Hi Everyone,
I received my diagnosis a week ago. I'm 60 years old and feel perfectly fit and healthy. I've had a rough few weeks, however: my biopsy caused sepsis resulting in two days in hospital on a drip and 10 days of antibiotics. I'm pretty much recovered now. So in the midst of feeling very poorly from the infection I received my diagnosis which was oddly a relief after several weeks of uncertainty. In a strange way I feel lucky as I only got this diagnosis after having a self-referred medical which picked up my raised PSA, otherwise I'd still be in the dark.
I've been advised by the oncology nurse who gave me my results (I live in east Kent) to be on 'active surveillance' ie having regular testing and monitoring. I'm keen to be more proactive as it feels like I'm being advised to wait for things to get worse before taking action. I'd love to hear your thoughts on this.
Thanks, PM
Good Afternoon Piano man
Thank you very much for the update. I wish you well which ever treatment route you elect for.
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I don't agree with the decision some men make to go on Active Surveillance, particularly when it comes to pattern 4 prostate cancer. But your case is an exception.
Only one out of seventeen cores is positive. And only 5 percent of the cancer in that core is pattern 4. Your are likely a good candidate for active surveillance.
I hope you can get one more bit of information from your biopsy report. What percent of that positive core was involved in cancer?
Odd that you had sepsis which is pretty rare. Did you have any kind of inflammation or pain in your prostate prior to sepsis. Often you would be given a month of antibiotic prior to the biopsy if they suspect any type of infection (which could just be inflammation). Proactive is good, my experience with active surveillance is that you are just waiting with a ticking bomb. You are not old and since about 1/2 of people on Active Surveillance wind up with a need for treatment, being proactive is a wise choice. Inflammation of the prostate or infection does raise your PSA levels but with a Gleason 7, I would say go for it. I did radiation on Gleason 6 but my PSA jumped from under five to over 10 in six months. Now, yes, that could be due to inflammation and PSA is not all that definitive, but they did another MRI and biopsy after having that done just 6 months earlier. Who wants to go through this every six months...the wait and the worry. They should also do a decipher test on your results to see how aggressive the cancer is. Using the latest therapy, you go in for MRI guided radiation treatments 5 times in a week and a half. That is it. It is very precise and they separate your bowel and colon using an injected foam (spacer) that wears off after treatment. I have done it, others I know have also with no side effect except just being tired. Note that this is just my opinion, trying to be informative based on my experience. In no way am I trying to contradict any of your doctor's advice.
Hi TomP. thank you for your comments. I have Gleason 3+4 stage 2 and I am struggling to make a decision, the recommendation is surgery or radiotherapy I have asked about AS but this is not what they recommend. I need to start making a decision and meet the clinical team… My thoughts are deal with it now as they don’t know how long before it moves on the the next ….I am thinking radiotherapy but The side effects concern me, because I don’t know at what stage you need hormone treatment and whether I would have bowel issues.. I think your diagnosis was similar to mine do you have any thoughts on this please
Hi Bluecloud1
I was 3+4 at 2c back in April & had the robitic surgery on July 5th.
From my own experience, I flip flopped between routes to take before a piece of information made my mind up for me.
I was told that if I went down the 18 months of hormone therapy with radio therapy and at the end of that period, it hadn’t worked, then I could not choose to then try the operation route as the radiotherapy would have made too much damage to the prostate and possible surrounding area for it to be possible, so then I’d have to go back on to hormone therapy or chemotherapy.
My question to myself then became, why would I deny myself a possible route to a cure? If the operation didn’t work, I could still go on to hormone therapy but not the other way round.
So I made my choice in May for the op which I had on July 5th & in September I was given the all clear, if I’d gone down the hormone therapy route of 18 months, I’d still be looking at another 14 months of treatment now and I would still be wondering if it was working or not.
Of course everything is very personal to you and everyone is different but an informed choice is the one to take as it gives you no regrets.
If you need to get an idea about how things go after an op, let me know and I’ll give you a link to my post surgery diary which I have somewhere on here.
Best wishes & good luck
John
Thank you very much, I now feel more informed and closer to making a decision. I would appreciate the link please and thank you again, this is a very worrying time as you will know so reaching out to you will help me.
Thank you.. I don’t think on the nhs I would get a choice of surgeon so I would have to hope he/she is very experienced. I don’t know whether to think about going private, you would hope they are all good. Your outcome seems a good one, and thank you again.
I hope JohnyBoy doesn't mind me jumping in here but this is the link to his journey.
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