I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Surprised by Chemo + RT for locally advanced PCa

Email this conversation Print this conversation
User
Posted 05 Mar 2023 at 08:08

My OH started this journey Sept 2022.  Urologist stated at the first meeting that he was 99% certain of PCa from high PSA of 264 and the DRE.  Bone scan clear, CT scan showed small volume metastatic left internal iliac lymphadenopathy. Urologist originally told us palliative lifetime HT with Bicalutamide and 6 monthly Decapeptyl. Biopsy followed in Nov 2022. Diagnosis Dec 2022 of locally advanced PCa T3b N1 M0 Gleason 9 (5+4) and referral to oncologist with proposed RT treatment.  March 2023 first meeting with oncologist.  What really surprised me was she proposed 6 x 3 weekly chemo (Docetaxel) followed by 20 x RT sessions as well as the HT for about 3 years with curable intent.  OH is very healthy, no-one would know he had any illness at all, just the expected mild side effects from the HT.  Thinking about all the known side effects of chemo and RT when feeliing so well without knowing why such an aggressive treatment plan is being used for locally advanced PCa.  My thoughts: Am I missing something?  Is it because he is healthy he could survive aggressive treatment?  What happens if we reject chemo and/or RT and rely on HT, knowing at some point that HT could/ will stop working and treatment would be needed.  How important is it to try and achieve curative effect recognising how lucky we are to have this as an option.  At OH's age of late 70's how important is treatment versus quality of life?  I queried the high PSA level for a locally advanced PCa diagnosis and she explained that some cancer cells produce more PSA than others, more dangerous are the cancer cells that don't produce much PSA as it doesn't get picked up.  When she realised we were hesitating on treatment she did say at some point OH would need more treatment but has agreed that we check the PSA level after HT treatment to see how well it has responded as we have not had a repeat test since starting HT.  That may make it easier to agree if treatment is now urgent or if we could wait a bit.  Second oncologist appointment will be in about 4 weeks time and hoping to have a clearer idea of where we are and if we can accept this treatment plan or push back for making the most of quality of life while we knowing the consequences (if that is possible - realise it is difficult to know).  The CT scan also picked up a small renal cell carcinoma not related to PCa and they will keep an eye on that but not surgically remove it until after PCa treatment is complete as healthy kidneys are needed to deal with PCa treatment. Sorry for the ramble but hoping to be as prepared as we can. Probably just thinking needing chemo means we have not yet accepted where we are with this disease.  

User
Posted 16 Mar 2023 at 06:30
That bloke from the internet is at it again!

A fall on HT to less than 1 is a good response indicative of a durable (ie not just 6 months) remission.

If your husband is in good health now you can guarantee his health will not be as good in 3 years time on HT alone.

Upfront chemo and RT are clinically proven to improve outcomes especially if you are in good health when you get them.

You are choosing a path where you are almost certain to die from PC. Instead of a path where you have 6 months aggressive treatment and 2 years HT AND the chance to die of old age.

User
Posted 11 Jun 2024 at 17:27

Update time and it has felt a long 6 months. At our review meeting today OH's PSA was up from 2.3 to 13.8 and testosterone was up from 0.5 to 7.4, we are told as a result of OH declining more HT. The effects of the last HT injection would have' run out' early March 2024. The Oncologist confirmed that the CT scan taken by Urology in Dec 2023 to check on the small kidney cancer detected four new bone cancer spots: right ala sacrum bone and vertebrae of the spine on L3 and T6. This means lifetime Hormone Treatment and incurable cancer, noting there are lots of treatments available to keep the cancer from progressing so don't panic. Radiologist thought these spots would have been there at diagnosis but weren't seen.  OH has agreed to restart Decapeptyl and a month of Bicalutamide to prevent testoterone flare because the testosterone had risen to near normal. Having asked about options of radiation to the four cancer spots, the cancer spots are deemed too small to do that at the moment because the damage from the radiation would be greater than the benefit. OH has progressed from locally advanced to advanced cancer and will have to deal with the side effects from the hormones, which doesn't seem to get easier. I was surprised that the testoterone had risen so quickly. I have updated our profile to capture our journey of not following all parts of the proposed treatment plan and hope it informs others.

