausal symptoms which you may find helpful.

    It's great you've taken up running; exercise after cancer treatment can have a positive effect on your health.  However it's not uncommon to notice weight gain when taking hormonal therapies. You may also find our information on weight management after cancer treatment  useful

    Cancer and its treatment cancer can have an impact on a person body image which can cause a range of emotions. You may find it helpful to talk this through with your breast care nurse, as they can advise you on alternative prosthesis that may be more suitable for you.

    Take care


    Cancer Information Nurse Specialist

    Q: Hi, I'm in middle of TAC chemo (5/6) for breast cancer. My question is why there is nowhere where we can find all the odd little side effects, which you almost think you imagine as no one else has mentioned them. I suffer from watering eyes (which interfere with reading and doing craft work), I've just developed a tinkling noise in one ear, swollen feet, and a very irritable and painful rectum/anus (sorry) in wk 2 after chemo - maybe linked to low white blood count? I also have numb finger tips, but no one talks about the wrinkled fingers and feet soles. I know they don't want to bombard us, but it really would help.

    A: I'm sorry to read you're experiencing a number of problems while having chemo and appreciate it's frustrating when you can't find information.  The trouble is, chemotherapy affects everyone differently and unfortunately it would be impossible to list every potential scenario.

     Our information lists the common and less common side effects. Some of the things you mention are included. For example, swollen ankles (fluid retention) and numb finger tips (peripheral neuropathy). 

    But people sometimes experience other symptoms which may be rarer side effects. Watering eyes is reported by some people on chemotherapy - but is not listed in the drug information.

    It's always important to talk to your health professional at the hospital about any symptoms you have. They can assess your individual situation and may sometimes want to carry out extra tests to clarify the cause of a symptom.

    Unfortunately, sometimes there'll be no clear reason why someone's experiencing a particular symptom. The online community is a good way of sharing your experiences with other people having similar treatment. People having cancer treatment often learn a lot about managing symptoms from each other.

    Take care


    Cancer Information Nurse Specialist

    Q: I have just started a course of B.C.G. treatments after having a tumour removed from my bladder.

    I felt uncomfortable when passing urine and was told to drink plenty of water as this helps, I have had an intense stinging sensation for about 6 weeks (informed G.P and Consultant at recent check-up ) and was told it should clear up, any help would be good.

    A: Drinking plenty of water will help flush the drug through the bladder and can help ease the stinging sensation when passing urine.  It might also be helpful to use simple analgesia such as Paracetamol.

    Just before each treatment though, you should reduce the amount you drink. A fuller bladder will be uncomfortable as you are asked to try not to pass urine for two hours afterwards.

    When the doctors say that it should clear up, often the stinging sensation will subside after 2-3 days.  You are still having the BCG therapy and so you'll likely have these side effects after each dose. 

    But it's important to tell your doctors and nurses if the stinging is continuing so they can make sure there is not infection in the urine. Some people find it helpful to keep a diary which can help when you're explaining to the doctors the symptoms you are having after treatment.

    Kind regards


    Cancer Information Nurse Specialist

    Q: This coming September it will be three years since my month's treatment finished and I still get a rather sore tongue. It was okay before the radiotherapy as the cancer was removed from the mouth floor, but ever since I have suffered with the unpleasant side effects. Last year a biopsy diagnosed mucositis / ulceration due to the radiation damage, but no one can say when it will finally heal. Some days it does seem to be trying, but then it just comes back and I now wonder if this is something I will have to learn to live with ? Any help / suggestions would be most welcome, thank you.

    A: Radiotherapy to the head and neck can cause the lining of the mouth and tongue to become very sore, and small ulcers may form. This is called mucositis and can be very painful. Usually this is a short -term side effect lasting up to six weeks after treatment, but some people can develop long- term problems. We have information on treating mucositis  and tips on mouth care which may be help with your symptoms.

    Some clinical trials have shown that hyperbaric oxygen therapy may be useful to treat long term tissue damage caused by head and neck radiotherapy, although more research is required. You may wish to discuss this treatment with your oncologist.



    Cancer Information Nurse Specialist

    Q: How do I get over the worry that my cancer will come back? It's driving me mad, I can't stop thinking about it, I'm so paranoid.

    A; A diagnosis of cancer can bring many frightening emotions with it, even if treatment is successful and the doctors are very hopeful that the cancer will not return.  Many people find they are still worried about their cancer coming back.  For some these feelings are overwhelming.

