How did you decide which treatment to have?

Hi Greg, I remember all to well the struggle to decide which treatment to chose! I started set on surgery, mainly to simply get rid of it, and to avoid HT. Then I saw the surgeon, he firstly told me he didn't use the keyhole robotic surgery method, as he was old school and wanted to get his hands on it!! Although, unlike you my cancer was confine within the prostate but as it was found in 100% of the biopsy samples, and my PSA was 40 he would be recommending, like you, that I had RT after the surgery! The others 2 factors that led me to decide on RT was when I met the oncologists he convinced me that whatever treatment I had I should start HT straight away to stop the cancer growing. Which I did about a year ago.

I was then leaning towards RT (but still totally confused). I tried to speak to the assigned specialist nurse, but only got the answer phone. Then in a final attempt I got through to another specialist nurse who talked to me for over an hour. At the end she said although it was my decision I should ask myself "Do you want to go through a 4 hour + operation and 20 sessions of RT when both treatments have an equal chance of success?" My decision was to go for RT which I had July 2022. I can't say it is plain sailing particularly the HT which I'm still on, but it's not been as bad as feared and generally hasn't stopped me doing things. I don't regret RT although I have met some men who had surgery and a month after the operation are totally over it. I've met more men who've had surgery and years later are still incontinent. Hope that helps good luck with what ever you decide!

Edited by member 23 Mar 2023 at 17:49  | Reason: Not specified

Sorry you find yourself here Greg.

My husband was originally diagnosed T3a N1 M1b so with spread to lymph node and bone so he was never offered surgery just management. We watched a video on Oligo metastasis with Dr Eugene Kwon and read about Atlanta trial though, so we always wanted to go for surgery and then deal with the rest later.

A second opinion said it wasn’t in the bone and new surgeon agreed to do the op and removed 14 lymph nodes at the same time (1 was infected). He did say that it was really likely RT would be needed afterwards.

Rob had 14 months of undetectable PSA but just the last couple it has started to rise. Obviously we hoped for a miracle and that it would just all be gone without further treatment, but still no regrets and we are grateful for over a year of him feeling much more positive. 

Fortunately he got through the surgery really well and although still has ED other side effects not too bad. 

I think because surgery is much more risky if RT fails that’s why many younger men go for surgery. 

Wishing you the best of luck with your decision. 

Elaine

The idea that if RP fails you can at least have salvage RT is flawed. If your primary treatment fails, the chance of ever achieving remission falls to less than 50% - the best starting point is to try to work our which primary treatment is most likely to eradicate the cancer. Depending on the results of the next scans and clarification of whether nerve-sparing is possible, it seems radiotherapy and/or brachytherapy may be your best option

Hi Greg, you are in the right company here- we have all faced variants of the same dilemma. As you will have discovered already this is a situation in which getting hard data on which to base a decision is quite difficult- more that you would expect given how common PCa is. Nett nett, there is no single right or wrong choice. 

The underlying problem is that there is  both 'noise' and 'bias' in the information available to you: 'noise', in that different observers will legitimately interpret your situation differently ( interpreting scans is not the black and white thing we might like it to be- there's lots of greyscale of ambiguity) and 'bias' because there is a sense in which professionals will lean in the direction of their specialism when recommending a treatment plan.   It's why MDTs are used to evaluate your case- to try to correct for these sources of error. ( And if we are being a bit more thorough, there is also latency, in that data on survival rates is, by definition, looking back to treatment standards which were current several years ago). Noise, bias and latency- don't be surprised that you are finding it difficult to make a decision. But you can and will find a way through.

It's not helpful here to suggest a preferred treatment for you- only you can evaluate the weight of the various probabilities of both treatment and the impact of side effect. But what I think one can say fairly safely is that if you are unsure, buy yourself some time to carry on reading and thinking. HT will slow things down and  buy time which  will take the pressure off and help you get to the point we all have to reach- making a decision that we can live with, whatever the eventual outcome. The most important thing, by far, is that you are at peace with your choice.

Keep reading, keep asking, keep thinking.

Best of luck

Yes, the purpose of an MDT is to bring different perspectives to bear, and to bring debate out into the open, rather than just in one person's head, so assumptions can be made explicit and tested, and parallels ( or differences)  drawn with a wide range of cases. Think of it as a built-in second opinion! 

PSA counts can bounce around a bit and can be influenced e.g. by  a urinary infection, so don't read too much into a single score . I know -  easier said than done! 

Hi Greg J,

Lots of people have already given useful information, so I'll just say that, if you have time before you need to make a decision, you could do worse than read a book called "Saving Your Sex Life - A Guide for Men With Prostate Cancer" by Dr. John Mulhall. 

If you have a Kindle Reader, you can buy it there, because I think the print version is an American import and is very expensive.  Alternatively, he has some free videos on youtube.  The book is written from an American perspective and some of the discussion relates to American private medicine, so may not be relevant to your situation, but he goes through all the various treatments and their likely adverse effects.  He does not come down in favour of any particular treatment - just lays out the facts, as he sees them.  The book is about 10 years old, so practice may have moved on a little, but it's still got lots of useful information in it.

Best of luck.

JedSee.

Hi GregJ. I had a pretty similar diagnosis to you (Gleason (4 + 3), stage T3bN0M0. The MDT had a preference for RP but I was also told  RT/HT would offer a similar outcome. My immediate reaction was that I just want this thing out but after consultations with both the oncologist and the surgeon (another old school surgeon who felt open surgery was the better approach for my diagnosis) the decision became far more difficult. In the end I opted for RP mainly because I didn't relish a lengthy stint on HT. My surgery was 13 months ago and since then I have also gone through 33 session of RT. As for the cure, the jury is still out at the moment. Erectile function and continence are by no means perfect at the moment but that was an accepted risk. Things may still improve.

Whatever decision you make it is always a gamble because you don't really know how adverse the various side effects will be for either treatment path. We are all different. I think in my case I probably backed the wrong horse. I was told before the surgery that because of the risk of spread outside the prostate, local lymph nodes would also be removed. I didn't think that was a big deal at the time but it was this part of the procedure that led to a number of post surgery complications which were never in the plan. Thirty six nodes were removed, one of which turned out to be positive. I know of someone else who had a similar number removed and suffered similar post surgery complications as me. I have lymphoedema in my right leg and now need to wear compression stockings for life. Some surgeons don't touch lymph nodes unless they actually look suspect on a scan. So it is worth asking if your surgeon intends to remove any lymph nodes and if so how radical is the lymphadenectomy going to be.