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

Notification

Error

Dad was diagnosed Stage IV. Need help

Email this conversation Print this conversation
User
Posted 18 Feb 2021 at 00:33

Hi, 

I just joined yesterday and this is my first post. This community has been very helpful and gives hope to me.

So here it is, Dad was diagnosed with PCa Stage IV a week ago. We are so depressed especially my mom and I.

We love our father so much and he's so kind. He is 63 and symptoms are often pee at night and sometimes hard to pee. Need your advise on what to do moving forward. :(

His findings are PSA level 56. Gleason score 4+4=8, however Urologist said he is considering it +1 so gleason score 9(not sure why?). CT Scan is negative however bone scan has osteoblastic lesion on LEFT hip joint and LEFT pubis. Right prostate is benign as per the biopsy.

He was recommended to take bicalutamide while we he is waiting for our decision regarding the treatment offered by the Urologist. Thought he will do surgery but bone mets appeared so he suggested to do Hormonal Therapy instead by using Zytiga or Xtandi together with zoledronic acid for bone mets.

1. Do you think we need 2nd opinion for this?

2. Are the lab results always correct?

3. Should we proceed on that treatment? Doctor said those meds are quiet expensive.

Note: Dad is so afraid of chemo and surgery. He is well fitted with good diet.

User
Posted 18 Feb 2021 at 14:09
Hhhmm - do the doctors make any profit from recommending a very expensive drug?

I would be a little cautious - men in the UK (where there is a national health service to pick up the bill) with your dad's diagnosis would usually:

- have bicalutimide for the first 2 or 4 weeks to prevent tumour flare

- then move to hormone injections such as Prostap or Zoladex (usually 3 monthly) or decapeptyl (3 or 6 monthly)

- before Covid, might also have been recommended to have 6 or 10 rounds of docetaxel (a type of chemotherapy)

They would not normally go straight on to Xtandi or Zytiga, and certainly not without hormone injections. Covid has changed things a little in that men in the UK are allowed at the moment to start on Zytiga (because chemo is more risky in a pandemic) but with the hormone injection, not on its own.

My understanding is that men in India, the Philippines, etc have an orchiectomy (surgical removal of the testicles) if they cannot afford the hormones.

Zoledronic acid (Zometa) has its own risks so it is important that he sees a dentist before starting it.

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

User
Posted 19 Feb 2021 at 06:45

Hi,  Take a look at my profile.  I have documented dates and medicines that I have taken with PSA results along the journey and my dx is not too dissimilar.

Hope it helps to answer some of your questions.

User
Posted 19 Feb 2021 at 09:35

Originally Posted by: Online Community Member

Hello. I've looked on your profile and results looks very good with just span of few months. Felt better knowing this. I also read from your profile that this was locally advanced? Just want to clarify if you have bone mets or in the lymp nodes?

Jay's diagnosis was T3b N1 M1b - the N1 means it has spread to lymph nodes and the M1b means it has spread to bone. The T3b means it has broken through the outer covering of the prostate gland.

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

User
Posted 01 Mar 2021 at 08:30
No, he won't be on HT for life. At some point the cancer will adapt and become resistant to the hormones. That may be a matter of months or, more commonly, several years. When the cancer does become hormone-resistant there are many other treatments available. Your Dad should be with you for years to come.

Best wishes,

Chris

Show Most Thanked Posts
User
Posted 18 Feb 2021 at 09:24
I'm guessing that you're not in the UK since you comment on the price of treatment? It would be helpful to know which country you are in.

Best wishes,

Chris

User
Posted 18 Feb 2021 at 09:31

Hello, yes i am not from UK. I am from Philippines and insurance here is not quiet good. I find this forum very very helpful and this was the first place i see hope for my father's situation. 

User
Posted 18 Feb 2021 at 14:09
Hhhmm - do the doctors make any profit from recommending a very expensive drug?

