Bone Mets - Pain and PSA rise - Advanced or metastatic cancer

User

Posted 04 Sep 2020 at 13:01

Hi,

My dad was diagnosed with metastatic prostate cancer six months ago. The mets showed up in the pelvic bones and right femur. PSA was only 62 to begin with. The only symptom was groin pain. A single dose of radiotherapy cured the pain.

Started hormone treatment immediately. He's a very fit and slim 84 year old but chemo not an option during to age. PSA fell to 1.97 three months into hormone treatment, however at the six month mark, just before his second Decapeptyl (22.5mg) injection it had risen to 4.9. A day or two after the injection he developed quite severe groin pain, where it'd been originally, before the radiotherapy. Now two weeks after his jormkne injection and last PSA test, the new reading has risen to 7.5. Blood tests show the testosterone is low.

A CT and bone scan have been ordered but we have to wait.

It all points towards cancer spread and I'm terrified. Seven months ago he seemed perfectly healthy. I'd hoped he'd get much longer benefit from the hormone treatment but it's only been six months and it already looks like it has spread.

Can anyone offer any advice? Much appreciate.

Rosalie.

User

Posted 18 Feb 2021 at 22:39

Hello

yes my dad has been suffering from breathlessness for the past 8 months which has got progressively worse. He has spread to pelvic lymph nodes but no organs are affected and his heart etc are all healthy.

The breathlessness has always puzzled me has he was extremely fit, non smoker etc so I worried perhaps the cancer had spread to his lungs but it has not.

My dad was on abiraterone last summer for 3 months, his PSA did reduce but sadly the abiraterone did not work for him and this was stopped in November. He was very ill while on this drug combined with the spreading cancer.

He still is breathless on walking but more mobile, good appetite due to a course of palliative radiotherapy.

We were just told the breathless was due to the cancer but that does not really explain it very well!

sorry that probably does not answer the cause for your dad but thought I would share my dad’s experience.

anne

User

Posted 04 Sep 2020 at 20:38

Hi Rosalie, sorry I can't help. I too would have expected HT to have lasted longer. I'm mainly posting to get your post back to the top of the list.

Dave

User

Posted 04 Sep 2020 at 21:17

To keep starting new threads about the same thing makes it difficult for members to reply as they may not see what other replies you have already had.

The pain doesn't necessarily mean it has spread. The fact that the pain is in the same place as before means that the zap of RT to reduce the pain didn't work for very long and the bone tumours are still active; even if there were new bone mets identified in a scan, it wouldn't make any difference to the outcome. It is more concerning that the PSA is rising steadily - that should be the focus right now, particularly if he is at castrate level. You say that his testosterone is low but do you know the actual number? As posted on your other threads, if his cancer has become hormone independent already, you would expect them to add another hormone - usually either bicalutimide, abiraterone or enzalutimide.

For other members, here are Rosalie's other threads on the same problem.

https://community.prostatecanceruk.org/posts/t25599-PSA-rise-during-hormone-treatment#post243232

https://community.prostatecanceruk.org/default.aspx?g=posts&m=244478#post244478

Edited by member 04 Sep 2020 at 21:19 | Reason: to activate hyperlinks

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

User

Posted 18 Feb 2021 at 22:08

I am 53 yrs old and had surgery nearly 6 yrs ago. I’ve literally only just started HT and have deferred it for my own reasons re quality of life over quantity. However I’ve had breathlessness unexplained also for maybe a year. I have extensive spine mets and some rib mets. All scans otherwise clear. I was told with rib mets that the body automatically adjusts to pain and you breathe more shallow , hence the laboured breathing

If life gives you lemons , then make lemonade

User

Posted 18 Feb 2021 at 22:33

Hi Chris,

Thanks so much for your reply. Dad also has spine and ribs mets so that could be part of the problem. It's all such a learning curve.

I hope you're doing well.

I like your quote and I'm going to make some lemonade!

Best wishes.

User

Posted 18 Feb 2021 at 23:18

Dear Rosalie

many thanks for your reply.

I saw on your profile that your dad is 84/85 and so is my dad! He was diagnosed with prostate cancer in 2018 but the hormone injections kept things ok for around 18 months which is quite normal.

I hope the treatment works well for your dad and you get to enjoy lots of quality time with him...hopefully lockdown will be easing over the coming months.

anne

User

Posted 03 Mar 2021 at 14:07

Hello

Are you having a face to face appointment tomorrow? Hopefully things will become clearer for you all.

My dad sadly has not had any face to face meetings (just a telephone call as they problems working zoom) and as his hearing is not good and he does not use the internet not ideal. Yes I think the oncologist was quite frank, basically he apologised that nothing else could be done but just some palliative radiotherapy...he never mentioned how long my dad has left (unless my mum and dad did not tell us!) but the Macmillan mentioned months back in December so like you, we wonder how long we have left.