    Some people find it useful to contact one of our information and support centres, some of which have counsellors.  Some people find talking things through with someone trained to listen helpful. By clicking on how we can help  you could use this to find the nearest local information and support centre.  Some of these centres also have access to complementary therapies which you may like to try.  Alternatively you could contact your GP who may be able to refer you for counselling or give you some contact numbers to try.

    The important thing to remember is that you can talk to us.  We are there is help people especially if they are having a tough time or if you just want to talk things through with someone.  

    Please note that our nurses won't be able to answer any more questions on this subject via the Online Community. If you would like more information, please contact our Support Line on 0808 808 0000 weekdays between 9am-8pm. You can also email a nurse via our online form.

     Although we make every effort to ensure accuracy, Macmillan Cancer Support cannot accept liability for this information, or for third-party information such as other websites to which we link.  If you are concerned about your health you should always consult your doctor.


  • Prostate cancer webchat - transcript

    Jennifer Gorrie and John Newlands, Cancer Information Nurse Specialists

    This month is Prostate Cancer Awareness Month and, earlier this week, we hosted a live prostate cancer webchat with Jennifer Gorrie and John Newlands, specialist nurses from the Macmillan Support Line. 

    Prostate cancer is the most common type of cancer in men in the UK. It generally affects men over 50 and is rare in younger men. Jennifer and John answered questions on topics such as symptoms, diagnosis, PSA tests, and living with prostate cancer.

    If you’ve got a question, and would like to speak to a nurse like Jennifer or John, you can call for free on 0808 808 0000 (Monday-Friday, 9am-8pm).

    We also have a prostate cancer group here on the Online Community, where you can share experiences and get support from others affected by prostate cancer. 

    What are the early symptoms of prostate cancer and when should a man visit his GP? 

    Jennifer: The symptoms of prostate cancer include difficulty passing urine, passing urine more frequently than usual, especially at night, pain when passing urine and blood in the urine (this is not common). However, these symptoms can also be caused by an enlarged prostate and do not necessarily mean cancer. I would suggest that if a man experiences any of these symptoms, he should visit his GP to have them checked out.

    You can read more about the symptoms of prostate cancer on our website. 

    If you have had a PSA blood test done and it’s ok, would you be worried if someone has to go to the toilet quite a lot. Finds it really hard to hold the urine, they could almost wet themselves.

    John: I would recommend this person goes to see his GP. It's possible he might have an infection and, in that case, he would benefit from getting antibiotics as soon as possible. 

    As members of the Online Community prostate cancer group, we see a lot of men asking for basic information, so the medical profession is doing a bad job at informing new patients. Can Macmillan do more to promote awareness in medical profession of the needs of newly diagnosed patients, telling them where to go for information? Could all consultants be supplied with the Macmillan booklets on PCa, to hand out to newly diagnosed patients? 

    Jennifer: All our publications for are available to health care professionals through be.Macmillan. We also have online courses for professionals available through Learn Zone

    We can also feed this comment back to the team who produce our information booklets. 

    I have recently been changed from Decapeptyl to Prostap, having been on decap for 18 months. The side effects of prostap seem a lot worse, ie more intense hot flushes and increased breast development. Is this usual? The GP's comment was: "It shows it’s working".

    John: Interesting comment and one I hear a lot of on calls to our Support Line. Essentially these drugs all do the same thing, by suppressing testosterone, and so should have similar side effect profiles, but some men notice a difference when they change over – essentially, though, the treatment is just as effective. 

    We have a page on our website about prostate cancer and hormonal side effects, which I think could be helpful.

    Is there any connection between erectile dysfunction and prostate cancer? 

    Jennifer: Erectile dysfunction does not increase your risk of prostate cancer. But it is a common side effect of many treatments. 

    We have some information on our website about prostate cancer and erectile dysfunction, which you might find helpful. 

    What is the best age for a man to get his prostate checked? 

    Jennifer: There is no screening programme for prostate cancer in the UK. If you have symptoms at any age you should visit your GP to have a PSA check. Read more about the symptoms of prostate cancer

    We have some info on the PSA test including the pros and cons. It might also shed some light on why there is no screening for prostate cancer. You should be aware of the symptoms, but know that they can be caused by other things too. 

    How do you find out when new drugs become available? 

    John: The best thing to do is keep an eye on Macmillan's website! Our section on treatment for prostate cancer will tell you about accepted drugs, and our page on current research, will tell you about drugs under development. 

    The NHS web site does a very good 'behind the headlines' section, which deals sensibly with some of the more sensational media stories. 