I would be a little cautious - men in the UK (where there is a national health service to pick up the bill) with your dad's diagnosis would usually:

- have bicalutimide for the first 2 or 4 weeks to prevent tumour flare

- then move to hormone injections such as Prostap or Zoladex (usually 3 monthly) or decapeptyl (3 or 6 monthly)

- before Covid, might also have been recommended to have 6 or 10 rounds of docetaxel (a type of chemotherapy)

They would not normally go straight on to Xtandi or Zytiga, and certainly not without hormone injections. Covid has changed things a little in that men in the UK are allowed at the moment to start on Zytiga (because chemo is more risky in a pandemic) but with the hormone injection, not on its own.

My understanding is that men in India, the Philippines, etc have an orchiectomy (surgical removal of the testicles) if they cannot afford the hormones.

Zoledronic acid (Zometa) has its own risks so it is important that he sees a dentist before starting it.

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

User
Posted 18 Feb 2021 at 14:31

Thank you for that informative reply. Doctor will not make any profit on the medicines as we are the one who will directly buy using their prescription. 

will try to research more on hormone injection. Do you have any input why it is needed first before taking Zytiga? 

urologist said we can consider orchiectomy as the last option. Didn't realize before how much hormone therapy cost especially here in Philippines and our health system isn't really good. Zytiga or xtandi will surely affect our financial needs if it needs to be taken for 2 years or more.

Any advise if we should worry that cancer cells will grow up or even spread more since haven't started the treatment since diagnosed last week? Kinda worry while trying to learn before we proceed with the treatment. It's difficult for us on how we should proceed. We are also scheduled for 2nd opinion tomorrow to other urologist using his recent results. Looking for more hope on this community. 

User
Posted 18 Feb 2021 at 16:36
Hormone injections block the production of testosterone, which in turn starves the cancer. Usually, the man has the normal (and cheaper) HT until it stops working and then Xtandi or Zytiga is added, which can delay the progession of the cancer for another few years. Having the Xtandi / Zytiga now means he doesn't have that option later - when it fails, the normal HT can't be added because it just won't work.

A delay of a few days or weeks won't make any difference now - your dad may have had this cancer for many years. As soon as he starts treatment, it will halt the spread.

Zytiga and Xtandi each cost about £3000 per month in the UK - not sure what that equates to in the Philippines but perhaps it is cheaper there?

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

User
Posted 19 Feb 2021 at 00:34

He is taking bicalutamide for 2 week already. Then after seeing he has bone mets, doctor wants us to think that Zytiga or Xtandi then zoledronic acid for this bones. I think he is not offered to have hormone injections. I will clarify with the Uro this weekend.

I think Zytiga costs here around 70-100 thousand pesos a month. a bit cheaper than in UK but that amount here in PH compared to our job rates isn't that great to cover that expense. 

After hormone therapy alone, do you think when will be the first PSA test we should consider? Apologize if i have too much questions as i still can't sleep well thinking all of this.

Thanks.

User
Posted 19 Feb 2021 at 06:45

Hi,  Take a look at my profile.  I have documented dates and medicines that I have taken with PSA results along the journey and my dx is not too dissimilar.

Hope it helps to answer some of your questions.

User
Posted 19 Feb 2021 at 07:21

Hello. I've looked on your profile and results looks very good with just span of few months. Felt better knowing this. I also read from your profile that this was locally advanced? Just want to clarify if you have bone mets or in the lymp nodes?

User
Posted 19 Feb 2021 at 07:34

Hi,

Yes I have bone mets in one location, which is the right pelvis bone and one lymph node which was enlarged at diagnosis.

Jay

User
Posted 19 Feb 2021 at 09:35

Originally Posted by: Online Community Member

Hello. I've looked on your profile and results looks very good with just span of few months. Felt better knowing this. I also read from your profile that this was locally advanced? Just want to clarify if you have bone mets or in the lymp nodes?

Jay's diagnosis was T3b N1 M1b - the N1 means it has spread to lymph nodes and the M1b means it has spread to bone. The T3b means it has broken through the outer covering of the prostate gland.

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

User
Posted 01 Mar 2021 at 04:08

Hello just came back to this thread for update and hopefully feedback from you. I cannot do private message due to policy of newly registered users.

We had our 2nd opinion with a top notch Urologist here in PH and he examined my Dad using the latest result we have from the first doctor. 