My dad does not show his emotions too much but yes he was subdued after hearing about the treatment being stopped. I also thought my dad would give up then but the radiotherapy has improved things so I hope they can do something for your dad to give you as much time as possible.

I just hope they can find a cure for this disease one day very soon as it’s very cruel for everyone involved.

hope things go ok for you all tomorrow , please let us know how it goes.

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User

Posted 04 Sep 2020 at 20:38

Hi Rosalie, sorry I can't help. I too would have expected HT to have lasted longer. I'm mainly posting to get your post back to the top of the list.

Dave

User

Posted 04 Sep 2020 at 21:17

To keep starting new threads about the same thing makes it difficult for members to reply as they may not see what other replies you have already had.

For other members, here are Rosalie's other threads on the same problem.

https://community.prostatecanceruk.org/posts/t25599-PSA-rise-during-hormone-treatment#post243232

https://community.prostatecanceruk.org/default.aspx?g=posts&m=244478#post244478

Edited by member 04 Sep 2020 at 21:19 | Reason: to activate hyperlinks

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

User

Posted 10 Sep 2020 at 17:53

Hi,

Dad's chest x-ray showed up nothing but the oncology nurse wasn't able to give me any information about the plevis/leg x-ray. We're still waiting for CT and bone scans. I've asked about going private but been told there'd be little difference in wait time and that he's on the urgent list for both.

In the past week since we saw the oncologist his condition has significantly deteriorated. He's got more pain in the groin, lower back and shoulders. Also very low energy and fatigue. And itchy skin (although that could be something else entirely). He also seems very fed up, but I know pain and worry will do that.

Right now, everything is pointing towards hormone-resistance. I know we must wait for the scan results before moving forward or knowing what the cancer is doing but I'm very worried.

When I asked the nurse today about the efficacy of secondary treatment, she said they normally find that patients who don't respond well to primary treatment rarely respond well to subsequent treatments either.

Not very encouraging but there's no point in false hope.

Does anyone have any knowledge about the efficacy of secondary treatments if first-round treatment has become ineffective after only a few months?

Many thanks.

Rosalie

User

Posted 10 Sep 2020 at 21:59

His rising PSA tells them that his HT isnt working; they don't need to wait for bone scans. Has he been referred to the pain clinic or hospice/ Macmillan team yet? They are usually the best at sorting out pain beds and getting the balance right - it is not really the urology or oncology departments' speciality.

As I have previously posted, you would expect him to be offered enzalutimide or abiraterone next, both drugs are designed for castrate resistant / hormone independent PCa. If there are clinical reasons for him not being offered either, adding bicalutimide or swapping to stilboestrol can work for anything from a few weeks to a couple of years. But yes, generally speaking, if HT fails this quickly then the adjuvant treatments also fail quickly.

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

User

Posted 10 Sep 2020 at 22:01

PS do the doctors or nurses know about the itchy skin? If not, worth calling the nurse back. Did he have a full body scan at the time if diagnosis or just a bone scan?

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

User

Posted 10 Sep 2020 at 22:43

He had an upper body CT and a full body bone scan before diagnosis.

And, yes, I don't know why they're waiting for the scans. The PSA was tested on the day of our oncology appointment but we didn't get the results until a few days later. I assumed we'd be called back as the PSA had risen but we're not actually going to be called back until the scans have been done. Bloods were also taken on the day of oncology visit for kidney and liver function. The oncologist (actually it was a registrar) said they were running those tests in case they need to change the meds.

The docs and nurses don't know about the itch because dad only mentioned it to me this afternoon though. When I checked his skin was quite dry so I applied some moisturizer and he hadn't had much itch since.

He hasn't been referred for palliative care and in fact if hasn't been mentioned yet. We're in the Republic of Ireland and don't have Macmillan but we do have a local hospice.

If secondary treatment doesn't work, what happens then? That might seem like a naive question but is that the end?

User

Posted 18 Feb 2021 at 21:53

Hello,

Dad has been on Zytiga with prednisolone for the past few months after only responding to hormone therapy for about three months before the PSA started to rise and a bone scan showed extensive spread of the bone mets. Thankfully the PSA has come down since he's been on Zytiga. He has developed breathlessness, however and the doctors can't explain the cause. He's slim and has always been extremely fit. His bloods are good and his heart and lungs look healthy. They've suggested that the breathlessness is a side effect of the treatment, but have stated that it's not a very common one.

*The breathlessness did not occur immediately after starting Zytiga but it has been gradually getting worse.

Has anyone else out there experienced breathlessness as a side effect of abiraterone/Zytiga?

Many thanks for any advice or insights.

Best wishes,

User

Posted 18 Feb 2021 at 22:08

If life gives you lemons , then make lemonade

User

Posted 18 Feb 2021 at 22:33

Hi Chris,

Thanks so much for your reply. Dad also has spine and ribs mets so that could be part of the problem. It's all such a learning curve.

I hope you're doing well.

I like your quote and I'm going to make some lemonade!

