Responding well to hormone therapy and declined radiotherapy - a reasonable decision? - Localised cancer

User

Posted 19 Feb 2018 at 13:41

My husband was diagnosed in December 2017. His bone scan was clear, as was his MRI, although he had already begun his hormone therapy when he had the MRI. He had a PSA test four weeks after his first injection (before we saw the oncologist) and it was 0.89 from an original PSA of 139, so we were very pleased with this. His Gleeson score is 9.

We've seen our oncologist once, so far, and he asked whether my husband wanted radiotherapy. The cancer is still contained within the prostate, but is touching the capsule. The oncologist told us about possible side effects to radiotherapy and, when I asked if the only real advantage of radiotherapy for my husband was that hormone therapy could be discontinued at some point in the future, he agreed that this was the case. As my husband is not having any side effects at all from the hormone therapy and he has responded well to the treatment, he made the decision not to have the radiotherapy and the consultant was happy with this. Of course, now I'm wondering if this was the right thing to do!

I'd really appreciate any thoughts or advice. If he decided to have radiotherapy in the future, would this be a viable option?

User

Posted 19 Feb 2018 at 14:41

Well radiotherapy is your one bite at the cure cherry so deciding to only have HT means accepting that there will never be a remission. Having said that, with the PSA so high at diagnosis the onco may suspect micro mets in which case RT would not be curative and some men will decide in that scenario that the risk of side effects outweighs the small chance of getting it all.

Not many would make the decision you have but I can see why you did so.

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

User

Posted 19 Feb 2018 at 14:54

Hi , you can click my picture and read my profile if you like. Slightly different situation to you but I declined RT three times after my RP. That’s because deep down my results were so bad post op that my Onco feels I have distant mets. The RT was never offered as cure so I rejected it. The damage to my body was enough post surgery to risk even more damage from RT. My Onco thinks my decision was fine even though I’m 50.

User

Posted 19 Feb 2018 at 15:10

Thanks both. You're quite right, as, although my husband's bone scan and MRI were clear, his PSA of 139 meant that, as you said, Lynn, the oncologist felt that there were definitely micro mets. The urologist we saw initially, also said that, with such a high PSA, there was little likelihood of an actual cure and it was a case of management. I think this may be the reason radiotherapy was offered, but not pushed and we both felt that the oncologist was happy with my husband's decision. He's 75.

Thank you so much for your helpful replies. You've managed to clarify things in my mind about the decision.

User

Posted 19 Feb 2018 at 17:39

Genevieve, Had I my time again, in the light of what I know now about new treatments, I'd have done what you and your husband decided to do. I'd have avoided the collateral damage of RT and still have my bladder and prostate. But that was ten years ago! I congratulate you both on your courage and hope it works out well, as I expect it will.

User

Posted 19 Feb 2018 at 18:26

It's a very individual decision. It is quite usual for HT to initially drop PSA dramatically because it works systemically to deprive cancer cells whether they are in the prostate or additionally elsewhere of Testosterone. Unfortunately, one does not know at this point how long HT will work before the cancer finds a way to get round Testosterone deprivation and other treatments have to be tried. It could be within one year or be a number of years. before a man becomes refractory. In any event he may be on HT of one sort ore another for his remaining years even if he had RT. It is possible that having RT to the mothership might slow the rate that the cancer advances but again this is not something that can be determined at this juncture. It has to be accepted that RT may well be less effective if delayed, although it is sometimes given later as a palliative treatment to reduce areas of pain in bones.

Barry

User

Posted 22 Feb 2018 at 19:11

Thank you AC and Barry. One question we didn't ask the oncologist was, would radiotherapy extend my husband's life. This is definitely a question for April, when we see him again. We certainly got the impression, rightly or wrongly, that it wouldn't make much difference to my husband's prognosis, but it was never clearly said.

Thank you all again for your help and advice. Much appreciated.

