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.