All the best to everyone and as always many thanks to all the advice and support provided on this excellent forum.

Edited by member 14 Jun 2024 at 05:24  | Reason: Updated cancer areas once letter from oncologist arrived.

User
Posted 06 Mar 2023 at 10:41

I'm on pretty much the same regime as proposed by your onco, although for recurrence after prostatectomy.  Started with high PSA and lymph node involvement.  Have completed 5/6 chemo sessions and will have RT over 8 weeks daily plus HT (Decapeptyl+Abiraterone) for 3 years.  

The chemo is doable and once you get it done it's done.  Such a high PSA is high risk which I think lends itself to an aggressive treatment approach.  Best of luck.

User
Posted 28 Nov 2023 at 17:30
Time for another update. At diagnosis OH G5+4, T3a N1 M0, PSA 290. Straight on to 6 monthly HT and OH PSA fell to 23 after 4 months on HT. Having declined Chemo, OH had 20 x RT sessions starting May 2023 with a few months gap between HT 6 month injections. Side effects from RT not as bad as side effects from HT. In August 2023 after the RT OH PSA had fallen from PSA 23 to PSA 19, which worreid me a bit as I expected a lower value. Today, which is 6 months after RT started, PSA has fallen to PSA 2.3 - what a great feeling. OH still may decide not have any more HT injections, time will tell, but all of a sudden it feels like we can have 6 months of real life back again until the next blood test. It has been a difficult year but so good to know the 'sub-optimal' treatment choices made appear to have worked (for now - we realise there is increased risk). Take care everyone.
User
Posted 05 Mar 2023 at 13:49

It does sound an aggressive treatment, but the cancer is almost incurable.

All the following ages, time spans and probabilities I quote are rough averages and guesses based on reading posts on here and life experience.

His life expectancy without cancer would be about 87, from 85 onwards QoL is on a rapid decline.

If he had no treatment, cancer symptoms would probably be very unpleasant in a couple of years and probably death at the age of 80.

With the aggressive treatment proposed, QoL during treatment would be OK. I had HT/RT at the age of 53, no big problem. Of course adding in chemo and being 77 might make it a bit tougher. By the age of 80 he would be through treatment and either cured (probably 65%) or the cancer knocked back in its progress by about five years. Either way he will probably have a reasonable QoL from now to 85.

I think no chemo and two year HT are plausible alternatives. QoL during treatment will be a little higher, slightly less chance of osteoporosis from HT. Less chance of cure (probably 50%) if not cured cancer progression probably knocked back two years.

Remember I'm not a medic, everyone's cancer is different and everyone's life is different. I wouldn't want you arguing with an oncologist saying "well some bloke on the internet says we have a 50% chance if... blah, blah ..."

All the above is just to give you an idea of time scales, which years does he want best QoL? How does he want to die (immortality is not on the table)?

Dave

User
Posted 05 Mar 2023 at 17:31

It looks like they are proposing aggressive treatment for your OH.

User
Posted 15 Mar 2023 at 21:49
Hi Schubert, you can certainly ask about adding one of those newer drugs now - some hospitals use them instead of chemo now while others will prefer to hold them back for later.

You are not moving into palliative care so should stay as an open case at oncology although the oncologist may not see him very often while the HT is working. Palliative care is when someone is believed to have less than 6 months to live and / or is no longer having any active treatment. You are nowhere near that stage yet

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

User
Posted 15 Mar 2023 at 22:15

The PSA fall from 264 to 23 in four months is good. I don't know if I would call it excellent, but it is early days. There are men on this forum who's PSA has fallen from similar levels to less than 1.0, but it has taken over six months, sometimes over a year. And some of those men have then continued for many, many years. I don't know if any men have continued for years on HT with a PSA that didn't drop below 10. Maybe LynEyre who has been on the forum for over a decade and remembers everything will know.

