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Father, 76, just diagnosed with Advanced PC. Any wisdom appreciated

User
Posted 05 Jul 2019 at 18:34

Hello.  Just joined the community, as my Father, aged 76 just diagnosed yesterday with High Risk, High Grade Prostate Cancer.  Gleason 9.  PSA at diagnosis, 305.  Multiple tumours found in lymph nodes in Pelvis, but as yet no bone Mets and no mets in organs.  Doctor has given a likely prognosis of 18-24 months survival, but with  likely additional 2 year survival if he has 6 sessions of chemo upfront.  Is on Prostap hormone treatment already.

Is feeling healthy (no co-morbities) but gone into a big depression after diagnosis yesterday (not helped by the Nurse who broke the news showing no empathy or signs of hope)

i am supporting him in every way, but would so much welcome any wisdom or comments from the community, as we start this journey - E.g. Is chemo worth the benefit over the possible side effects? Anyone with similar diagnosis beating the 4 year life expectancy we have been given?

Father diagnosed post scans and biopsy, after presenting with urinary symptoms.  Trangically, Neither my Father or I knew about PSA testing, and the doctors never offered such a test/screen to him, to catch him early.  This is something I am finding hard to come to terms with (feel that I, his GP, and NHS have let him down)

Getting my 1st PSA test on Friday, as know now I am high risk too

Thanks

Alun

User
Posted 05 Jul 2019 at 18:34

Hello.  Just joined the community, as my Father, aged 76 just diagnosed yesterday with High Risk, High Grade Prostate Cancer.  Gleason 9.  PSA at diagnosis, 305.  Multiple tumours found in lymph nodes in Pelvis, but as yet no bone Mets and no mets in organs.  Doctor has given a likely prognosis of 18-24 months survival, but with  likely additional 2 year survival if he has 6 sessions of chemo upfront.  Is on Prostap hormone treatment already.

Is feeling healthy (no co-morbities) but gone into a big depression after diagnosis yesterday (not helped by the Nurse who broke the news showing no empathy or signs of hope)

i am supporting him in every way, but would so much welcome any wisdom or comments from the community, as we start this journey - E.g. Is chemo worth the benefit over the possible side effects? Anyone with similar diagnosis beating the 4 year life expectancy we have been given?

Father diagnosed post scans and biopsy, after presenting with urinary symptoms.  Trangically, Neither my Father or I knew about PSA testing, and the doctors never offered such a test/screen to him, to catch him early.  This is something I am finding hard to come to terms with (feel that I, his GP, and NHS have let him down)

Getting my 1st PSA test on Friday, as know now I am high risk too

Thanks

Alun

User
Posted 05 Jul 2019 at 21:50

I'm not really qualified to give advice Alun but you do raise an interesting point about screening. As I understand it, the PSA test has limitations in diagnosis - it is far more valuable post treatment to measure success or otherwise. In my case I asked for a PSA test because my father died of Pca at 57 and my older brother was diagnosed back in late 2012. My PSA was raised (just over 7) and even then the advice was there may be nothing wrong (I had no symptoms whatsoever but I did have the family history) and it might be BHP (a benign enlargement of the prostate). To be fair to the NHS they did leap into action with biopsies and scans almost immediately which lead to a diagnosis of Pca.

I think I'm right in thinking that unless there are symptoms or family history, there is no Pca screening system as such in the UK. I tend to think we should have one but there are arguments against.

(Just to add Alun - don't blame yourself for this. How were you to know? Concentrate on moving forward from this point)

Edited by member 05 Jul 2019 at 21:54  | Reason: Not specified

User
Posted 06 Jul 2019 at 00:11
Thank you Pete. All the very best for your and your brothers treatment. I will try and move forwards, rather than looking backwards to support my Father. At least I know about PSA and family risk now, to get myself checked out
User
Posted 06 Jul 2019 at 06:30
Very sorry to hear of your dads cancer. I’m currently looking into articles on Chemo given early with hormone injections. The idea is that it makes the hormone therapy last longer before the cancer gets the better of it. I’ll look again for the last article I read. It clearly stated that whilst Chemo is shown to batter cancer cells and give them a massive shock , there is no hard evidence yet that it actually extends overall life. For example for some men it works great ( or was it just the HT ? ). And for others they have it and their psa just keeps rising anyway. In some cases it can cause other life threatening conditions. But I’m certainly not the most well-read on this forum. I may have to make this decision soon too. Good luck

If life gives you lemons , then make lemonade

User
Posted 06 Jul 2019 at 08:57

Sorry to hear of your dad’s diagnosis Alun. The Stampede trial showed a survival advantage with early docetaxel chemotherapy for metastatic prostate cancer.

