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Salvage radiotherapy

User
Posted 01 Apr 2017 at 17:15
Hi Kevan,

I will keep you posted on the RT. I am also on PROSTAP and will be for at least two years post RT. I have found for some reason I am getting more hot flushes having changed from the 4 week injection to the 12 week one. Otherwise I find the HT ok.

You are quite right to enjoy the lovely weather today. I have been out for a walk and it is glorious, uplifting for the soul!

Hope the HT goes ok for you.

Best wishes,

Ian

Ido4

User
Posted 03 May 2017 at 15:41
I thought I would post an update on my salvage radiotherapy. I finished the last of my 20 sessions last Wednesday 26th April with 55 Grays bring targeted at the Prostate bed and the seminal vesicle remnant with active cancer. I have coped surprisingly well so far but feel pretty tired and am having bowel issues in terms of urgency. I am using Fybogel to calm this aspect down. I find I need to go to the loo multiple times before I begin to settle down. I am managing to go out but am trying to time it so that I am not cuaght out. My next PROSTAP 3 injection is on 18th May and I will continue on this for two years post radiotherapy I believe.

I am trying to visualise the cancer has gone and hope that in two years time my PSA will stay down after HT stops.

My body has been hammered with laparoscopic radical prostatectomy, HT and now radiotherapy in a period of about 21 months. I am trying to remain positive and to that end have managed to get travel insurance and have booked flights to Canad in July to see our eldest son who is working in Calgary for a few months. Something to really look forward to which is really important for all of us in our situation. You are all amazing people and this site is so useful. I would find life much more difficult without it as well as my family and friends too of course. Best wishes, Ian.

Ido4

User
Posted 03 May 2017 at 18:29
Hi Ian

Lovely feeling when you have finished the RT isn't it. Another step along the road completed so fingers crossed for a good result.

Good on you for booking your trip to Canada and I hope that you will enjoy it and have a relaxing time.

I have only had one Prostap injection so far which has been fine but I am 3 weeks post hernia op so am just very frustrated at not being able to get on with the garden at the moment. The surgeon said that the hernia op was a bit more difficult as a result of the salvage RT as it damages some of the tissue as it passes through which makes some of it thicker. Anyway, three more weeks and I should be back to normal.

Glad things have not been too bad for you. All the best for the future.

Kevan

User
Posted 03 May 2017 at 19:08
Hi Kevan, it is really good as you say when RT finishes, not least the driving into hospital every day and filling your bladder in preparation. I am really hoping that it has been fully successful. I am not surprised your hernia op was made more difficult as the radiation damages a whole range of tissues as it passes to the target area. The rotation of the machine helps to minimise this. I am sorry you are frustrated that you cannot do some of the things you want to and hope you recover well and get back to normal soon. Here's to a good summer!

Best wishes, Ian.

Ido4

User
Posted 05 May 2017 at 17:58

A quick update, I had my PSA measured on Tuesday and it is <0.1 which is good news for now but it is very early days.

I don't have PSA testing to three decimal places that would appear to be the norm elsewhere so who knows how much below 0.1 it is.

My PSA doubling time was between 1 and 2 months so the oncologist has repeatedly suggested that there are microscopic mets in addition to the local recurrence the RT has hit. Time will tell. At least for now the number is very good, long may that continue.

Ido4

User
Posted 05 May 2017 at 18:45

Ido4, ultra-sensitive PSA testing seems to have been brought into disrepute and our hospital has put a halt to all PSA tests at smaller than 1dp. Hard for us to get used to as John has had 7 years of ultra-sensitive but I am comfortable that as long as it stays less than 0.1 we should assume all is okay.

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

User
Posted 05 May 2017 at 20:33
Thanks Lynn, that is useful to know. <0.1 seems like the best place to be. Long may it continue.

Best wishes, Ian,

Ido4

User
Posted 19 Jun 2017 at 09:00
I am now nearly 8 weeks post salvage radiotherapy and wondered if anyone knows when it is sensible to start using supplements etc again? Before the salvage treatment I was drinking pomegranate juice every morning, drinking green tea, taking vitamin D3, talking a calcium/zinc supplement and taking selenium. I was told to stop all these as they also protect the cancer cells the radiation was targeting.

I am going to phone an onco nurse but I know many on this forum have a really good knowledge and understanding of those type of questions.

