Your thoughts are welcome

User

Posted 11 Dec 2022 at 00:33

Nice one Jules. At 61, I'll settle for modesty if I can get to kick the can down the road for another decade.

Gabriel

User

Posted 11 Dec 2022 at 00:52

JGH that is sound advice and I agree. I think I am fairly positive, but as all of us who are human and indeed men, I have some concerns about how I will be following treatment.

First, and foremost I would like to be here. Second, I am a man. I identify as a man and as such I would like to remain as much a man as possible.

I try to not feel sorry for myself and to balance my thinking with the thought that there is always someone worse off than me. In hoping for the best I aspire to survival and preserving as much of myself as I can.

However, life is full of twists and turns and being diagnosed with PC does not prevent death from another cause. My diagnosis was very unwelcome but it has really focused my attention on the present, on the precious quality of each day and the transience of life.

Since joining this forum I have also become very aware of the many possible side effects and errors associated with RT.

Here is hoping, indeed praying.

Gabriel

Edited by member 11 Dec 2022 at 01:13 | Reason: Not specified

User

Posted 11 Dec 2022 at 08:58

Bear in mind that it's human nature to publicise the rare problems that occur, while the majority for whom it's plain sailing tend not to talk about it. As I've told you before, I found my treatment to be pretty straightforward. The biopsies (I ended up having two) were probably the worst part of it all; the actual RT process was very straightforward and relatively problem-free other than the usual few weeks tied to the loo at the end, but that quickly passed.

All the best,

Chris

User

Posted 11 Dec 2022 at 21:01

Gabriel, you made me laugh with "Half man half biscuit".

To be honest, I don't that much feel I have been through the wars with RT, certainly compared with the original surgery. Though obviously I would prefer not having needed it!

To put it in context, the salvage RT was to deal with a recurrence in PSA readings that was tiny compared with before surgery. Surgery had knocked it down to be undetectable. It wouldn't be reasonable to say it "didn't work". Unfortunately there was a small positive margin, which was always a risk when the surgeon goes for nerve sparing (which I am glad he did, even if I am not currently benefitting). After the operation I put my information into the online risk predictor (published by Memorial Sloan Kettering Hospital in the US) and that suggested I had a one in six chance of PSA rising within 5 years - unfortunately the wrong number on the dice came up. But it also predicted my chance of dying from prostate cancer at any point in the next 15 years from the operation was only 1%, which doesn't sound too bad.

User

Posted 11 Dec 2022 at 21:48

Good man JB. Fight! I am a bit down as i have gone straight onto Zoladex but without Bicalutamide, which seems to be what others have received.

Gabriel

User

Posted 06 Jan 2023 at 02:25

The more I know, the less I know.

I have now seen two radiologists. One has advocated risk management of including the Nodes in RT but the other has said that he does not think this is necessary. He believes that survival rates are similar but radiation of the Nodes carries additional risk. Yes there may be micromets lurking there but I am N0. As he said there may be micromets lurking in my blood.

My original predicted RT was 20 sessions, I forgot to ask if including Nodes would alter this!

I wondered if anyone has faced this choice?

Gabriel

User

Posted 06 Jan 2023 at 08:14

Originally Posted by: Online Community Member

The more I know, the less I know.

My original predicted RT was 20 sessions, I forgot to ask if including Nodes would alter this!

I wondered if anyone has faced this choice?

Gabriel

I had 3 nodes treated specifically with RT at the same time as my prostate was being irradiated. I don't understand what form of treatment would be covered by "including nodes" unspecified, in your treatment. There are a number of lymph nodes in the vicinity of the prostate but I do not think they are not grouped in such a way as to be suitable for cover-all radiation. Similarly, if no cancer has been detected in your nodes, there's no specific nodes to be targeted either.

Unfortunately there might always be cancer cells lurking somewhere but there's nothing we can do about the unknown, plus some aspirational cancer cells never fulfill their ambitions anyway.

Jules

Edited by member 06 Jan 2023 at 08:24 | Reason: Not specified

User

Posted 06 Jan 2023 at 09:08

Thanks Jules. It's also a comfort to know that some aspirational cancer cells never fulfill their ambitions anyway. In this respect they would be following the life of their master

Gabriel

User

Posted 06 Jan 2023 at 10:17

I was PSA 58, T3aN0M0, G3+4. Regarded as high risk, hence possibility of lymph node micro-mets.
I remember all too well your thought that life will never be the same again.

I opted to have my pelvic lymph nodes treated too, even though no disease had shown up in them, hence they were done at just over half the dose (46Gy) they would have been done if there was known disease in them. I remember asking about risk of lymphodema and my oncologist said it's rare anyway with RT, and he'd never had a case of it with the lower dose, so I went ahead with that.

I'm now nearly 3½ years after treatment and 2 years after HT (for 22 months). At my last consultation 6 months ago, I said to my oncologist I now almost wouldn't know anything had been done, which was not at all what I was imagining at your stage. Everything still works just as it did before. There are of course no guarantees and I know not everyone is so lucky. I'm also aware I was a high risk patient and recurrence is a possibility, but I could worry about that the rest of my life and it may never happen, so I think you have to put that out of your mind. I do have one long term side effect and that is some minor painless rectal bleeding, but it doesn't cause any incontinence or any impact on QoL, so I don't care about that.

Lots of detail in my profile and do ask anything.

User

Posted 06 Jan 2023 at 10:41

Andy62

I appreciate you sharing. May I ask why were you high risk, was that because your PSA was 58? What were you self medicating with? 5mgMCP.

It's a very hard decision for me. It appears localised but it is Gleason 8 and all along the capsule anterior for 1.8cm but no invasion of the capsule.

I think you were very brave deciding to do lymph nodes that had no visible signs. Incidentally my PSA was 10.

It's a bloody tough call for me. I wish they had some way of detecting micromets in the lymph nodes.

As an aside , I got really p****d off by my brother just now, who told me that with prostate cancer I have a 98% chance of surviving 10 years!

Gabriel

Edited by member 08 Jan 2023 at 02:42 | Reason: Not specified

User

Posted 06 Jan 2023 at 22:32

Originally Posted by: Online Community Member

As an aside , I got really p****d off by my brother just now, who told me that with prostate cancer I have a 98% chance of surviving 10 years!

On the bright side, that's fractionally better than telling you that you'll die with and not from PC.

Interesting info from Andy on treatment of lymph nodes where no disease had shown up. As well as having 3 nodes treated at 60gy in 45 fractions I had various "elective" nodes treated at the same rate. I can report that like Andy I had no problems with lymphodema.

Jules

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