Advice and Counsel - How Much to Too Much?

Hi Seeking Clear Horizons .

Firstly a warm welcome to this friendly, and sometimes wacky group. No questions are 'dumb' - it's how we all learn, so ask away. My husband did not have a choice of treatment as his cancer had already spread by the time it was diagnosed but you are facing the dilemma many find themselves in, by chance. Until there is a national screening programme for men, in the same way that women have cervical and breast screening, then I am afraid many men will fall through the net and discover that they have cancer, and sometimes incurable.

Very few ask for a second opinion even though it is their right. Getting a second opinion is easy and quick, particularly if you pay for it as a one off option from somewhere like the Royal Marsden. What you will find is that surgeons will advocate surgery, and medical oncologists will advocate HT and radiotherapy, but the final decision is left to the patient so it is important to do your research, which you are obviously doing. The first thing to do is to prioritise what is important to you because both options you are facing have potential side effects both short and long term. Age and fitness can influence how well you recover from treatment. Where you live can determine which radiotherapy options you may be offered so ask the questions about EBRT hypofractionated vs ultra hypofractionated, SBRT, Brachytherapy low Vs boost. Similarly with surgery the questions are about type, nerve sparing, margins, how close to the capsule wall is the cancer. Hormone therapy also has its variants since a range of drugs have been developed in recent years but which one you are offered could be dependant on where you live, and, to be honest, cost. A good starting point for information is the PCUK site and I have given you a link which will lead you on to others.

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/what-do-my-test-results-mean

There are various members who have detailed their journeys through various treatments which you might find useful by just clicking on their avatar e.g. Alpine Wanderer for Brachytherapy boost. 

SBRT is covered by the thread on Pace Nodes Trial.

 RE: Pace Nodes Trial 

I'm sorry if my answer seems vague but unfortunately research is the key to coming up with the best option for you and one that you need to be comfortable with.

You have a meeting coming up so go armed with a list of questions. Also it is a good idea to take someone with you as 2 sets of ears are better than one, and maybe ask to record the meeting as we have so much throw at us that it is difficult to remember everything.

Please ask as many questions as you want and all the best for the 30th

Hi SCH,

Please read my bio (and associated links) as you sound very similar to me with regards to wanting every scrap of information before making a decision.  Alpine Wanderer .  My journey - SO FAR - has been completely tolerable. My cancer, too, was found completely by chance.  I went to see my doctor about a slight allergy, but he wasn’t available, so a newly qualified doctor (who was working in the surgery to gain experience) saw me. After prescribing a nasal spray she said “you haven’t had a blood test for 8 years - do you want one?”   I said yes.  She then added “ Do you want a PSA test added” but warned me about the possibility of over treatments and the NHS don’t impose the test.  I said yes (and I hadn’t heard about PSA before then!).  The rest is history.  AW

Hello Seeking Clear Horizons  Another warm welcome to the online Community.

I see you have already had a couple of replies and I will stick my oar in here (from someone who had no choice in his treatment path).

Your Gleason score gives you plenty of options. Treatment path is a personal choice - they all come with pros and cons. I would make a list of your possible choices, the pros and cons for you as you see them and you should be able to make an informed choice.

Do your research from trusted sources, Macmillan's. Prostate Cancer UK and by reading Community member's personal journey's (many of us have them - you can read a member's profile if completed by clicking on their avatar). Everyone here will answer any questions you may have. Just don't use Dr Google!

I hope this helps, please come back to me if you have any questions.

Best wishes - Brian.

Many Thanks for your response. It is much appreciated!

Hi Seeking Clear Horizons,

A warm welcome to the forum, although I'm sure it's the case that you would rather not be here,  As the others have said, it's important that you do lots of research into the various treatments that may be suitable / available to you & a great place to start is the Prostate Cancer UK link that Always Hope has provided in her reply. Make a list of the pro's & con's of each treatment to identify what's important to you, & take a list of any questions you have so that you can make sure they are covered when you have your appointment next week.  There will be lots of information to absorb at the meeting so it's a good idea to have someone with you as an extra pair of ears will be useful. 

There is no one size fits all treatment as everyone has their own priorities or reasons for choosing whichever route they take, so there is no right or wrong choice.  I'm not sure what you age is (I'm now 68 & keep quite fit), but like you, my Gleason score was 4 + 3 = 7 & whilst I was given the choice of (a) total removal of the prostate and (b) radiotherapy/hormone treatment, I knew that I didn't want an operation (the wimp in me) which left option b.  To be honest, I didn't consider getting a 2nd opinion as I was impressed with the Consultant & specialist nurse at my meeting with them which was very informative & not rushed & they took time to answer all my queries (plus research into the hospital).

If I could go back in time would I do anything differently?  I think the answer to this can partly depend upon the type of person you are & how you view life.  I'm told I'm very laid back & just get on & deal with issues without over worrying & take the view that there's no point wondering about what might have been if I had chosen a different route.  As it happens, I know I chose the right route for me.  

If it helps at all you can read my journey by clicking on my avatar, & if you have any questions then please ask away.

Best Wishes

Brian

Thank you for getting in touch. You have provided valuable information that is important in my decision-making. It is much appreciated.

Thank you Millibob for your advice and counsel. It really is very much appreciated. 

Thank you for getting in touch Brian. Your comments and experience are much appreciated. Believe me, your sharing is valuable. 

Hi Seeking Clear Horizons , I think the others have given you some good advice, but don’t hesitate to keep asking. Most of us started with almost no knowledge about PC and information from this site is way better than Google!  I would add that in my case the MDT discussed my case but I never met them. After this I was assigned an oncologist who has coordinated my treatment ever since. Others may have had a different experience of course. Good luck. David

Hi Buzzers ,

I took another look at your bio: always an interesting read. It’s six months since the end of your radiotherapy.  Have you had a PSA check?  I’m particularly interested, as you came off hormone therapy earlier this year.   AW