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Salvage radiotherapy

User
Posted 01 Mar 2017 at 19:25
I have prostate cancer progression after a radical prostatectomy in July 2015. Currently on hormone therapy (prostap)

My oncolgist was initially very reluctant to recommend radiotherapy for the two local recurrences I have (one on the prostate bed and one is in a remnant seminal vesicle). The reasons were test treating the seminal vesicle area would result in a lot of bowel being hit. I had another appointment on Monday the result of which is I am going to have a radiotherapy planning scan on Friday 3rd March with a full bladder to see if this pushes some of the bowel away from where radiation will strike. I will meet again on 27/3 to get the results of the scan and a risk assessment on the possible toxicity of radiotherapy,

Has anyone else on this forum had salvage radiotherapy after radical prostatectomy?

How were the side effects? What as the outcome?

Thanks in anticipation.

Ian.

User
Posted 23 Apr 2018 at 12:56

That’s mostly good news isn’t it !! You know my views and I know they are different from most people’s. The less time on HT the better I reckon. I think I’m right in saying that the HT isn’t a curative element whereas the RT was ?? Depends whether QOL is important to you. I’m three years post op nearly and only accepted 11 months Bical HT. My psa is now over 24 and I’m having a really good life with scans showing nothing. Running the gauntlet maybe but I want to enjoy life to the full. I’m scared of dying but I’m more scared of not living

If life gives you lemons , then make lemonade

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

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

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User
Posted 01 Mar 2017 at 20:14
Hi Ian

I had my op the month after you and had salvage RT ending in June 2016 but have not had HT.

I had no real problems with the RT itself apart from the feeling that my bladder often felt as though it needed emptying when it didn't. To be fair I had urinary incontinence following the op which when it cleared up left my bladder more sensitive. In the past 3 weeks I have had some bowel discomfort which may or may not be as a result of RT but I am seeing the onco in 2 weeks for a 6 month update. My PSA before the RT was 0.5 and the PSA test in Sept was 0.6. I am having a PSA test next week and will get the result when I see the onco but as they say it can take 18-24 months to reach a PSA nadir it is possibly too early to come to any conclusion. To sum up - I had no real problems with RT and am still waiting to find out if it was successful.

I am happy that it was done and have too say that I can't bring myself to worry about the result as between us we will live with whatever happens and carry on enjoying what life has to offer. Hope all goes well for you.

Kind regards

Kevan

User
Posted 02 Mar 2017 at 13:59

Hi Ian
I had Salvage RT 1n 2011
No problems whatsoever. No side effects.
In fact I quite enjoyed the attention I got from the radiographers and I was almost
sorry when I had my last session. They are very discreet and there was no embarrassment
at all.
Had haematura last year ( maye slight long term damage from RT or just broken veins in bladder)
Had cystoscopy . All clear.
Once again no problem, it has not recurred
I am not on any drugs.
All The Best
Ray

User
Posted 03 Mar 2017 at 08:57

Hi I had follow up RT in 2013 and sailed through it. My routine was hospital first thing. Drink the water to fill the bladder. Two minutes RT then off to work for the day. Don't recall any side effects as such

Going for my latest PSA in two weeks. Last one in October was 0.02

Bri

User
Posted 08 Mar 2017 at 20:18

Thanks for the reply Kevan, I just found it tonight for some strange reason! I had a planning scan last Friday 3/3/17 and am meeting my oncologist again soon to discuss results before deciding whether to proceed with RT. If I decide to go ahead RT will start 28/3/17.

My PSA has dropped from 0.7 at the end of November to 0.1 as a result of HT which will continue for now too.

One thing I would like to know is the area that you had RT over, did it include the seminal vesicle sites?

Hope all is well with you, kind regards, Ian.

User
Posted 08 Mar 2017 at 20:23

Thanks for the reply Ray, I had a planning scan 3/3/17 and will meet with oncologist again to discuss results and whether to proceed with RT starting 28/3/17. I am a scientist so like to make well informed decisions but am overwhelmed by the different information out there.

I am trying to balance my desire to try for a cure against the possible toxic side effects like the haematura you describe and bowel issues.

It isn't an easy decision and today I find myself being a bit low about all of this but I will pick myself up and make a decision soon. Hope things continue to be good for you, Ian.

User
Posted 08 Mar 2017 at 20:27

Thanks for the reply Brian, your PSA in October was amazingly low. We don't seem to have the sensitive PSA test in the Edinburgh area yet, still to one decimal place so 0.1 is the lowest detectable. Can I ask when you had RT did the radiation target seminal vesicle areas or just the prostate bed? One of the two tumours I have is in a seminal vesicle remnant and it is this area the oncologist is worried about due to potential bowel toxicity. I sincerely hope your next PSA is still as low. Best wishes, Ian.