He recommend to take injection using Pamorelin(Triptorelin) for my Dad and it is for 3 months. My dad already took bicalutamide for 4 weeks and he said we can stop bicalutamide and let Pamorelin do the work.

After a month, we will be having a PSA test to see the outcome. If the PSA will get lower and will work for him, does it mean he will inject that Pamorelin for life? Are we going to have RT or other treatments aside from HT?

He also said CT scan is bit suspicious because it's clear while on bone scan he has one spot on left pubis and left hip joint?

User
Posted 01 Mar 2021 at 08:30
No, he won't be on HT for life. At some point the cancer will adapt and become resistant to the hormones. That may be a matter of months or, more commonly, several years. When the cancer does become hormone-resistant there are many other treatments available. Your Dad should be with you for years to come.

Best wishes,

Chris

User
Posted 01 Mar 2021 at 14:45

Originally Posted by: Online Community Member

If the PSA will get lower and will work for him, does it mean he will inject that Pamorelin for life? Are we going to have RT or other treatments aside from HT?

He also said CT scan is bit suspicious because it's clear while on bone scan he has one spot on left pubis and left hip joint?

Yes, he will be on Pamorelin for life unless he decides to have his testicles removed. If the bone mets are confirmed, there is no point him having radiotherapy or surgery because it has already spread so he will have this hormone until it stops working and then they will add other hormones for as long as they keep being effective. 

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

User
Posted 01 Mar 2021 at 15:24

It is sad and depressing that we only have that option. I am scared first line of HT will stop working and we can't afford adding zytiga or xtandi. Is there any man you know who has bone mets but still able to make it for decades with quality of life? It has been over a month but still hard to accept that my dad's situation can't be curable. :(

User
Posted 01 Mar 2021 at 18:25
The average life expectancy in the UK for a man who is diagnosed with advanced prostate cancer is 5 to 6 years. I'm afraid it's unrealistic to expect him to live for decades, although many men make it to 10 years.

Sorry,

Chris

User
Posted 01 Mar 2021 at 18:52

My dad was diagnosed with advanced prostate cancer in 2018 and had the hormone injections for 15 to 16 months successfully...then stopped working and cancer spread to lymph nodes, pretty ill for next 6 months but chemo drug may have added to it.

We did not sadly expect my dad to make Christmas 2020 as treatments not working and stopped end of November. However he got 5 sessions of palliative radiotherapy and the response has been amazing, not much pain so no oral morphine needed, Lymphedema gone (sorry not sure correct spelling but swelling from cancer in lymph nodes), apetite returned and much more mobile.

From experience all I can add is cancer is very different for each person, and even when one doctor might say one thing or give up.... never give up, sadly cancer is different for every person and really modern day doctors need to wake up to this fact.

I would say (and I know how hard this is) try and spend as much quality time with your dad (and mum)...all our time is limited as we never know what’s coming.

Its a very horrible thing, seeing your parent become ill, and I am currently going through it...just be there 

x

 

User
Posted 19 May 2021 at 07:18

It's been 3 months since I posted here. Just want to have your feedback regarding the PSA result of my dad. He started injecting Pamorelin last Feb 27, 2021, 2nd dose will be this May 27, 2021. 

Before starting treatment, his PSA was 56.2 with one spot of bone mets on pubis, gleason 9, and now after almost 3 months, PSA declined to 0.6 and we are glad of the result. His condition looks normal with normal peeing schedule and no pain at all.

Do you think it's good to have Pamorelin injection to continue even he has that PSA low? or should we consider intermittent HT? I am also afraid of the reason why some got hormone resistant with ADT.

I will appreciate your feedback.

 

User
Posted 30 Aug 2024 at 07:52

Hi my dads just been diagnosed with locally advanced prostate cancer I saw u had to and you are doing well he’s started the hormone tablets yesterday then will have first injections next Friday all I do is search the internet but that can be one very scary 😟 he had a ct scan on weds I’m hoping it’s not spread Any where hope you are doing ok 👍 

 
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 ▲
©2024 Prostate Cancer UK