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User

Posted 22 Oct 2018 at 20:47

The most important question now is to ask the urologist to explain what the benefit is (in their view) of having surgery and radiotherapy / hormones - with the associated side effects of two radical treatments - when you could just have radiotherapy / hormones and one lot of side effects. And then ask the oncologist whether they believe there is a benefit in having surgery as well as radiotherapy.

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

User

Posted 23 Oct 2018 at 15:03

Hi Maria, sorry to jump on this thread but I've just read Lyn' s latest comment and have often wondered why my dad (who's T3b) has never been offered surgery to remove the prostate, just radiotherapy which he's currently undergoing and hormone therapy? Perhaps it depends on the hospital/region? Could you perhaps shed some light Lyn? TIA

User

Posted 23 Oct 2018 at 19:23

That sounds like a logical reason Mr Angry. When dad was first diagnosed he was told by the Urologist his PCa was T3b, N0, M1 (spread to pelvic bone in 1 spot on scan) however upon meeting the Oncologist 2 weeks later he was told the bone metastasis was more likely a benign bone island. Her words...... "we are going to give it the benefit of the doubt." So instead of starting a course of early chemo back in May, his treatment plan was changed and he started 7.5 weeks of radio last week, with it being treated as locally advanced rather than advanced PCa. This stressed me a little because I was thinking if they're wrong and it is in fact advanced, his life span may be reduced even more by the lack of early chemo, however this latest news based on recent trials about how radio, alongside hormone therapy, is proving beneficial to men with advanced PCa has given me some comfort. I guess in these situations Maria / Mr Angry we have little option but to place our faith in the Specialists to offer the best treatment they can with the resources they have. I'd certainly be asking more questions though Maria before your husband decides whether to take the surgery route. It sounds like he has been given more options than some other guys with a similar diagnosis. X

User

Posted 23 Oct 2018 at 23:08

Generlly speaking, men having surgery with a T3 are more likely to need adjuvant or salvage RT/HT and operating on a known T3b is much less likely to be successful than trying to remove a T3a. On the other hand, there is more chance of achieving remission with RT/HT as it can be targeted to include the suspect areas.

It may in part come down to side effects as well - men with T3 are less likely to be able to have full nerve-sparing so ED is almost guaranteed and incontinence is more likely (although not certain) whereas RT may not lead to the same side effects and if they do, perhaps not for some years.

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

User

Posted 24 Oct 2018 at 06:35

Interesting study may help reassure that RP is the best choice for locally advanced cases:
http://prac.co/l/ya6j327c

User

Posted 24 Oct 2018 at 09:34

It was reported again at this year’s uro-oncology conference that surgery will eventually be stopped for PCa and all men will have versions of radiotherapy / cyberknife / nanoknife / etc.

In 2016, I remember the keynote being along the lines of “future generations will look back in horror” that we used to be barbaric enough to remove the prostate surgically. I suppose this is parallel to the change in breast cancer treatment in recent years; even friends diagnosed with aggressive BCa have had lumpectomies with adjuvant RT/HT and with or without chemo ... mastectomies are no longer routine except in the most aggressive, high risk cases.

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

User

Posted 24 Oct 2018 at 19:16

Thank you Lyn, I've now got a whole bunch of questions to ask tomorrow. I hope he decides to go with HT and RT and not surgery but at the end of the day, its him that has to make the decision. All I can do is raise his awareness about the pros and cons.

User

Posted 24 Oct 2018 at 20:43

Don't think I am saying 'don't have surgery' - I just would want to know why they think it is worth the additional risks. My OH had biochemical recurrence after the op and ended up needing RT/HT anyway and yes he regrets the RP but even if we could turn the clock back, I know that nothing, NOTHING would have made him make any other choice at the time.

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

User

Posted 24 Oct 2018 at 23:05

Lyn apart from a relationship with hormones and a propensity to metastasize to bones I don't think there is any comparison with breast cancer. The average "lumpectomy" would take an area of tissue larger than a whole prostate gland. Prostate cancer is renown for being multifocal too (70% v 12%?) So is more likely to require whole gland treatment.

Mr Angry retrospective studies can only report retrospectively? Yes you can take advantage of new treatments but basically the current options for whole gland treatment for T3 are the same as they have always been radiate or remove, the study was looking at the outcomes for guys who made those choices. Contrary to what I expected RP showed clear advantages if your goal is longevity and freedom from HT.

Hopefully one day less barbaric treatment than surgery or ionising radiation will be available currently they are not.

User

Posted 24 Oct 2018 at 23:10

No, that wasn’t my point - until recently they removed the whole breast but now are more likely to focus on radiotherapy, hormones and for high risk cases, chemo. Lumpectomies can take a very small area and while I can’t imagine urologists ever developing a technique for removing just the affected area of a prostate, who knows what will happen in the future.

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

User

Posted 24 Oct 2018 at 23:52

Unfortunately, a lot of surveys give varying views on the success of treatments applied singly or also in combination with another. For instance, based only on success rates, one very large study that has been previously linked to on this forum, put Brachytherapy with and without the addition of External Beam slightly more successful than Prostatectomy. But the whole treatment package and possibilities has to be considered by an individual as what he feels is best for him where there are options.

One leading urologist thought it might be possible to treat PCa in the Prostate in the future by injecting by injecting it..