I think he has to keep an eye on his PSA as long as it isn't rising that is all that you want. I Would say HT has a bigger impact on quality of life than RT. So he probably shouldn't rule out RT yet.

My inclination would be to try and keep the option of treatment open, but I can see the oncologist asking "if you don't have treatment now, why do you think you might accept it in six months?" Now if you can answer that with something like "if the PSA goes below 1.0 we think it is a weak cancer, and we are prepared to try and kill it with RT" or "if the PSA rises we know we have only one shot, and we'll be prepared to throw everything at it" then I guess the onco may keep the options open.

Dave

User
Posted 20 Aug 2023 at 09:12

Time for an update.  OH has undertaken 20 x RT starting May 2023 and apart from difficulty in getting his bowels in the right state during 3 CT planning sessions his side effects were mainly increasing fatigue and an irritated bladder.  His 2nd 6 month decapeptyl injection was due mid-May and it seemed so difficult in getting it along with unpleasant side effects he decided to decline any further HT.  Last week we had a follow up meeting with the oncologist 9 weeks after the RT ended and his PSA had reduced from 23 to 19.8, so not that good although we realise RT will continue to have an impact.  Consultant pressured OH to restart HT considering he has declined chemo, is high risk (Gleason 9, T3b N1 Mo) and this is a sub-optimal result from the RT.  If he wouldn't take more HT then why would he monitor PSA etc.  He has agreed to more HT although has to wait a few weeks now for a nurse to be able to inject him.   He has also been referred for further invesigation for a renal cell carcinoma picked up in his original CT scan.  Fingers crossed if the renal cell carcinoma (2.6cm) hasn't grown it will just be monitored under active surveillance. 

Take care everyone. 

User
Posted 30 Aug 2023 at 10:24

Thank you for keeping us updated. My Husband has exactly the same results with the exception of his PSA which was 134.6 and he's 58 years old. We found out in Oct 2022. Started HT immediately, every 12 weeks for three years. Had 6 rounds of chemo which finished on the 19th of July 2023. Currently waiting for RT start date which we were told would be 3 - 4 weeks after CT planning session but due to the strikes in the UK they now have a backlog. Fingers crossed it doesn't spread while we're waiting. In the past week his back keeps locking and he has a constant dull ache. Peeing more often and hot sweats have returned.

Hope all goes well, will keep following you xx

User
Posted 30 Aug 2023 at 15:34

HT definitely made a big impact to my OH. After three Zoladex implants he went from 134.6 to 12.9. After all six chemo sessions he was at 3.3. Hopefully RT will bring that down further. Good luck with the next HT injection.

User
Posted 30 Aug 2023 at 17:33

Schubert, as a 76 year old I've been in a similar position to your husband with a G9 T3bN1M0 diagnosis, though my psa was much lower.

I went for the RT/HT treatment over a 2 year period and while it was tough going at times I'm very glad I chose that path. You might find/decide to shorten the period of time your husband stays on HT. The statistics support early use of HT post RT but the gains are less clear as time goes on. Beyond 18 months other factors might come into the equation, like the side effects of the HT treatment he's taking and of course quality of life.

There are not many people who find HT easy, so while it might be testing, when your husband gets out the other side life can return to "normal" if the treatment has been successful.

All the best for your husband's ongoing treatment.

Jules

 

 

 

 

 

 

 

 

 

th

User
Posted 28 Nov 2023 at 17:50

Great news! We get our results on the 5th Dec. Fingers crossed 🤞 xx 

User
Posted 11 Jun 2024 at 21:38

Hi Schubert,

Sorry to hear about OH’s setback, hopefully starting the HT again will bring his PSA down again. It’s a difficult decision to make when stopping HT and I can empathise with your OH. For some men HT seriously affects their QOL, others seem to escape without any real side-effects and nobody seems to know why. I stopped HT after 2 years, 4th July is MY Independence Day when my current jab runs out and I’m not getting any more….for the moment anyway. My PSA though is now undetectable and my Onco was happy for me to stop Prostap, I would not have done it without his consent as I want to give myself the best chance of NOT being on this poison for life.