User
Posted 08 Mar 2017 at 20:56
Hi Ian

As far as I know it was just the prostate bed that was targeted.

I am seeing the oncologist on Monday 13th March to get my latest PSA result so am a little apprehensive. I will try to remember to post the outcome.

Kind regards

Kevan

User
Posted 08 Mar 2017 at 21:31
Thanks Kevan,

I think the seminal vesicle area is the problem for me in terms of higher possibility of serious side effects. Difficult decision .....

I will be thinking of you on Monday, hope it is good news for you.

Kind regards, Ian

User
Posted 08 Mar 2017 at 22:30

Originally Posted by: Online Community Member

Thanks for the reply Brian, your PSA in October was amazingly low. We don't seem to have the sensitive PSA test in the Edinburgh area yet, still to one decimal place so 0.1 is the lowest detectable. Can I ask when you had RT did the radiation target seminal vesicle areas or just the prostate bed? One of the two tumours I have is in a seminal vesicle remnant and it is this area the oncologist is worried about due to potential bowel toxicity. I sincerely hope your next PSA is still as low. Best wishes, Ian.

 

Apparently scientists have concluded that the ultra-sensitive test is unreliable. Our hospital has completely stopped doing them now. However, if your hospital offers results to one dp, they should be reporting whether your PSA was actually 0.1 or whether it was <0.1 - you will know better than most how significant that sign is. 

 

The sv area is within the prostate bed. 

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

User
Posted 09 Mar 2017 at 07:37

Thanks, I understand that my PSA was <0.1 for the first 9 months after surgery but 13 months later it was 0.3 and then by November it was 0.7. You are correct in pointing out the significance of my latest reading which was 0.1 so I guess it could be anywhere between 0.1 and 0.14 so definitely not zero but I am hoping the HT brings it down to <0.1.

My understanding is that SV is any radiotherapy delivered after primary treatment e.g. radical prostatectomy. It is generally delivered to the prostate bed but can be adjusted to hit seminal vesicles and lymph nodes but this is less common I think.

I would really like to hear from anyone who had SV to the prostate bed and the seminal vesicle ares at the same time and how it worked out for them. There are so many confusing and different opinions on whether this is a good option or not.

I would dearly love to be cured but realistically not at any cost in terms of quality of life.

 

Best wishes, Ian

User
Posted 28 Mar 2017 at 16:59
An update on salvage radiotherapy. My oncologist was happy with the planning scan and I have gone ahead today with my first treatment after he went through the details of the plan. 19 to follow. He is targeting the prostate bed and the seminal vesicle remnant where one of my tumours is. I am nervous about this but also hopeful that my recurrent prostate cancer can be dealt with despite my oncologist being highly suspicious of microscopic metastasis. I will remain on HT for two years after the RT with PSA readings taken every three months. Best wishes to all. Ian.
User
Posted 28 Mar 2017 at 17:43

i have seminal vesiccle invasion,when i was having rt i asked the radiographer if my sv were targeted and she said yes,that was in 2014,so far so good.

User
Posted 28 Mar 2017 at 18:41

Thanks for the reply radar, sounds like this worked out for you so far. How did you fare with side effects?

User
Posted 29 Mar 2017 at 09:02

ido4,ok so far no problems except my willy is a bit fragile,and some constipation now and again which laxido sorts out.good luck.

User
Posted 30 Mar 2017 at 21:32
Hi All, I am three treatments in out of 20, each dose is 2.75 Grays(55 in total). I am finding today I am passing water from my rectum and feel very windy. Any advice would be greatly appreciated. I will mention it when I am at the hospital tomorrow for treatment 4. I hope this isn't a bad sign, Best wishes, Ian

Ido4

User
Posted 30 Mar 2017 at 22:26
This happened to me a couple of times and I found that a couple of digestive biscuits and some dry toast seemed to sort it. Had the problem in the evening but it had disappered by the morning. As you say, mention it to your team and they will advise you if medication is required but I think most people will have experienced this once or twice.

All the best.

Kevan

User
Posted 31 Mar 2017 at 08:54

i,found low fibre helped me with gas.

User
Posted 01 Apr 2017 at 11:01
Thanks for the information Kevan, hope all is well with you.
User
Posted 01 Apr 2017 at 13:07
Hi Ian

Had my first Prostap injection yesterday so having had the op and the RT thought we would give HT a go.

Feeling really good today and have been out for a run on the bike over the Marlborough Downs in this lovely weather.

Hernia op on the 13th and then I am sorted hopefully.

Really hope that the RT will go ok for you. Keep us posted 😎

Kevan

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

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.

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.

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.

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,

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.

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. 

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 !!!

If life gives you lemons , then make lemonade

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.

 

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.