The thinking is that those survival benefits would also extend to locally advanced prostate cancer patients. It appears that benefits are better in high risk, high grade patients.

If your dad can tolerate the upfront chemotherapy that would be the right thing to do.

https://prostatecanceruk.org/about-us/projects-and-policies/access-to-drugs/earlier-docetaxel

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6300376/pdf/ott-11-9061.pdf

Best wishes,

 

Ido4

User
Posted 06 Jul 2019 at 09:07
Thanks Chris. I do believe that the STAMPEDE trial showed conclusively that chemo (for 6 sessions) alongside HT can improve life expectancy by around 2 years. A very good www. On this is Stampedetrial.org

Of course it is an individual's decision as to whether to have chemo (weighing up likely benefits over likely side effects) and the Oncologist will also help determine whether someone is 'medically fit/eligible' for Chemo

This will be a big decision for my Father, as he is generally fit, but is also concerned about the thought of having Chemo

All the best to you and your treatment decisions

Having my own PSA test next week, as I now know I am also high risk due to my Fathers diagnosis

User
Posted 06 Jul 2019 at 10:15

hi alun

all the very best. see my profile.

how old are you may I ask ? any siblings ?

you asked about .  wisdom.

firstly it will be very raw and possibly the worst period over the next few weeks.  it will actually improve.  emotionally whole family impact is underestimated.  NHS individuals may seem cold and detached..  everyone has a variety of experiences.

so.  advice  .  if you haven't already.  great resource on this site.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

also local support group.  possibly Basingstoke  near you ??

 Can be worth a contact.

Age is irrelevant 're. your dad. Its  his overall fitness. health  and attitude. reaction to this news .

The key is to keep questioning,  building knowledge and weighing up  QofL .   Chris posts are well worth reading and many others.    If you and dad already have a loving and open relationship you are already shifting any outcomes in your favour. 

At the moment this is just 1 point on your dad's 'timeline ' ..  he might have had pca for 15+yrs.    The term 'aggressive ' is relative.

Hope this helps.

all the very best 

Gordon 

Edited by member 06 Jul 2019 at 10:29  | Reason: Not specified

User
Posted 06 Jul 2019 at 12:29
Thank you Gordon,

I am 48, and have a twin brother.. Booked in my 1st ever PSA test for next week, and informed my twin too

Only silver lining is that my fathers Advanced pca not yet found in bones or organs. However, mets have been found in lymph nodes in Pelvis. Not sure which is better/worse

All the best

Alun

User
Posted 06 Jul 2019 at 20:22
Alun

I was diagnosed last August and am still on HT, had 6 chemo sessions between October and January then 20 RT sessions in March and April.

The chemo pretty well knackered me for 4 months, steroids made me pile on a couple of stone and in week 2 after the chemo I was generally in bed feeling weak and awful.

I couldn't have done a 7th session. QOL was none existent.

RT in comparison was a breeze.

So 6 months after completing chemo I'm feeling pretty good, walking a few miles a day and enjoying a few holidays.

Others will tell you chemo is a piece of cake, we're all different.

Hope this helps.

John

User
Posted 06 Jul 2019 at 23:15

hi alun.

pure coincidence I posted on 'kevink'   the other week and noticed he is  a twin.

research. .. 

https://www.icr.ac.uk/

both myself and brother registered few years ago.

https://www.icr.ac.uk › ukgpcs

UK Genetic Prostate Cancer Study - The Institute of Cancer Research 

obviously not specific to twins and see criteria .  ie diagnosed family members.

Although they asked for as much family tree and other causes of death in near family.

I've not had any DNA analysis performed.

