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8 weeks after prostate removed

User
Posted 14 Oct 2018 at 23:53

Hi, I'm new here, so this is where I am at

I watched the full Monty programme in April and my wife persuaded me to ask the GP for a PSA physical examination as it was about 3 years sine the last one. The GP didn't feel anything hard so said it looked like all was well but to be on the safe side I should have a PSA test.  It came back as 6.9, the GP said that it was a low reading but that to be cautious I should have biopsies taken, they showed up as a moderate cancer so in July I had an MRI scan. I was told that the scans showed a tumour and that I had prostate cancer, however they didn't show the tumour extending outside the prostate. It was a shock all right, the treatments were explained to me and I elected for robotic prostatectomy as it seemed to be the way to get rid of the problem.

That was just over 8 weeks ago,  the surgeon said that the operation went well. I was out the next day and didn't get any side effects afterwards or the anaesthetic. Wearing a catheter was ok but it was good to get rid of it after two weeks, the self injection was fine although I never really got totally comfortable with it, I haven't really had any great leaking problems so I was feeling positive apart from still feeling a dull ache in the region where the biopsies were taken.

I went back to see the surgeon last Friday, I had a PSA test the week before. He told me before the operation that he expected the PSA reading to go down to 0.01, at the meeting he started off by saying that the PSA was 1.5 meaning that as the prostate isn't their any more that the cancer must have broken out. This was a body blow as I fully hoped and expected to be given the all clear. I now have to have a further PSA test tomorrow then PET and CT scans to identify where the cancer is now. I'm of course very anxious and also not happy about the poor diagnosis and delays particularly as they knew that my brother died of prostate cancer some years ago.

I doubt that the PSA level will have dropped but you can but hope, the thought of hormone treatment and going for RT every day for 6 weeks is something that I dread but I guess that if it kills the cancer then that's the main thing.

My gripe is with the GP surgery as if I hadn't asked for a PSA test then I could be here now with prostate cancer developing and none the wiser. They know about the deadly disease but just don't accept that PSA testing is something that all men over 50 should be alerted and monitored.

User
Posted 15 Oct 2018 at 00:53
That isn’t down to your GP surgery - it is national policy. Even PCUK doesn’t advocate screening programmes for prostate cancer.

I am sorry that your result was not better. RT / HT but it may not be as bad as you imagine - my husband delayed it for 2 years after his RP but when he eventually accepted he needed it, found it to be a breeze. However, your post-op PSA suggests more than just a few cells left behind in the prostate bed so don’t accept RT without those scans being completed to prove that there is a chance of it being successful.

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

User
Posted 15 Oct 2018 at 06:35
My results were identical to yours. Click my picture and read my story. I’m 3 1/2 yrs post op and still refusing RT and living a normal life

If life gives you lemons , then make lemonade

User
Posted 14 Apr 2019 at 15:35

Well it's been a while, in December I started hormone therapy, it's been ok but takes away any libido, it's not that major I guess when you have had a none nerve sparing RP.

In early October at my 3 month check up after the operation my PSA was 1.5 so the consultant said that I need additional treatment i.e. HT then RT. it then rose over the next 7 weeks to 2.9.  I began to eat a healthy diet, having acupuncture and meditating. In early February it dropped to 0.2. It could just have been the HT that caused the drop, a month later it dropped to >0.1 which is apparently as low as the equipment can register.

15th February the Oncologist telephoned, she said that they had considered my scans and think that targeted radiotherapy would be beneficial, the nodes are small and then there is the iliac bone, it won’t kill the cancers but could improve long term prospects. She left me to think about it and I later agreed.

I saw her colleague two weeks later to sign the consent form, I asked her whether the cancer could be killed off and she said not, she spoke only of survival rates so I was dismayed by that but determined to keep positive.

4th April: I had my first RT session.

14th April: I have now had 6 RT sessions, no noticeable side effects so far although after researching radical remissions I'm thinking that if this won't kill the cancer cells then would I be better taking back control.

User
Posted 14 Apr 2019 at 16:35
You say in your profile you have no chance of seeing an oncologist, yet you are clearly under the care of one.

Our Matron here, the fount of all knowledge, pointed out that 60% of men in their 60’s, and 80% have some PCa, so the likelihood of all your cancer cells being killed are slim. And then more might come along, either PCa or some other cancer.

If you have been lucky enough to have had radiotherapy with barely any side-effects, I would go with what your specialists advise. You are seventy years old with probably many years ahead of you. Quality of life comes into it, of course.

Best of luck however it pans out.

Cheers, John.

User
Posted 14 Apr 2019 at 21:01

You are right that I have been seen by an oncologist John but the next meeting is some way off, you can't simply request to see them in the NHS as they are so busy that it takes weeks or months, my next appointment will be some time after the RT.

I haven't completed my RT as I've only had 6 out of 38 sessions, I don't feel particularly lucky to be offered it as of course it's the standard treatment that lots of people have, indeed the hospital in Bristol is overwhelmed by the amount of people that are being treated. 

I just think it's a shame that they don't embrace alternative approaches to dealing with cancer.

User
Posted 14 Apr 2019 at 23:20
That's because there aren't any alternative approaches that can cure prostate cancer. There are plenty of things you can do to help your body to fight cancer, but as you say, with bone mets the radiotherapy isn't going to cure you so it is your choice whether to continue. For some men, the hormone therapy can control it for many years and a healthy diet & exercise can help with that.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Apr 2019 at 01:10

Can someone explain why radiotherapy can cure prostate cancer if it is in the prostate or prostate bed, but targeted radiotherapy to bone mets can’t kill those?

Greetibgs from Cambodia - off to see Angkor Wat today.  PCa is going to bankrupt me since I decided to see more of the world whilst I’m still fit and able.

Ulsterman

User
Posted 15 Apr 2019 at 07:26
I'm currently having RT, 20 sessions on my prostate. I asked why aren't they also targeting my cancer in my iliac bone but they say they only do that for pain relief.

Why?

User
Posted 15 Apr 2019 at 08:33

Originally Posted by: Online Community Member

Can someone explain why radiotherapy can cure prostate cancer if it is in the prostate or prostate bed, but targeted radiotherapy to bone mets can’t kill those?

Greetibgs from Cambodia - off to see Angkor Wat today.  PCa is going to bankrupt me since I decided to see more of the world whilst I’m still fit and able.

Ulsterman

Our oncologist does give RT to isolated mets with curative intent, but only if there are one or two clear hotspots  and only if they are not in the previously irradiated area. 

Enjoy the trip 

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

User
Posted 15 Apr 2019 at 08:36

Originally Posted by: Online Community Member
I'm currently having RT, 20 sessions on my prostate. I asked why aren't they also targeting my cancer in my iliac bone but they say they only do that for pain relief.

Why?

You are in an unusual position. It is only very recently that men with bone mets have been offered RT to the prostate and very few oncology departments do it. But its intention is not curative, simply to slow it down. 

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

User
Posted 15 Apr 2019 at 13:10

Thanks Lyn - I do hope targeted RT is not something I’ll ever have to do 

Ulsterman

User
Posted 15 Apr 2019 at 14:14
Yes I understand that Lyn but by giving my single met a couple of zaps wouldn't that similarly slow down the disease spread?
User
Posted 15 Apr 2019 at 21:29
I think the general thinking is that if there is a seen bone met, there are probably others still unseen so killing one will not stop mets appearing in other bones. Plus in your case, the met is in the pelvic area so you can't have any more than the maximum for that part of your body. If there was a lone hot spot in a distant lymph node, they might take a different view? Worth asking your onco though, if you have previously only asked the RT team.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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