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.

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?

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?
User
Posted 14 Aug 2017 at 23:00

Everyone is different, aren't they? John has been on 3 monthly testing for nearly 8 years and I think we would both be nervous leaving it 6 months - however, he hasn't always seen the urologist or oncologist every time. Others here have found that 3 monthly appointments & testing means there is no real respite from PSA anxiety and so 6 monthly works better for them. Others have the test 3 monthly and an appointment (real or by telephone) every 6 or 12 months and I can think of members who never saw their surgeon again after the op, getting any aftercare solely from the GP.

You should do whatever gives you peace of mind.

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

User
Posted 15 Aug 2017 at 05:21
I know what you mean. I never saw my surgeon again after surgery. I should have pointed out that I am testing my PSA every three months and seeing an oncologist again in six months. Like you and John I couldn't cope with having PSA tests at six month intervals at this point. Especially since my reading was undetectable in June 2016 and then 0.3 three months later. It would have gone from undetectable to around 0.9 or even 1.0 over six months and introduced further delays and doubt over any salvage treatment. Best wishes, Ian.
User
Posted 23 Apr 2018 at 12:09
I thought I would post an update on how things are going. My profile should be up to date.

I had a bone scan and pelvic MRI in February and March respectively.

Bone scan is clear and MRI shows no signs of further recurrence.

A polyp or slight thickening of the rectal wall was picked up so I have the joy of a sigmoidoscopy to look forward to.

My PSA remains <0.1 i.e. undetectable.

I saw my consultant oncologist today. He is happy with the way things are going. I have a bit of weeping from my back passage at times so was told to cut the fibre down a bit.

He has changed his tune slightly on HT. Initially he wanted me to stay on HT until the end of April 2019 which would be two years after radiotherapy finished.

He now wants me to come off HT next January which will give me two years total on it.

He is keen to find out if radiotherapy has worked or I do indeed have micro metastasis.

He said if the radiotherapy has worked it will make his day, I told him it would make my life!

I see him again in six months and would appreciate any thoughts about how long I should stay on HT.

Ian

User
Posted 23 Apr 2018 at 12:56

That’s mostly good news isn’t it !! You know my views and I know they are different from most people’s. The less time on HT the better I reckon. I think I’m right in saying that the HT isn’t a curative element whereas the RT was ?? Depends whether QOL is important to you. I’m three years post op nearly and only accepted 11 months Bical HT. My psa is now over 24 and I’m having a really good life with scans showing nothing. Running the gauntlet maybe but I want to enjoy life to the full. I’m scared of dying but I’m more scared of not living

If life gives you lemons , then make lemonade

User
Posted 23 Apr 2018 at 20:20
Thanks Chris. Yes, I know your views and I admire your steadfastness in what you’re doing.

The RT was a final curative attempt with a 40% chance quoted of success.

As you have said the HT isn’t curative. Whilst I am looking for an improvement in QOL I also want to give the HT a chance to help things along as a combination of HT/RT seems to give better control.

Time will tell.

Hope things are ok with you, are you getting any scans soon?

All the best, Ian,

User
Posted 23 Apr 2018 at 20:24
“Posted 14 August 2017 16:39:56 by LynEyre

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.”

I asked today if my intraductal cancer was invasive or non invasive. The oncologist seemed puzzled by this question saying “all cancers are by their nature invasive” and Ducati cancers behave significantly more aggressively.

I am non the wiser!

User
Posted 23 Apr 2018 at 20:25
Isn’t predictive text marvellous? It changed ductal to Ducati!
User
Posted 23 Apr 2018 at 20:33

Hi Ian I can’t have routine scans again till September. My psa then is expected to be 96 !
I have repeat bloods June , where my psa is expected at 48. Not sure if they will want to act then but they’ll have to wait as I have 2 holidays booked :-) ......
I think I’m a way I’ve rocked their protocol by refusing RT. They said themselves it would be non-curative but I guess they can’t go throwing thousands of pounds at me until they have sure proof of advanced diagnosis. Keep well

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2018 at 00:11

Sorry Ido, invasive or non-invasive means whether the cancer has spread from the ducts into neighbouring tissue or it hasn’t. So I think what I was asking you last year was had the ductal cancer stayed in the ducts or had it moved into the prostatic tissue where the adenocarcinoma was?

I think it is probably irrelevant now anyway; the prostate was removed and hopefully all the ductal went with it leaving you only some bits of adeno to be zapped and starved :-)

This might help - p141 https://onlinelibrary.wiley.com/doi/pdf/10.1111/iju.12657

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

User
Posted 24 Apr 2018 at 08:29
Thanks Lyn, i think you’re right that the invasive/non-invasive question is irrelevant now.

I will have a look at the link.

Ian

 
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