User

Posted 22 Feb 2018 at 19:29

Hi G
When I had my surgery the post op results were very grim. Pre surgery psa was 48 I think. Post op was 1.5 quickly reaching 2.4. The worst results they’d had in years. They kept offering me RT but quite frankly said “ This treatment is not expected to be curative but rather to ensure that recurrence does not happen in this area ! “ So they all thought I had distant spread already , but wanted to “ throw the kitchen sink at me because of my age ( his own words ) “ .
Every time I saw my Onco he kept shaking his head from side to side and reiterating I didn’t want recurrence near my bladder , but truth is no scan has shown a recurrence down there that could be producing a psa of 20+.
I’m glad I picked not to have unnecessary treatment just because it was their only option in their book , and I’ve enjoyed surgery recovery to the full. I changed my Onco , and yes I’m deemed incurable at the age of 50 , but I’m not a sheep and like to follow my own deep research and quality of life desires. I may be proven wrong but I never ever wanted RT after surgery with little hope of cure.
I wish you both all the best in your fight !

Edited by member 22 Feb 2018 at 19:32 | Reason: Not specified

User

Posted 22 Feb 2018 at 21:01

We are not going to try to encourage men to have or not have treatment of one sort or another. Faced with what we are told is the known and possible situation here, doubtless some men would plump for AS or HT and only go for further treatment when rising PSA or other indicators such as scans or for example pain, lead them to decide the time has arrived. There are a number of reasons for a man seeing it this way, age, other medical problems and the aversion to having say RT are some of them. At the other extreme, there are men like myself diagnosed with stage T3A PCa where the cancer was in the process of breaching the capsule. I was aware that the chance of RT eradicating all of my cancer was small but nevertheless I wanted to take the chance. Following HT in 2007/8, I had RT in 2008 but no HT thereafter (most probably not the norm nowadays), so I have avoided all the continuing side effects of HT. By July 2015 my PSA had only risen to 1.99 and MRI/transperineal biopsy showed cancer in only one of 50 cores which was dealt with by HIFU in July 2015. I do have a suspect lymph node and am seeking a more advanced scan to help decide whether this should be removed or dealt with by further RT. For me the RT was a breeze and side effects minimal compared to HT. (There is of course the small possibility of a another cancer being initiated as some time in the future because of the RT). So I am very glad I did opt for RT when it was offered and could offer maximum advantage. I am convinced it greatly restricted the advance of PCa in my case, along with the HIFU which again I was lucky with in terms of side effects.

Edited by member 23 Feb 2018 at 08:43 | Reason: Not specified

Barry

User

Posted 23 Feb 2018 at 21:27

This situation illustrates once again how individual each case is and how difficult it is to generalise. In my case all the available evidence pointed to the cancer being contained within the capsule (I was T2B and Gleason 7 - 4+3) and the choice to have RT was relatively easy for me. Side effects were tolerable and I don't regret the decision but whether I would have gone for it if there wasn't a good chance of cure - or at least knocking the can a good long way down the road - I'm not so sure. It looks as if the oncologist in your husband's case is relatively comfortable with his decision.

Wishing you and your husband all the very best.

User

Posted 26 Feb 2018 at 19:59

Hi, You could consider your husband's overall health, what he can tolerate and how long he expects. If it's a reasonable time my own thought would be to remove 'the mothership' as Barry aptly called it and believe that any small growths will take longer to develop and something new could come along. Hope is a powerful thing. Best Wishes

User

Posted 27 Feb 2018 at 09:44

It's an interesting, and accurate, statistic that fewer than 50% of men with prostate cancer die of prostate cancer.

Hormone therapy is not curative, but it can keep cancer at bay for some years. Not forever, alas. But then, more than half the men who have RT will eventually get a recurrence of the disease.

It's all about time. Being realistic, at 75, I reckon your husband can afford to leave out one treatment stage and enjoy a good while yet, and I'm sure many would not even have been offered RT at that age.

But having just completed my three years of Post RT hormones, do watch the side effects. I found they got easier over the three years (though this is hindsight, I didn't notice so much at the time!), while some people find they get worse. And the energy-sapping and depressing elements are long term effects. You and your husband need to remain aware of how it's affecting him, so that you can deal with any problems arising.

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Responding well to hormone therapy and declined radiotherapy - a reasonable decision?

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