I also note that I have become a bit incontinent again especially when tired, seeming to become a bit leaky between 6 and 8 p.m.

I was OK a month or so after surgery so this is a bit of a shock. Also I am up to the toilet a few times every night due to bladder irritation. Hopefully these side effects will settle again given time.

Still being on HT Is Adding to the tiredness.

Best wishes to all, Ian.

Ido4

User
Posted 14 Aug 2017 at 14:11

I thought I would update on my progress and get the view of the wider experience on the online forum. I finished salvage radiotherapy 26/4/17. My PSA <0.1 on 2nd May 2017 and again 1st August 2017. Prior to this my PSA doubling tome was around 1.2 months and started rising approx. 1 year from surgery.

My neutrophill count was 0.85 on 2nd May and is now 1.1. I saw a different oncologist from the one I usually see today. He is happy that the PSA is undetectable(as am I) and is unperturbed by the low neutrophil count.

Since my PSA return was early and the PSADT rapid I asked his view on early chemotherapy given that my previous oncologist said that the quick return and rapid rise in PSA almost certainly meant I had metastasis but it wasn't big enough for scans to pick it up, particularly since the resolution of the PET scan is a minimum of 5mm. He told me that since the PET scan I had last December was negative for any spread (my PSA at the time was around 0.8) that he didn't think any further treatment was necessary or desirable. I will remain on HT (PROSTAP 3) until the end of April 2019.

I will be so happy if this salvage radiotherapy has cured me but worry that if I have microscopic metastasis that by the time this is picked up chemo won't be as efficient as it would be earlier. That said I don't want to unnecessarily intervene for the sake of it having read some of the problems fellow sufferers have had during and after chemo.

Shall I just accept this advice and hope that I am cured or should I seek a second opinion? I really don't know what to do for the best.

Your views and advice on the above would be very welcome. 

Ido4

User
Posted 14 Aug 2017 at 14:42

Firstly lets assume the best and say that there are no metastases. Having chemo in that situation would be madness, no gain and lots to lose.

Now lets assume the worst and say that there are metastases. In that case the PCa is incurable (just like mine). Chemo can only slow the PCa up a bit. However, your PSA indicates that any metastases are still very small. Not much there for the chemo to attack. Therefore, little gain and lots to lose.

The decision therefore seems to be simple. Don't do chemo unless and until PSA changes indicate it is necessary.

User
Posted 14 Aug 2017 at 14:52

I think you've been really brave and tackled it head on. You've more or less done all you can for now I think. Oncologists around the country treat things differently but I feel you've had good advice. Click my picture and read my profile. Sort of similar to you I think although my psa post surgery was instantly high and racing. They are so convinced I have mets that I've refused the RT. They said I was off the cure path with my lymph node involvement. I'm not even back on HT thankfully and in very good health. We're going to wait till psa around 20 and then re-try PET scans etc. I'm not in denial but living life to the full off treatment rather than maybe going bananas with stress having it. I've been working as a Healthcare Assistant at an old folks nursing home for the last four months and it has been giving me an immense amount of satisfaction in my retirement. My wife says it's an unbottled talent we didn't know I have.
I hope you can relax a bit now and enjoy your time without worrying about psa. You've done good !!!

User
Posted 14 Aug 2017 at 15:39

Thanks for your very logical and sensible reasoning, my head gets so messed up with trying to decide on the right course of action.

Let's hope there are no nasty little micro sods around and that I can have a period of relative stability. With the progression of the disease so soon after surgery and the pathological findings showing intraductal cancer as well as an adenocarcinoma tumour which had breached the capsule  I can feel very unsettled. I am sure that isn't unique to me. My PSA was probably around 0.8/0.9 before I started HT last December and my oncologist couldn't equate the size of the tumour on my prostate bed and the tumour in a seminal vesicle remnant producing so much PSA hence the worry.

I just ultimately want to make sure I've done everything I can to stop this horrible monster.

i hope you are continuing to improve after the pneumonia, Ian.