    Cancer Research UK also have a trials section that tells you about new prostate drugs undergoing investigation.

    What routine blood tests should men on hormone treatment have? I have different GP’s who seem to differ: PSA, alkaline phosphate, testosterone, sodium, potassium, urea, creatine kinase, alanine transaminase , bilirubin, albumin, calcium, HB, glucose, fasting glucose, total cholesterol. For example, one GP said I don’t need the glucose check, but diabetes is a clearly stated possible side effect of hormone therapy. 

    Jennifer: It would be helpful if you could give us a call on the free Macmillan Support Line (0808 808 0000, Monday-Friday, 9am-8pm), and we can discuss these different tests in more detail. 

    My husband has been recently diagnosed with adenocarcinoma prostate, Gleason 3+3, PSA 4.9, prostate volume 33ml (1 core, 2% left side). He was advised to go under "active surveillance". I almost feel that we are waiting for something terrible to happen, before any treatment is advised. We have looked into HIFU trials at University College London Hospitals, but we’ve done this ourselves, really. Should we wait and see, so to speak, or do something now? 

    Jennifer: For very early prostate cancer, active surveillance has the advantage of not having any side effects and is a helpful option for early, non-aggressive prostate cancer.

    But what if it becomes aggressive cancer in the meantime? Then we’ll wish we'd have done something in this early stage. There's no going back if things get worse. Can it become aggressive cancer in the meantime? 

    Jennifer: The gleeson grade of 3+3 is a non aggressive cancer. With active surveillance, where you are having PSA checked 3-6 monthly any rise in PSA would alert the doctor of any change in his prostate cancer, and radiotherapy or surgery could be offered at that point.

    Active surveillance can be difficult, but there are advantages. We have some useful information about active surveillance, including the advantages and disadvantages, on our website. 

    But I’m still not sure whether the non-aggressive cancer can, in the end, turn into an aggressive form of cancer. Could it do that? 

    Jennifer: Yes it could, and that is why the PSA is checked frequently. Also, he will have biopsy yearly to look at the cells in the prostate. 

    You sound as though you are uncomfortable with the idea of active surveillance, so it might help you to talk to the specialist again, or give us a call on the helpline (0808 808 0000). 

    'Active surveillance' seems like sitting back with your diagnosis and not quite ignoring what you have, but doing very little. I think with most cancers, if caught early and treated quickly, then a full recovery is more successful, but it looks like prostate cancer is different. If caught early, then 'active surveillance' is ordered, wait and see, so to speak, it's very worrying. 

    John: I think lots of people are worried about the prospect of having a prostate cancer and not having immediate treatment. However, treatment to early slow-growing cancer can do more harm than good. A real research priority is in sorting out the 'tigers' from the 'pussy cats' in early prostate cancer so that men get the best care without treatment that they may not need. 

    My husband has been accepted for HIFU trials at UCLH. I don't want to wait to see if ours is a 'tiger' and not a 'pussy cat'. It's just not knowing whether it's the right way to go or not. 

    John: I think trials like this one are the way that we will answer the problem. HIFU does seem to be a way of reducing side effects and providing effective control of the cancer - but only time and trials will tell. 

    We have some information on our website about coping with uncertainty

    I have a question about my other half. He hasn't had sex for a while and then when he does, post ejaculation he complains of discomfort, almost being painful. I’m wondering whether it could be prostate-related? 

    John: Any discomfort after sex should be reported to his doctor - if he hasn’t been diagnosed with prostate cancer, then this could be due to other conditions. If he has had treatment for prostate cancer, it could be a long-term side effect. 

    My dad is nearly 82 and just diagnosed with stage 9 prostate cancer. He has been offered hormones and 30 sessions of radiotherapy. It hasn't spread, but why not surgery to remove it? What is your opinion and advice, please? 

    Jennifer: The treatment for a gentleman with an aggressive prostate cancer is generally radiotherapy and hormone therapy. This is because, if surgery was done, there is a likelihood that there may be some cancer left over in the local area. 

    Surgery can have a number of side effects. There is a high risk of erectile dysfunction, and also risks of urinary incontinence after surgery. 

    What are the side effects of the 30 sessions of radiotherapy? 

    Jennifer: The common side effects of prostate radiotherapy are passing urine more often, diarrhoea, fatigue, and sometimes your skin can get sore, but the staff will advise you on skin care. 

    We have some more information about the side effects of radiotherapy on our website.