Best wishes.

User

Posted 18 Feb 2021 at 22:39

Hello

The breathlessness has always puzzled me has he was extremely fit, non smoker etc so I worried perhaps the cancer had spread to his lungs but it has not.

He still is breathless on walking but more mobile, good appetite due to a course of palliative radiotherapy.

We were just told the breathless was due to the cancer but that does not really explain it very well!

sorry that probably does not answer the cause for your dad but thought I would share my dad’s experience.

anne

User

Posted 18 Feb 2021 at 23:10

Hi Anne,

I'm sorry to hear that the abiraterone wasn't a success for your father and that the cancer spread.

It's good to hear that he is more mobile now, though and has a good appetite.

I hope things continue that way for him for a long time.

The breathlessness is indeed a bit of a mystery.

Best wishes,

Rosalie.

User

Posted 18 Feb 2021 at 23:18

Dear Rosalie

many thanks for your reply.

I saw on your profile that your dad is 84/85 and so is my dad! He was diagnosed with prostate cancer in 2018 but the hormone injections kept things ok for around 18 months which is quite normal.

I hope the treatment works well for your dad and you get to enjoy lots of quality time with him...hopefully lockdown will be easing over the coming months.

anne

User

Posted 03 Mar 2021 at 12:22

Hello everyone,

I hope you're all doing well today.

I got some distressing news this morning regarding my dad's cancer.

The treatment has stopped working and they're going to stop it. Dad doesn't know yet. We have an appointment tomorrow and they will inform him. It will crush him.

He's 85 and was diagnosed a year ago with prostate cancer with bone mets. Up until diagnosis, he was fit and healthy. Walking, cycling and working outdoors constantly. It all changed almost overnight although he still walks about a mile most days.

There was no biopsy done, therefore we don't know what type of prostate cancer he has. He only responded to hormone treatment for about three months before his PSA started to rise. He continued with the treatment and was put on abiraterone with prednisolone at the end of October. Now, just a few months in, we learn it's not working even though the PSA is still down.

It seems he either has a rare type of prostate cancer that doesn't produce PSA or he has a combination of "regular" and a rare type.

Can anyone offer me any advice? Although the oncology nurse told me this morning that there's no imminent danger, it feels like it's just a matter of time now.

Many thanks.

Xxx

User

Posted 03 Mar 2021 at 12:38

Dear Rosalie

I am so sorry to hear your news - it's absolutely devastating when this happens and we went through it last year so totally understand your shock.

My dad, who is also 85, had his treatment ( abiraterone) stopped in November last year and was told apart from some palliative radiotherapy there was no other treatment or anything else they could do - we were heart broken and thought this is the start of the end... however he has his 4 sessions of radiotherapy early December and for the past 2 months he is so much better, appetite fully returned, no pain, no liquid morphine needed, less sleeping, more mobile, swelling in leg gone. We are under no illusion that the cancer is still there and will most likely spread at some point but for the moment we have our dad who is doing OK and we never expected that last year.

So please keep hope, every person with cancer is totally different and it sounds like your dad is still fairly mobile so hopefully this will continue on for a long time.

best wishes

Anne

User

Posted 03 Mar 2021 at 13:42

Hi Anne,

Thanks so much for your reply. I'm sorry to hear the treatment also stopped working for your dad but glad he's doing ok.

We'll not know the whole story until tomorrow but I fear the mets are spreading quite quickly. They certainly spread quite extensively during the first hormone cycle before abiraterone was started. If that's the case, I guess his time will be even shorter than if it were a slow growing cancer.

Were the doctors quite up front with your father or did you try to keep certain things from him? I just worry that the facts will crush my father and he might just give up.

Thanks in advance.

Rxxx

User

Posted 03 Mar 2021 at 14:07

Hello

Are you having a face to face appointment tomorrow? Hopefully things will become clearer for you all.

I just hope they can find a cure for this disease one day very soon as it’s very cruel for everyone involved.

hope things go ok for you all tomorrow , please let us know how it goes.

User

Posted 03 Mar 2021 at 17:02

Hi Anne,

We're in Ireland and thankfully, we've been allowed to attend all oncology appointments in person through lockdown. I know it hasn't been the same for all patients so I'm very grateful that we've been able to do that.

I'm now trying to reschedule our appointment for Monday instead of tomorrow because dad's in such good form today and my sister's all agree that we'd be better to wait until after the weekend to tell him.

I will keep you informed.

Thanks again. Xx

User

Posted 04 Mar 2021 at 15:59

Hi,

Dad's appointment has been pushed back until next Tuesday.

I still don't know if the bone scan showed that the mets had gotten worse or spread but I do know that one of the reasons for stopping dad's treatment (abiraterone with prednisolone) is because they're afraid that it's affecting his heart.

Is it common for treatment to be stopped in favour of heart health even if it is still working to control the cancer?

Thanks in advance.

Rosalie.

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Bone Mets - Pain and PSA rise

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