Of course, when my Testosterone starts to come back that’s when I’ll know if it’s worked and it’s always at the back of my mind it might not have killed everything. So, I’m living in the moment, going on lost of holidays and having lots of fun…which keeps me sane. I am looking forward though to feeling like a man again🤞

I wish your OH all the best moving forward.

Onwards and Downwards(PSA)

Derek

Show Most Thanked Posts
User
Posted 05 Mar 2023 at 13:49

It does sound an aggressive treatment, but the cancer is almost incurable.

All the following ages, time spans and probabilities I quote are rough averages and guesses based on reading posts on here and life experience.

His life expectancy without cancer would be about 87, from 85 onwards QoL is on a rapid decline.

If he had no treatment, cancer symptoms would probably be very unpleasant in a couple of years and probably death at the age of 80.

With the aggressive treatment proposed, QoL during treatment would be OK. I had HT/RT at the age of 53, no big problem. Of course adding in chemo and being 77 might make it a bit tougher. By the age of 80 he would be through treatment and either cured (probably 65%) or the cancer knocked back in its progress by about five years. Either way he will probably have a reasonable QoL from now to 85.

I think no chemo and two year HT are plausible alternatives. QoL during treatment will be a little higher, slightly less chance of osteoporosis from HT. Less chance of cure (probably 50%) if not cured cancer progression probably knocked back two years.

Remember I'm not a medic, everyone's cancer is different and everyone's life is different. I wouldn't want you arguing with an oncologist saying "well some bloke on the internet says we have a 50% chance if... blah, blah ..."

All the above is just to give you an idea of time scales, which years does he want best QoL? How does he want to die (immortality is not on the table)?

Dave

User
Posted 05 Mar 2023 at 13:55

Good questions. Your OH is late 70s and in good health.  I've read that chemo for PCa isn't as tough as other chemo.  Different people react differently though.

Curative isn't guaranteed. With a 5 in the Gleason and t3, curative aim needs powerful treatment.   If it was me I'd go for it and hope to reach 90. 

If the treatment becomes tough he can change track.

Being offered RT would be a bonus in my opinion. I've not experienced any of it though. All the best, Peter

User
Posted 05 Mar 2023 at 14:26

Thank you for responding, this is all really helpful and gives us some clear scenarios we can talk through - we have time. We aim to make sure we have researched fully, looked at outcomes and feel comfortable with the consequences and I will support OH whatever he decides.    

User
Posted 05 Mar 2023 at 14:28

Thanks Peter.  The list of side effects from chemo is causing some concern - I feel a flow-chart on decision making and consequences coming on.... Will try and do that.

User
Posted 05 Mar 2023 at 17:31

It looks like they are proposing aggressive treatment for your OH.

User
Posted 06 Mar 2023 at 10:41

I'm on pretty much the same regime as proposed by your onco, although for recurrence after prostatectomy.  Started with high PSA and lymph node involvement.  Have completed 5/6 chemo sessions and will have RT over 8 weeks daily plus HT (Decapeptyl+Abiraterone) for 3 years.  

The chemo is doable and once you get it done it's done.  Such a high PSA is high risk which I think lends itself to an aggressive treatment approach.  Best of luck.

User
Posted 06 Mar 2023 at 12:09

Thanks Jellies, good to know of your experience and the very best of luck with your treatment.  Going to talk through with OH  where he wants his best years re: quality of life and wondering about the difficulty of coming to terms with having an aggressive cancer when feeling so well.  This community is so supportive, thank you everyone!  It helps so much to have somewhere to communicate. 

User
Posted 15 Mar 2023 at 12:52

An update.  Test result has just come in at PSA 23 down from PSA 264 in four months from the initial Decapeptyl 6 month injection.  OH has decided he will not accept Chemo and he does not want RT, realising this means no curative pathway option.  With a diagnosis of G5+4, T3b N1 M0 he wants quality of life now aged 77 not later.  As we prepare for our next meeting with the Oncologist on 28 March useful to know if a reduction down to PSA 23 is a good result and as expected after 4 months of HT.  Certainly it is a relief that the PSA has come down and the PCa is responding to HT but is this enough to continue with Decapeptyl and discuss with the Oncologist if Abiraterone, Enzalutamide or Apalutamide could be an option now or in the future as Decapeptyl stops working. I guess I am working out and preparing our views and queries.  Also would we get signed off by Oncology if we reject both Chemo and RT and be moved to palliative care?  