Barry

User

Posted 25 Oct 2018 at 00:54

The brain tumour research we raise money to help fund has been working on injecting the herpes virus into tumours. It is looking rather exciting.

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

User

Posted 25 Oct 2018 at 15:18

We have now seen the surgeon who came over a bit like a car sales man! I'm sure he seriously believes surgery is S's best option but when faced with questions like 'nerve sparing' and 'salvage treatment' (Thanks Lyn) he was very matter of fact and told us there could be no nerve sparing and that S would definitely lose ED permanently and had a chance of being incontinent long term. He also agreed that there was a high possibility that S would end up Adjuvant, RT/HT but reassured us that the nursing team were expert in helping out with long term problems.

S asked a question I wasn't expecting. He said, "If I choose the third option which is to do nothing, what would my life expectancy be?" and the answer was incomplete but interesting. He was told that because this cancer is adenocarcinoma, the likelihood is, its taken ten years to get this far and could take another 10 years before it became a real problem. That said, the time scale could be much shorter but because they don't have any particular studies in this area, it would be impossible to predict. He did however, say that it may be a good idea to take time to think about what he wants to do. S asked, if he took twelve weeks, would he have to go through all the tests again and the surgeon said no because 12 weeks really wouldn't make a scrap of difference.

Before we'd even left the hospital S had decided he didn't want surgery. I of course stand by his decision, though secretly I'm pleased.

User

Posted 25 Oct 2018 at 17:02

Hi Maria,

I haven’t noticed you have told us S’s age, or did I miss it?

I think it’s fair to say that most surgeons want to surge, and most oncologists want to attack you with either their ray-guns or toxic chemicals. The outcomes (morbidity rates) these days are broadly similar.

I consulted with two surgeons and one oncologist before electing for surgery, and all three said surgery was my best bet. Mistake.

I am supposed to be cured now. One surgeon offered non-sparing and the other nerve sparing on one side. It has made no difference as I have no erectile function, but then I have no cancer (subject to another PSA test tomorrow....).

I think my best advice to you and Mr S is to take your time, step back and request second opinions from both another surgeon who is not interested in flogging you a motor, and an oncologist. There are so many “what ifs” with this disease. I think you are entitled to those two additional consultations on the NHS.

I sometimes wonder ‘what if’ I had done nothing and still had hard-ons and ejaculatory orgasms for however long, but we had no idea how fast my tumour was spreading as there was a long gap between my normal PSA test and the raised one.

Click on my profile to get the gory details of my story!

Anyway, I have never felt so well, and the best of luck to you and S whichever path you choose to take. Do let us know.

Cheers, John.

Edited by member 25 Oct 2018 at 17:07 | Reason: Not specified

User

Posted 25 Oct 2018 at 17:22

Hi Maria, glad you've finally had the chance to discuss your husband's options with the Onco. There's so much to take in. I'm sure others with the same stage PCa will be along to give you their experiences. Whatever he decides (although it appears he's made the decision already) I wish you both all the best. I think keeping a positive mental attitude, which isn't always easy I know, will spur your partner on. He's very lucky to have you as his support, taking in as much advice and info as you can off this site and forum, etc. It's given me (the daughter of a T3b patient) comfort and information so that I can support both my dad and mum to the best of my ability. Keep the faith. X

User

Posted 25 Oct 2018 at 17:35

Hi Maria

When your OH asked about the do nothing option is he referring to having no treatment whatsoever? I've been on prostap since 3/9 and have had 2 chemo sessions, next one due on 12/11.

The reason i went to the Drs back in May was because i was peeing a lot and i was diagnosed with Advanced Prostrate Cancer. i've got to say since i started the treatment the peeing problem has been largely alleviated although i'm drinking loads of fluid at the moment to wash the chemo out of my system. My PSA has dropped from 13.94 on diagnosis to 3.35 last Saturday so that was a big positive.

John

User

Posted 25 Oct 2018 at 17:50

Hi John, S is 53. I like the idea of second opinions.

User

Posted 25 Oct 2018 at 18:00

Thanks lisabun.

I had a whole page full of questions and having already read a lot of articles and profiles on this site, especially of men with a similar diagnosis, I sort of knew what those answers were going to be but Steve needed to hear those answers from the horses mouth.

This site has helped us both enormously (For S that's indirectly). Knowing we are not alone and that the people here, people who have been through this hell or are still going through it, but who are still willing to make the time and effort to advise and support new sufferes has been heartwarming.

User

Posted 25 Oct 2018 at 18:06

Hi John, yes, he was referring to no treatment at all. I don't believe he will go with that option but regardless, it was a very valid question and clearly not one they seem to know a lot about.

I'm sorry to hear your diagnosis came so late but it sounds like you are doing well on the prostrap and chemo.

Maria

User

Posted 25 Oct 2018 at 18:48

Originally Posted by: Online Community Member

Hi John, S is 53. I like the idea of second opinions.

Hi Maria,

I see you mentioned 53 in the first sentence of your original post. Sorry I didn’t spot it at first.

If I were only 53, I would not want to ‘do nothing’ for up to thirty years, when there is an excellent chance of remission now, albeit with the potential for side effects. So as I said, take your time before deciding on any treatment and as our Matron here was advised, ‘have plenty of sex’!

And do take advice from your professionals as well as the armchair amateur urologists here, although some are so knowledgable they could qualify as semi-professionals at least!

Cheers, John

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