    My husband has recently been diagnosed with prostate cancer. He has a Gleason score of 7 3+4, PSA 23. We've seen the oncologist, who has put their case forward for radiotherapy treatment, but he doesn't see the surgeon until 8 April for advice on surgery. Needless to say, another month is a long to wait to discuss what options are the best for him. Is it normal for everything to be so slow-moving?

    John: It's important to stress that early prostate cancer is a slow-growing disease, and a few weeks to get the right choice of treatment is acceptable - getting a surgical and oncology opinion in early prostate cancer is well worth a short delay in treatment.

    I understand that early prostate cancer is slow-growing, but at which stage does it become aggressive? I thought a Gleason of 7 was moderately aggressive?

    John: Gleason 7 is intermediate - so not low risk and not high. Other factors, like the size of the tumour, its stage and the PSA are also brought in to make a decision about treatment 

    Often the decision to use radiotherapy rather than surgery is based on the risks that surgery could present to someone that has other health problems - that's often how the decision is made. Not so much on the Gleason score of the cancer. 

    It seems that the choice of treatment has been left to my husband to decide. However, having been told he has cancer, two months down the line he still hasn't got all the answers he needs to make that decision. I don't think his care team realise the mental anguish of not knowing all the facts. We've tried to get referred for a second opinion, but we can't do that until he's seen his surgeon - it all seems pretty unfair. 

    John: The emotional impact can be huge for all those around the person with cancer. Have you thought about taking a look at the Online Community? Sometimes it can help to share what you're going through with others. We have a prostate cancer group and also a space for carers, which I hope you'll find helpful. 

    We also have some information on our website about coping with uncertainty

    I will start on Abiraterone shortly. Is there any treatment available when/if that stops working? 

    John: Abiraterone is usually given on the NHS in the UK after chemotherapy. If the cancer isn't controlled by Abiraterone, there are still options in terms of symptom control and you should discuss this with your doctor. 

    We have some more information about Abiraterone on our website. 

    Why does it take so long from first being diagnosed to eventually getting treatment? I was diagnosed in September 2012 and I just got hormone tablets five days ago. 

    John: That does seem quite long - doctors have to be sure of the stage and grade of the prostate cancer so after a biopsy, investigations such as CT, bone scan, MRI are often required. I'd say 6 months is a long time to get to treatment, though. 

    You might want to consider contacting your local Patient Advise and Liaison Service.

    My habits have changed without conscious decision, ie I don't read any more (I used to read a lot) and I don't drink anymore. Is this a normal side effect? 

    Jennifer: Fatigue is a very common side effect – perhaps these changes could be related to fatigue or to the emotional effects of cancer

    It might help you to call us and talk this through with one of the nurses on 0808 808 0000. You might also find it helpful to consider complementary therapies

    I was diagnosed with a PSA reading of 9141 in November 2012, it’s now 98. I had palliative radiotherapy and I’m now on hormone therapy only. Will the hormone therapy reduce the sometimes severe bone pain? I've had one injection so far of prostap and I have a lot of pain medication.

    Jennifer: Is the pain worse since having your prostap? If so, this may be something called tumour flare, and this should die down.

    We have lots of information about managing and coping with pain, which you may find helpful.

    What could my husband take for tiredness and hot flushes with decapeptyl without interfering with it? 

    John: Prostate Cancer UK have information on complementary therapies that can be used for hot flashes in their Living with Hormone Therapy factsheet - I'd check that out. Also the Memorial Sloan Kettering Hospital have good information on herbs and botanicals on their web site. You could check out our Complementary Therapies booklet, too. 

    We also have information on our website about tiredness and hot flushes. 

    Can you tell me if there are any specialists in the UK for small cell prostate cancer? It is so rare I have only come across three other sufferers in the UK, which makes finding more than the basic information impossible. Is there anyone specific I can contact? Are there any clinical trials? 

    John: As small cell prostate cancer is so rare, I would have to look into this a little further. I can contact you by email after the chat, or you can give us a call on 0808 808 0000. 

    In the meantime, you may already have seen this, but Cancer Research UK have a page on small cell prostate cancer

    I have been on Prostap for one year and completed 37 radiotherapy session back in November 2012. My side effects are mainly fatigue and tiredness. Is there any medication available to help ease this situation? 

    Jennifer: At this point it is normal to still have some fatigue after your radiotherapy. This will hopefully start to improve over the coming months. Have a read of our information on coping with fatigue

    You may find gentle exercise is helpful and complementary therapies. We have information on these on the website. 