User
Posted 15 Mar 2023 at 21:49
Hi Schubert, you can certainly ask about adding one of those newer drugs now - some hospitals use them instead of chemo now while others will prefer to hold them back for later.

You are not moving into palliative care so should stay as an open case at oncology although the oncologist may not see him very often while the HT is working. Palliative care is when someone is believed to have less than 6 months to live and / or is no longer having any active treatment. You are nowhere near that stage yet

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

User
Posted 15 Mar 2023 at 22:15

The PSA fall from 264 to 23 in four months is good. I don't know if I would call it excellent, but it is early days. There are men on this forum who's PSA has fallen from similar levels to less than 1.0, but it has taken over six months, sometimes over a year. And some of those men have then continued for many, many years. I don't know if any men have continued for years on HT with a PSA that didn't drop below 10. Maybe LynEyre who has been on the forum for over a decade and remembers everything will know.

I think he has to keep an eye on his PSA as long as it isn't rising that is all that you want. I Would say HT has a bigger impact on quality of life than RT. So he probably shouldn't rule out RT yet.

My inclination would be to try and keep the option of treatment open, but I can see the oncologist asking "if you don't have treatment now, why do you think you might accept it in six months?" Now if you can answer that with something like "if the PSA goes below 1.0 we think it is a weak cancer, and we are prepared to try and kill it with RT" or "if the PSA rises we know we have only one shot, and we'll be prepared to throw everything at it" then I guess the onco may keep the options open.

Dave

User
Posted 16 Mar 2023 at 06:30
That bloke from the internet is at it again!

A fall on HT to less than 1 is a good response indicative of a durable (ie not just 6 months) remission.

If your husband is in good health now you can guarantee his health will not be as good in 3 years time on HT alone.

Upfront chemo and RT are clinically proven to improve outcomes especially if you are in good health when you get them.

You are choosing a path where you are almost certain to die from PC. Instead of a path where you have 6 months aggressive treatment and 2 years HT AND the chance to die of old age.

User
Posted 06 Apr 2023 at 21:08

Updating and hoping it helps others as to where we are.  We have a few questions and expanded details are below:

Q1: What happens if you decline ADT hormone therapy (HT) once RT has finished. OH has had 1 x 6 month injection next due May 2023 which is when we think his RT starts.  Effects of HT last another 6 months.  Could he have no more?  PSA went from 264 to 23 in 4 months diagnosed T3b N1 M0.  RT x 20 starts in a month.  Consultant suggested 3 years HT is needed.  Next 6 month injection due May but he may decline it - what would that mean?  Is that really a bad decision?

Q2: If RT kills the PCa cells why do you need longer hormone treatment? Does N1 change things?

Q3: OH has declined chemo with an N1 diagnosis - he cannot accept chemo is needed before RT if RT kills the cancer cells.  Why is chemo not offered after RT and when needed, not that I am sure he would accept it and aged 77 he will not accept the side effects. 

Details for those interested: We had our latest meeting on 28 March 2023 with the oncologist at a local hospital, not our regional clinic, and had much more time to talk.  OH stated clearly he would not accept chemo and then we explored in more detail about the RT option.  We were shown OH's CT scan of prostate, bladder, bowel and the renal cell carcinoma which really helped to be able to discuss concerns and options.  In our previous post Dave mentioned earlier that HT has a bigger impact on quality of life than RT and OH moved to considering how to progress RT and to stop the HT as soon as possible, as he doen't like the side effects already.  Talking about bowel problems the oncologist explained that if OH could get through the CT planning session he would be fine for RT and into a potential 'PCa cure'.  This discussion made a big difference.  Having signed RT consent form OH then had an informative telephone call from radiology about how to prepare for the CT planning RT session.  At this point we had not had the letter from the hospital, were not aware of the date or additional information, needed to change the time etc.  We are a week later and still do not this but need to move on.  CT planning RT session is Wed 12 April.  GP has still today not received the info from the consultant about the need for Movital and mini-enemas but with Easter holidays we just went to our local pharmacy and bought these ourselves. 

