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Dad's first Oncology appointment

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User
Posted 09 Aug 2017 at 22:04
Hello all, this is my first ever post and I'd really appreciate some thoughts and advice.

My Dad, 65, has recently been diagnosed with prostate cancer that has spread to his spine. At that point PSA was 26. He was started on Degarelix a few days after diagnosis, and today, about 2 weeks later, he had a first meeting with his oncologist.

The oncologist has suggested that Dad gets straight onto chemo (Docetaxel) alongside the Degarelix - I know some studies have suggested this is a good thing, but I do have some concerns and just wanted to hear people's thoughts.

They haven't given Dad a Gleason score as apparently there isn't any point in doing a prostate biopsy as in the oncologists words 'we know what it is'. Is that true? Are there times when it doesn't really matter what the Gleason score is? Is it a bad sign that it is not deemed important?

Also I asked my Dad to raise the possibility of early use of abiraterone/zytiga as we have all seen the recent groundbreaking results from the STAMPEDE trial about the benefits. Apparently the oncologist said that NICE had not granted a licence for abiraterone yet and so this wasn't possible. Is this correct? I thought that abiraterone was available but that this was just a new approach in how early it was introduced. I'm worried my Dad is gonna miss out on what sounds like a bit of a gamechanger in terms of prostate cancer treatment.

Finally my Dad also had a pelvic MRI at the end of last week which said that there was no evidence of any lymph or bone mets in his pelvis (surely a good thing). My Dad had to show this report to the oncologist who apparently had no knowledge the scan even occurred but even after reading it said 'well, it's neither good news or bad news'. Is that right? Im sure it doesn't change the fact that this is a serious situation, but surely it gives a certain amount of positivity.

Just concerned that perhaps this Oncologist isn't the best fit and would be curious to hear the thoughts of others on this and the treatments mentioned above.

Thanks, J

User
Posted 10 Aug 2017 at 12:22

Hi, it is uncommon to do a biopsy if there is already evidence that it is prostate cancer and has spread - the Gleason score makes no difference now to the treatment options so why take the risk? Sometimes a biopsy is done later - usually in the rare circumstance that hormone therapy fails very quickly and they need to check the type of prostate cancer (there are at least 27 types) but at the moment that will not apply to your dad.

Abbi and enzo are not approved for your dad's staging. The amazing results you have read about are for men who were hormone refractory (ie their cancer has learned to survive without testosterone) ... again, this does not apply to your dad.

Chemo does not cure prostate cancer so until recently was only given to men in the last stages of their life to reduce pain and symptoms. However, as your onco has pointed out, recent trials have shown that chemo given soon after diagnosis can make the hormone therapy much more effective for much longer. Your dad is still a young man and no-one can tell whether the hormones will give him a year or 15 years (we have had members here at both ends of that scale) so what is there to lose in trying the chemo if it keeps him with you for longer? If he finds the side effects too difficult he can stop although it has to be noted that we have men here who carried on working right through chemo, climbed mountains, ran extreme marathons, etc.

Try to trust the onco; s/he will have done many years of training and is likely to know more than Dr Google

Edited by member 10 Aug 2017 at 12:32  | Reason: Not specified

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

User
Posted 10 Aug 2017 at 12:30

PS your final comment about the lymphs / pelvis being clear and you being surprised that the onco saying it was neither good nor bad. It makes no difference to your dad's diagnosis, treatment plan or prognosis where the mets are (unless they are seen in the brain or liver perhaps).

Did they give dad any advice about the signs and indicators of spinal cord compression? It is very important that you and your family are alert to this as the signs can seem quite minor but the damage can be permanent and devastating.

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

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User
Posted 10 Aug 2017 at 07:20

Hello J and welcome to the site.

I'm not qualified to answer your questions so I'm just bumping you in case somebody else can

Best Wishes

Sandra

****

We can't control the winds - but we can adjust our sails
User
Posted 10 Aug 2017 at 10:14
I'm not sure a biopsy would change much and it carries its own risks too. On the other hand it would allow pathologists to grade it.

Has the oncologist suggested radiotherapy after the chemo? This seems to be the way the Stampede trial ran it with hormone therapy alongside the chemo and the RT.

That would probably give your dad the best outcome. I'm not sure Abiretarone or Enzo are used firstl or when after initial HT fails. There are others on this forum better qualified than me to give you that information.

Finally I would take heart that the oncologist has already started HT and is following that with early chemo. They are treating the disease aggressively without delay which is really good. No more than that would be sensible for now giving you and your dad time to explore and discuss future treatment plans. Best wishes.

Ido4

User
Posted 10 Aug 2017 at 11:33

Hi and welcome
My husband (67)was diagnosed in March this year with PSA over 1000 and extensive bone mets. He's on HT and has now had 3 sessions of Chemo with another 3 to go. He's not found the Chemo too bad so far, He did have a biopsy Gleason 3 + 5. I'm not sure how important that was. His latest PSA was 2.8 so his treatment is obviously working well. He has managed to go to work most days and very few side effects from the Chemo.Do you have any specific questions on this?

User
Posted 10 Aug 2017 at 12:22

Hi, it is uncommon to do a biopsy if there is already evidence that it is prostate cancer and has spread - the Gleason score makes no difference now to the treatment options so why take the risk? Sometimes a biopsy is done later - usually in the rare circumstance that hormone therapy fails very quickly and they need to check the type of prostate cancer (there are at least 27 types) but at the moment that will not apply to your dad.

Abbi and enzo are not approved for your dad's staging. The amazing results you have read about are for men who were hormone refractory (ie their cancer has learned to survive without testosterone) ... again, this does not apply to your dad.

Chemo does not cure prostate cancer so until recently was only given to men in the last stages of their life to reduce pain and symptoms. However, as your onco has pointed out, recent trials have shown that chemo given soon after diagnosis can make the hormone therapy much more effective for much longer. Your dad is still a young man and no-one can tell whether the hormones will give him a year or 15 years (we have had members here at both ends of that scale) so what is there to lose in trying the chemo if it keeps him with you for longer? If he finds the side effects too difficult he can stop although it has to be noted that we have men here who carried on working right through chemo, climbed mountains, ran extreme marathons, etc.

Try to trust the onco; s/he will have done many years of training and is likely to know more than Dr Google

Edited by member 10 Aug 2017 at 12:32  | Reason: Not specified

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

User
Posted 10 Aug 2017 at 12:30

PS your final comment about the lymphs / pelvis being clear and you being surprised that the onco saying it was neither good nor bad. It makes no difference to your dad's diagnosis, treatment plan or prognosis where the mets are (unless they are seen in the brain or liver perhaps).

Did they give dad any advice about the signs and indicators of spinal cord compression? It is very important that you and your family are alert to this as the signs can seem quite minor but the damage can be permanent and devastating.

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

 
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