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Salvage radiotherapy

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User

Posted 14 Aug 2017 at 22:00

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 04:21

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.

Ido4

User

Posted 23 Apr 2018 at 11:09

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

Ido4

User

Posted 23 Apr 2018 at 11:56

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 19:20

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,

Ido4

User

Posted 23 Apr 2018 at 19:24

“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!

Ido4

User

Posted 23 Apr 2018 at 19:25

Isn’t predictive text marvellous? It changed ductal to Ducati!

Ido4

User

Posted 23 Apr 2018 at 19:33

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 23 Apr 2018 at 23:11

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 07:29

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

Ido4

User

Posted 26 Apr 2018 at 11:09

Any thoughts on my ever changing his mind oncologist now proposing to stop my HT after two years total and not two years after the end of radiotherapy?

Thanks, Ian

Ido4

User

Posted 26 Apr 2018 at 17:46

How many months' difference would that be? I think your onco is perhaps quite impatient by nature?

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

User

Posted 26 Apr 2018 at 19:36

4 months less time on HT.

Ido4

User

Posted 26 Apr 2018 at 20:10

Well some oncos give SRT without any HT at all, while traditionally it was given with 6 months HT. John should have had 12 months but stopped after 6 because he hated how it made him feel. You are in a slightly different situation where SRT was given despite the onco believing you had micromets - on the one hand, the extra 4 months might be useful but on the other, the onco may be keen to see whether and how quickly your PSA rises. If it does rise, you will be on HT long term so perhaps giving your body an early break is no bad thing?

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

User

Posted 26 Apr 2018 at 20:47

Thanks Lyn, I don’t like the side effects of the HT either. It’s true that I and my onco will only know the answer to the question once I stop the HT.

I just wondered if there was any advantage to staying on the HT a bit longer. He did say two years post SRT initially.

The plan before SRT was agreed to was to be on intermittent HT.

if there isn’t a medical advantage to stay on it longer then a break from it would be good.

I’m just really unsure and nervous about making sure I and the medics do the best we can to keep things at bay.

Ido4

User

Posted 08 Aug 2018 at 17:59

A quick update, PSA measured 1/8/18 still undetectable (<0.1).

I am waiting for a sigmoidoscopy as an MRI showed some ”thickening “ of tissue in the rectum, probably caused by radiation damage but oncologist wants to check.

I am due my last PROSTAP 3 injection (for now) on 11th October with PSA tested 1/11/18 and 1/2/19.

Still struggling with hot flushes, fatigue but golfing and walking for exercise.

I see oncologist again on 15/10/18.

Best wishes to all.

Ian

Ido4

User

Posted 08 Aug 2018 at 18:06

Scores on the doors good. Long may it continue!

If life gives you lemons , then make lemonade

User

Posted 08 Aug 2018 at 18:51

Fantastic news Ido x

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

User

Posted 08 Aug 2018 at 20:33

Well done, Ian. It’s, hopefully, a long slog for us all, but latest figures look very encouraging. After finishing SRT last December, my bowel movements recently have become quite alarming at times and I think it must be a side effect of the radiotherapy. Have upped my fibre intake and thankfully it’s settled down. Don’t see my Oncologist until late October, but at one stage I thought I might have to book an earlier appointment with her. Good luck with your next blood test in November, Ian.

User

Posted 08 Aug 2018 at 20:53

Hi Ian

Good news concerning PSA and long may it continue.

I had a hernia op last year and the surgeon said that it took a bit longer due to thickening of some of the layers as a result of RT so it can have an effect.

Hope they sort things for you.

Kind regards

Kevan

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