Life on hormone therapy

User

Posted 06 Aug 2021 at 09:47

Good morning all

Well things have progressed since I was last on here.

Since my husbands post operative rise in PSA to 0.1 in August 2019, it rose again a year later in August 2020 to 0.2. We thought at that point salvage radiotherapy would bebb by offered but the consultant decided to monitor in the hope the PSA might return to 0.1. Of course it didn’t, in April of this year it reached 0.3 and he was referred to Oncology.

He was started on hormone injections, Zoladex 3.6 one a month and has now had his third injection.

he was due to start radiotherapy to the prostate bed this month however the CT scan showed too much gas in the bowel and the bowel and bladder in the wrong position. He was prescribed a laxative twice a day and re scanned on Wednesday of this week. The oncologist phoned to say the scan still showed gas and the bowel laying in the wrong place and therefore they are not going to proceed with radiotherapy and he will now be on hormone therapy to control the cancer.

bit devastated as we had hoped salvage treatment would be a cure and that is not to be.

so no cure and not sure of how long the hormone treatment will be working. Is anyone else on this treatment and can give us some hope. Sorry I’m being a woos today just really down in the dumps.

thanks

User

Posted 06 Aug 2021 at 13:40

Steenie

There are quite a few of us who have salvage RT that still does not eradicate the cancer. My SRT didn't do me any favours and my next logical option would be HT.

Hope the HT keeps things under control.

Thanks Chris

User

Posted 06 Aug 2021 at 13:42

Steenie,

I don't know where you're being treated, but I think you should ask for referral to a specialist prostate radiotherapy centre. This is something they're more likely to have come across. They could give him a PSMA PET scan too, to try and find where the cancer is, and a more targeted radiotherapy might be possible.

It might be useful to say roughly where you live and where you're being treated.

User

Posted 06 Aug 2021 at 13:48

Thank you Chris, I guess you are right RT doesn’t always work but we were more or less told it would be curative so it gets your hope up. Mind you we were told he was cured after the surgery and that wasn’t accurate either.

many thanks for your response

Steenie

User

Posted 06 Aug 2021 at 13:50

Hi Andy

i didn’t know there was such a thing do thank you for the suggestion.

will live in Dagenham Essex and are being treated at Queens Hospital Romford, so not sure if that service even exists in this area, but it’s certainly a thought.

many thanks

Steenie

User

Posted 06 Aug 2021 at 14:03

Seems wrong to write him off like that. As above maybe second opinion. A PET scan could help but unlikely at such a low PSA. I know everyone’s figures are different but to give you some hope my post op psa was 1.5. I was offered SRT but refused it because they told me it wouldn’t be likely to be curative !! So I got on enjoying life and recovery for 5 yrs whilst my scans kept coming back negative but my psa got up to 990. I’m 6 yrs post op now aged 54 and been on HT six months and am responding well to it. Good luck to you both

User

Posted 06 Aug 2021 at 14:12

Hi Chris

thank you so much for your reply, that certainly does give us hope.

so pleased that you are doing well and seems I’m making such a fuss when you have such a high PSA and I am being such a baby over 0.3.

I just hate to see my better half unwell and feel so useless that I can’t help it take it all away for him

thank you

Steenie

User

Posted 06 Aug 2021 at 14:19

I know it’s hard for you. Don’t get me wrong , some people can become very ill with a very much lower PSA, but my best guess with your figures is that he only has remnants of cancer left round prostate bed which could normally be mopped up by SRT with curative intent. So re-visit why he can’t have this maybe. Seems strange. But with such low figures and on HT I doubt he’s going anywhere any time soon:-)

User

Posted 06 Aug 2021 at 14:34

Hi Steve

he had the first CT radiotherapy planning appointment and they said they couldn’t see the prostate area as there was too much had in the bowel. They prescribed laxatives twice a day, although Chris doesn’t suffer with constipation and has regular vowel movements, but he has taken it religiously anyway.

they did a second CT scan two days ago and said the area was still obscured. The oncologist phoned yesterday and said that his bladder is an odd shape which wraps around the bowel and the bowel has moved into the void left by the removed prostate, as such the radiotherapy would hit both the bladder and the bowel and would cause damage to both and still not hit the right area, so would be too great a risk.

I did ask whether anything could be done to move the bowel out if the area but was told that’s not possible, which I can understand.

so hormone therapy is the only option, but at least it’s treatment and hopefully it will work for many years.

thank you so much for replying I so appreciate it

Steenie

User

Posted 06 Aug 2021 at 14:35

Sorry I meant Chris, I’ve had support from so many people today my brain is scrambled

User

Posted 06 Aug 2021 at 15:29

Originally Posted by: Online Community Member

i didn’t know there was such a thing do thank you for the suggestion. will live in Dagenham Essex and are being treated at Queens Hospital Romford, so not sure if that service even exists in this area, but it’s certainly a thought.

Depending how easily you can get there, the Royal Marsden, or UCLH might be good choices. You can initially ask to be referred there for a second opinion.

User

Posted 06 Aug 2021 at 15:41

Thank you

Chris had his surgery at UCLH and was under their care for the first 18 months and then referred back to King George Ilford / Queens Romford for Urology follow up, so that’s something I could do

thank you

Steenie

User

Posted 06 Aug 2021 at 16:11

Deciding that RT is not safe because if the position of the bladder and bowel makes more sense than deciding not to go ahead because he suffers from gas - a strict diet could have resolved that but the collateral damage to bladder and bowel is perhaps too high risk.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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