    Another chat guest: I took part in the trial for the Prostate Cancer UK fatigue service - and I can recommend it. A specialist nurse phones you about five times over a few months - and they are very helpful.

    I was diagnosed in March 2011 with a Gleason of 8 3+5. Should I be having a yearly biopsy or just the three-monthly PSA checks? I am on the chemo branch of the Stampede trial.

    John: I will need to check the trial protocol for that one. I can contact you by email after the chat, or you can give us a call on 0808 808 0000. 

    There are problems getting on and staying on support group of Employment and Support Allowance and Disability Living Allowance for those who are on hormone therapy and have chronic fatigue or weak legs due to muscle wasting. Can Macmillan do more to lobby and inform those in government / Department of Works & Pensions on the needs of men with PCa?

    Jennifer: As a Cancer Information Nurse Specialist, I’m not involved with campaigns like this, so I can’t give you much specific information on this. You might find it helpful to look at our campaigns pages, or else contact the campaigns team for more information.

    My dad has advanced prostate cancer with secondary bone cancer. I need to be with him right now, but live 250+ miles away. I’m stressed to the max and cannot get time off from work. If I see my doctor and explain, do you think he would sign me off for a few weeks so that I don’t get sacked from work or before I walk out, so that I can spend some time with my dad? 

    John: I’m sorry to hear you’re having such a stressful time. Yes, you should talk to your GP and also give the helpline a call on 0808 808 0000 and speak to one of our team – we can give you lots of information on your rights at work. 

    We also have some information on our website on working while supporting someone with cancer

    My uncle has prostate cancer that has spread to his bones and his PSA is now in the 1000s, although 1 month ago it was 134. It has also spread to the lymph nodes. Is it usual to go this high, or is it a sign that the cancer is now out of control? He is and has only ever been on hormone treatment and is now too poorly to tolerate suggested chemotherapy. 

    John: A rising PSA such as this is likely to indicate that the prostate cancer is active at the moment. If he is on hormone therapy then it is likely that they may talk about changing his drugs. Sometimes they add in other hormonal therapies. Prostate Cancer UK has a good fact sheet about therapy when hormones are no longer working

    My husband was diagnosed four years ago and was only offered three monthly hormone injections. Four years later, he has been permanently fitted with a catheter, and has had a colostomy, and renal failure also. His cancer has spread to his bones and lymph, and he’s had radiotherapy to his neck. The oncologist tried chemotherapy at a reduced dose, but my husband reacted badly to it after only a few minutes. What do you think his prognosis will be? 

    John: I'm sorry to hear that your husband is having such a hard time. You could ask your GP about seeing a Macmillan Nurse at home. I’m afraid can't discuss a person’s outlook in this way - only his doctor can give you the information you need. You could call the helpline on 0808 808 0000. 

    You might want to read this page about getting a Macmillan nurse

    You might find our information on if someone else has cancer helpful. We also have a group in our Online Community for people who are supporting loved ones with cancer.

    With all the treatments now available, is the prognosis improving do you think? 

    Jennifer: There are certainly more treatments available for men with prostate cancer, and they are living longer as a result of these treatments.

    There seems to be a lack of awareness about some of the problems of men on hormone treatment – many of whom have depression, mood swings and anxiety issues. What can Macmillan do to help promote awareness? 

    Jennifer: Hopefully chats like this will help, but we're also keen to listen to see what others think we should be doing to be more effective. 

    My dad is on prostap injections monthly. Towards the end of the month, just prior to his next injection, he becomes very moody and at times quite aggressive. Is this normal?

    John: We do know that hormone injections can cause mood swings. However, I think that you can't say the whole reason is down to the jab. It might be good for him to talk to a nurse or doctor about his feelings. Support groups and our helpline can also help. 

    Maybe having a look at our emotional effects of cancer information (also available as a free booklet) might help you, and your Dad. 

    My dad’s cancer is in his bones now. He's 80. I'm too scared to ask what this means. 

    Jennifer: This means he has an advanced prostate cancer. But this can be controlled, sometimes for a long time, with hormonal injections. You are welcome to call the helpline and we can talk more about this. The number is 0808 808 0000. 

    We have some information on our website about advanced prostate cancer and what this means, as well as treatment for advanced prostate cancer

    Read more about Prostate Cancer Awareness Month, as well as Ovarian Cancer Awareness Month and Brain Tumour Awareness Month-  which are all happening this month - on our Cancer Information Team’s blog.