At this point and as a reminder to all those supporting OH's with PCa, my anxiety levels really increased.  Message to myself - look after yourself with whatever it takes to keep okay and focused and to keep talking.  I guess we have moved from acceptng HT to accepting RT and rejecting HT.  We haven't yet told any friends and family of this situation as OH is very private but I am so glad I can ask you all my questions here - thank you all for your support and understanding.

User
Posted 20 Aug 2023 at 09:12

Time for an update.  OH has undertaken 20 x RT starting May 2023 and apart from difficulty in getting his bowels in the right state during 3 CT planning sessions his side effects were mainly increasing fatigue and an irritated bladder.  His 2nd 6 month decapeptyl injection was due mid-May and it seemed so difficult in getting it along with unpleasant side effects he decided to decline any further HT.  Last week we had a follow up meeting with the oncologist 9 weeks after the RT ended and his PSA had reduced from 23 to 19.8, so not that good although we realise RT will continue to have an impact.  Consultant pressured OH to restart HT considering he has declined chemo, is high risk (Gleason 9, T3b N1 Mo) and this is a sub-optimal result from the RT.  If he wouldn't take more HT then why would he monitor PSA etc.  He has agreed to more HT although has to wait a few weeks now for a nurse to be able to inject him.   He has also been referred for further invesigation for a renal cell carcinoma picked up in his original CT scan.  Fingers crossed if the renal cell carcinoma (2.6cm) hasn't grown it will just be monitored under active surveillance. 

Take care everyone. 

User
Posted 30 Aug 2023 at 10:24

Thank you for keeping us updated. My Husband has exactly the same results with the exception of his PSA which was 134.6 and he's 58 years old. We found out in Oct 2022. Started HT immediately, every 12 weeks for three years. Had 6 rounds of chemo which finished on the 19th of July 2023. Currently waiting for RT start date which we were told would be 3 - 4 weeks after CT planning session but due to the strikes in the UK they now have a backlog. Fingers crossed it doesn't spread while we're waiting. In the past week his back keeps locking and he has a constant dull ache. Peeing more often and hot sweats have returned.

Hope all goes well, will keep following you xx

User
Posted 30 Aug 2023 at 15:05

Originally Posted by: Online Community Member

Thank you for keeping us updated. My Husband has exactly the same results with the exception of his PSA which was 134.6 and he's 58 years old. We found out in Oct 2022. Started HT immediately, every 12 weeks for three years. Had 6 rounds of chemo which finished on the 19th of July 2023. Currently waiting for RT start date which we were told would be 3 - 4 weeks after CT planning session but due to the strikes in the UK they now have a backlog. Fingers crossed it doesn't spread while we're waiting. In the past week his back keeps locking and he has a constant dull ache. Peeing more often and hot sweats have returned.

Hope all goes well, will keep following you xx

Good luck!  At diagnosis OH was 290 and this went down to 23.8 after 6 months of HT.  When PSA was 19.8 after 20 x RT sessions the consultant said it may be that his 'resting' PSA level is about 20.  Not sure about that though, I was hoping he would go much lower. 2nd HT injection is on Monday.

User
Posted 30 Aug 2023 at 15:34

HT definitely made a big impact to my OH. After three Zoladex implants he went from 134.6 to 12.9. After all six chemo sessions he was at 3.3. Hopefully RT will bring that down further. Good luck with the next HT injection.

User
Posted 30 Aug 2023 at 17:33

Schubert, as a 76 year old I've been in a similar position to your husband with a G9 T3bN1M0 diagnosis, though my psa was much lower.