 

Ido4

User
Posted 14 Aug 2017 at 16:01

Thanks Chris, your story has many similarities. It is unbelievably disappointing when the surgery fails, I can't describe how dark I felt when I received the news. I was initially told in January I was incurable and that RT was off the table. I asked for a second opinion and three oncologists met to discuss my case. Apparently they do this sort of thing routinely on each Tuesday lunch time. The decision was to proceed with RT and that the chance of success in curing me was around 40%. Like you my PSA was rising rapidly but after a period of being undetectable (It was undetectable on 1/6/16 and then 0.3 1/9/16, 0.4 8/9/16 and 0.7 around 22/10/16). I had the surgery 23/7/15.

I admire your take on things and coming off treatment if and until your PSA reaches a pre agreed point. I think the choline F18 or C-11 scans seem to be unable to see a lot until PSA reaches about 20 so that seems sensible. That said I had a Choline F18 PET/CT scan last December when my PSA would be around 0.8 or so and it picked up tumour activity on an SV remnant but I think it did that because the tumour was very metabolically active. I had a prostate bed tumour picked up on a Gadolinium enhanced MRI scan last October which didn't really register much on the PET/CT scan as it was not very active metabolically.

I am now suffering increased side effects but generally they are very manageable and other than fatigue I feel well.

I return to my job as a head of science at a secondary school tomorrow (I teach Physics) so we will see how juggling a demanding job and fatigue goes!

I am so grateful that this forum exists and has many knowledgeable and supportive fellow sufferers and their partners.

Many thanks for your comments about next steps and keep in touch re how you are doing too.

Best wishes, Ian.

Ido4

User
Posted 14 Aug 2017 at 16:02

Originally Posted by: Online Community Member

the pathological findings showing intraductal cancer as well as an adenocarcinoma tumour which had breached the capsule

Intraductal cancer. I'd hadn't heard of this before so I've just googled it. I'd assumed you were adenocarcinoma only just like me. I am now not confident of the advice I gave above. This is one for the specialists and I think you should follow their advice, not mine.

User
Posted 14 Aug 2017 at 16:18

Thanks Col, yes it throws a spanner in the works as it is quite rare but tends to behave aggressively and not throw much PSA out. I was told my prognosis is worse because of it's involvement but the urologists couldn't quantify how much worse.

I will seek further advice,.

best wishes, Ian.

Ido4

User
Posted 14 Aug 2017 at 16:39

It depends whether the intraductal was invasive or non-invasive. Generally, intraductal PCa recurs very quickly after RP and does not respond well to radiotherapy so the fact that you have achieved & maintained an undetectable score since then may suggest that the rising PSA was being generated by adenocarinoma rather than the ductal.

Is it likely that you will see the original oncologist at your next review? I would want his take on what difference the ductal carcinoma might make, particularly as some ductals do not generate high PSA.

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

User
Posted 14 Aug 2017 at 18:05

Thanks Lyn, I'm not sure if the intraductal spread was invasive or non-invasive, I will see if I can find that out. I wasn't told at the time of the surgical review, they just said that it made my prognosis worse, more unpredictable and raised the chances of recurrence. They also mentioned a tendency for this type of cancer to be more aggressive and suggested that moved me from a Gleason 7 to at least an 8. The appointments I get say you can be seen by any of three oncologists. I'm not sure if I will see my original oncologist in February. He has said in the past that surgery was the right first choice for me as the intraductal cancer doesn't respond well to radiotherapy as you have also pointed out. It also disguises its presence by not throwing out much in the way of PSA. Despite having adenocarcinoma and intraductal cancer my PSA was around 7 or 8. I hope I can take comfort from the fact that the PSA is undetectable after radiotherapy and continued hormone therapy. Do you know if intraductal cancer responds well to other treatments?

Ido4

User
Posted 14 Aug 2017 at 19:14

There have been some good results from docetaxel but I think the jury was out on other forms of chemo. The last research paper I read indicated that even if ductal PCa is identified at biopsy, surgery should be first choice if it is still possible. The blessing in your case was that you had both cancers, I think, as it meant you were diagnosed rather earlier than men with purely ductal would normally be.

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

User
Posted 14 Aug 2017 at 19:17

Are you on 6 monthly appointments???

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

User
Posted 14 Aug 2017 at 19:34
Yes, I agree that I was fortunate that the ductal cancer was alongside "normal" prostate cancer as I believe some poor guys discover things too late and too advanced when it is purely ductal due to the lack of PSA it produces. I would seem to be on six monthly appointments just now. What are your thoughts on that?

Ido4

 
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