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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.
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, or would like to talk to someone about cancer, we have a team of experts who can help.
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