 

Regards Gordon 

 

 

 

 

 

 

Edited by member 06 Jul 2019 at 23:36  | Reason: Not specified

User
Posted 07 Jul 2019 at 18:54

Hey,

 

My dad has advanced metastic prostate cancer Gleason score 7 with bone mets(in spine, clavicle, ribs) . 

Hes currently on round 4 of chemo and apart from tiredness, around day 2-5 post chemo he is sailing through it . No sickness, no hair lose. He is putting on weight around 9kgs in 3 months , and apart for the fact he ll need a new kilt for my wedding in September this hasn’t been a problem. 

 

This is only his experience but like yourself we thought the worse and imagined it being a horrible time. But apart from tiredness and grumpyness(we blame the hormone treatment) it’s been actually okay! 

Keep us updated on how he gets on. 

 

A

 

 

User
Posted 07 Jul 2019 at 20:16

Hi Alun

I was diagnosed August 2018 mets to lymph node, rib and jaw. PSA 5806. Straight on to HT (Degarelix and now Prostap). Early Chemo October through to January. Was worried about side effects but was lucky. Worst thing was finger and toe nails deteriorated (Peripheral Neuropathy), they’re slowly improving now. Some hair thinning otherwise ok. Still tired mainly from HT. Generally not a terrible experience for me. Lucky I guess.

PSA in March after chemo was 6.6 (rose to 63 in May) I was guided by my Oncologist’s advice and don’t regret it. Chemo will trash your white blood cells and during days 7-10 after chemo need to be very careful not to pick up any infection. The Chemo nurses are also great and will ensure the experience goes ok. 

Good luck       David

 

 

User
Posted 08 Jul 2019 at 08:08
My father in law refused any treatment that would affect his sex life but did go through with the chemo, aged 79. Apart from his hair falling out, he found the biggest problem was that his wife wouldn't let him go to the pub in days 5-7 ... otherwise he breezed through it with no ill effects. What we didn't know until 3 or 4 years later was that the chemo can cause heart damage. He survived 4 years post diagnosis.

However, the estimates for your dad seem a little on the low side. We have men that are still here 10, 15 years or more after similar diagnosis.

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

User
Posted 16 Jul 2019 at 22:23

Hi Alun

just to let you know that my hubby was diagnosed more than eight years ago, Gleason 10 and mets in many bones and Lymph nodes. He’s still with us (though things are difficult now). We were told around two years as a prognosis but what a load of rubbish that was. John had chemo last year and was fine really, just one episode of flu that led to him being hospitalised. John was 61 when diagnosed and swore he’d make 70, and he has.

good luck for your dad,

love Devonmaid xxx

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User
Posted 05 Jul 2019 at 21:50

I'm not really qualified to give advice Alun but you do raise an interesting point about screening. As I understand it, the PSA test has limitations in diagnosis - it is far more valuable post treatment to measure success or otherwise. In my case I asked for a PSA test because my father died of Pca at 57 and my older brother was diagnosed back in late 2012. My PSA was raised (just over 7) and even then the advice was there may be nothing wrong (I had no symptoms whatsoever but I did have the family history) and it might be BHP (a benign enlargement of the prostate). To be fair to the NHS they did leap into action with biopsies and scans almost immediately which lead to a diagnosis of Pca.

I think I'm right in thinking that unless there are symptoms or family history, there is no Pca screening system as such in the UK. I tend to think we should have one but there are arguments against.

(Just to add Alun - don't blame yourself for this. How were you to know? Concentrate on moving forward from this point)

Edited by member 05 Jul 2019 at 21:54  | Reason: Not specified

User
Posted 06 Jul 2019 at 00:11
Thank you Pete. All the very best for your and your brothers treatment. I will try and move forwards, rather than looking backwards to support my Father. At least I know about PSA and family risk now, to get myself checked out
User
Posted 06 Jul 2019 at 06:30
Very sorry to hear of your dads cancer. I’m currently looking into articles on Chemo given early with hormone injections. The idea is that it makes the hormone therapy last longer before the cancer gets the better of it. I’ll look again for the last article I read. It clearly stated that whilst Chemo is shown to batter cancer cells and give them a massive shock , there is no hard evidence yet that it actually extends overall life. For example for some men it works great ( or was it just the HT ? ). And for others they have it and their psa just keeps rising anyway. In some cases it can cause other life threatening conditions. But I’m certainly not the most well-read on this forum. I may have to make this decision soon too. Good luck

If life gives you lemons , then make lemonade

User
Posted 06 Jul 2019 at 08:57

Sorry to hear of your dad’s diagnosis Alun. The Stampede trial showed a survival advantage with early docetaxel chemotherapy for metastatic prostate cancer.