I went for the RT/HT treatment over a 2 year period and while it was tough going at times I'm very glad I chose that path. You might find/decide to shorten the period of time your husband stays on HT. The statistics support early use of HT post RT but the gains are less clear as time goes on. Beyond 18 months other factors might come into the equation, like the side effects of the HT treatment he's taking and of course quality of life.

There are not many people who find HT easy, so while it might be testing, when your husband gets out the other side life can return to "normal" if the treatment has been successful.

All the best for your husband's ongoing treatment.

Jules

 

 

 

 

 

 

 

 

 

th

User
Posted 28 Nov 2023 at 17:30
Time for another update. At diagnosis OH G5+4, T3a N1 M0, PSA 290. Straight on to 6 monthly HT and OH PSA fell to 23 after 4 months on HT. Having declined Chemo, OH had 20 x RT sessions starting May 2023 with a few months gap between HT 6 month injections. Side effects from RT not as bad as side effects from HT. In August 2023 after the RT OH PSA had fallen from PSA 23 to PSA 19, which worreid me a bit as I expected a lower value. Today, which is 6 months after RT started, PSA has fallen to PSA 2.3 - what a great feeling. OH still may decide not have any more HT injections, time will tell, but all of a sudden it feels like we can have 6 months of real life back again until the next blood test. It has been a difficult year but so good to know the 'sub-optimal' treatment choices made appear to have worked (for now - we realise there is increased risk). Take care everyone.
User
Posted 28 Nov 2023 at 17:50

Great news! We get our results on the 5th Dec. Fingers crossed 🤞 xx 

User
Posted 11 Jun 2024 at 17:27

Update time and it has felt a long 6 months. At our review meeting today OH's PSA was up from 2.3 to 13.8 and testosterone was up from 0.5 to 7.4, we are told as a result of OH declining more HT. The effects of the last HT injection would have' run out' early March 2024. The Oncologist confirmed that the CT scan taken by Urology in Dec 2023 to check on the small kidney cancer detected four new bone cancer spots: right ala sacrum bone and vertebrae of the spine on L3 and T6. This means lifetime Hormone Treatment and incurable cancer, noting there are lots of treatments available to keep the cancer from progressing so don't panic. Radiologist thought these spots would have been there at diagnosis but weren't seen.  OH has agreed to restart Decapeptyl and a month of Bicalutamide to prevent testoterone flare because the testosterone had risen to near normal. Having asked about options of radiation to the four cancer spots, the cancer spots are deemed too small to do that at the moment because the damage from the radiation would be greater than the benefit. OH has progressed from locally advanced to advanced cancer and will have to deal with the side effects from the hormones, which doesn't seem to get easier. I was surprised that the testoterone had risen so quickly. I have updated our profile to capture our journey of not following all parts of the proposed treatment plan and hope it informs others.

All the best to everyone and as always many thanks to all the advice and support provided on this excellent forum.

Edited by member 14 Jun 2024 at 05:24  | Reason: Updated cancer areas once letter from oncologist arrived.

User
Posted 11 Jun 2024 at 21:38

Hi Schubert,

Sorry to hear about OH’s setback, hopefully starting the HT again will bring his PSA down again. It’s a difficult decision to make when stopping HT and I can empathise with your OH. For some men HT seriously affects their QOL, others seem to escape without any real side-effects and nobody seems to know why. I stopped HT after 2 years, 4th July is MY Independence Day when my current jab runs out and I’m not getting any more….for the moment anyway. My PSA though is now undetectable and my Onco was happy for me to stop Prostap, I would not have done it without his consent as I want to give myself the best chance of NOT being on this poison for life.

Of course, when my Testosterone starts to come back that’s when I’ll know if it’s worked and it’s always at the back of my mind it might not have killed everything. So, I’m living in the moment, going on lost of holidays and having lots of fun…which keeps me sane. I am looking forward though to feeling like a man again🤞

I wish your OH all the best moving forward.

Onwards and Downwards(PSA)

Derek

User
Posted 11 Jun 2024 at 22:13

Thanks Derek and I have really appreciated your input on this forum.  Good luck for your independence day.  PS it is really easy for the OH's to know when testosterone returns! Have fun and good luck.

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK