We are Macmillan. Cancer Support
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.
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.
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
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
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.
interested in taking part, please email me on email@example.com, with a few details about where you
are on your cancer journey.
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.
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
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
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 www.catmorrison.com.
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.
sense. Is the course quite flat?
I’m not too sure but, given the location, I imagine
that it is flat.
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!
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!
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.
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.
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...
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
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
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.
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.
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.
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.
both disciplines in the same training session as often as possible?
Yes, both disciplines in same training session - at
least once per week.
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.
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.
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.
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.
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.
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...
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.
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
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
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!
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!
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.
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.
swimming element I find the hardest. I'm a weak swimmer - do you have tips of getting
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.
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.
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.
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.
are your top tips for the Olympic triathlon?
and Nicola Spirig - and then the beauty of the Olympics is
that ANYTHING can happen!
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.
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!
is your best song to train to?
Florence and the Machine, Dog Days - I love that.
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!
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
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.
bike course is 7 laps of 11k approx. Could you treat every second lap as time
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
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
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.
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.
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
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.
taking part in a team triathlon with Macmillan. Have you got any tips for a
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
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.
you’ve been inspired to sign up for a challenge event for Macmillan, find more triathlon
and duathlon events on our website.
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 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.
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!
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.
well will help you regain strength
and gentle exercise
can help boost self esteem and sense of wellbeing.
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
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.
encourage you to speak to your doctor about the leg pain to try and find out
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.
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.
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.
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
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.
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
for you. Our information about exercise
after treatment might help.
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.
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?
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.
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
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.
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
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
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.
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.
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.
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
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.
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.
Q: I finished radiotherapy for breast cancer on 29th
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
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.
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
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
that may be more suitable for you.
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
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
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
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
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.
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.
Q: I have just started a course of B.C.G. treatments after having a tumour
removed from my bladder.
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
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.
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.
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.
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.
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
You can also email a nurse via our online
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.
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
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?
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.
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
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
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
cancer and hormonal side effects, which I think could be helpful.
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
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
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.
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
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
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).
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.
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
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
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.
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.
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?
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.
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
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
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
start on Abiraterone shortly. Is there any treatment available when/if that
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
You might want to consider contacting your local Patient Advise and Liaison Service.
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
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.
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.
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.
meantime, you may already have seen this, but Cancer Research UK have a page on
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
You may find gentle
exercise is helpful and complementary
therapies. We have information on these on the website.
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
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
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?
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
We also have some information on our website on working
while supporting someone with cancer.
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.
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.
find our information on if
someone else has cancer helpful. We also have a group in our Online
people who are supporting loved ones with cancer.
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.
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
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
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.
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.
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2014
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