The thinking is that those survival benefits would also extend to locally advanced prostate cancer patients. It appears that benefits are better in high risk, high grade patients.

If your dad can tolerate the upfront chemotherapy that would be the right thing to do.

https://prostatecanceruk.org/about-us/projects-and-policies/access-to-drugs/earlier-docetaxel

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6300376/pdf/ott-11-9061.pdf

Best wishes,

 

Ido4

User
Posted 06 Jul 2019 at 09:07
Thanks Chris. I do believe that the STAMPEDE trial showed conclusively that chemo (for 6 sessions) alongside HT can improve life expectancy by around 2 years. A very good www. On this is Stampedetrial.org

Of course it is an individual's decision as to whether to have chemo (weighing up likely benefits over likely side effects) and the Oncologist will also help determine whether someone is 'medically fit/eligible' for Chemo

This will be a big decision for my Father, as he is generally fit, but is also concerned about the thought of having Chemo

All the best to you and your treatment decisions

Having my own PSA test next week, as I now know I am also high risk due to my Fathers diagnosis

User
Posted 06 Jul 2019 at 09:13
Thanks Ido4

Your understanding is exactly the same as mine - on the back of the conclusive STAMPEDE trial results

Seeing the Oncologist with my dad in 2 weeks time, whom I'm sure will recommend upfront chemo (as dad diagnosed with high grade high risk Advanced PC, and is otherwise 'fit'). He has PC in lymph nodes in pelvis but not yet PC in organs or Bone mets

My father is scared of chemo, so we are interested to know more about people's experiences of likely side effects. My understanding is that you can always start chemo, but if it becomes too intolerable then you could always ask to stop before further sessions

All the best to you

User
Posted 06 Jul 2019 at 09:55

Hi Alun,

There are many on this forum who have been through chemotherapy and I’m sure they will respond with their experiences and tips on how best to cope with it.

There will be fewer who have had it upfront.

Everyone is different so your Dad’s experience should he go with it will be unique to him in many respects. I understand the dose can be reduced a little or number of infusions changed (up or down) depending on the individual. There is at least one member here who has had a lot of docetaxel infusions.

One member did a video blog of his treatment. I will try and find the link for you.

 

 

Ido4

User
Posted 06 Jul 2019 at 10:15

hi alun

all the very best. see my profile.

how old are you may I ask ? any siblings ?

you asked about .  wisdom.

firstly it will be very raw and possibly the worst period over the next few weeks.  it will actually improve.  emotionally whole family impact is underestimated.  NHS individuals may seem cold and detached..  everyone has a variety of experiences.

so.  advice  .  if you haven't already.  great resource on this site.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

also local support group.  possibly Basingstoke  near you ??

 Can be worth a contact.

Age is irrelevant 're. your dad. Its  his overall fitness. health  and attitude. reaction to this news .

The key is to keep questioning,  building knowledge and weighing up  QofL .   Chris posts are well worth reading and many others.    If you and dad already have a loving and open relationship you are already shifting any outcomes in your favour. 

At the moment this is just 1 point on your dad's 'timeline ' ..  he might have had pca for 15+yrs.    The term 'aggressive ' is relative.

Hope this helps.

all the very best 

Gordon 

Edited by member 06 Jul 2019 at 10:29  | Reason: Not specified

User
Posted 06 Jul 2019 at 12:29
Thank you Gordon,

I am 48, and have a twin brother.. Booked in my 1st ever PSA test for next week, and informed my twin too

Only silver lining is that my fathers Advanced pca not yet found in bones or organs. However, mets have been found in lymph nodes in Pelvis. Not sure which is better/worse

All the best

Alun

User
Posted 06 Jul 2019 at 20:22
Alun

I was diagnosed last August and am still on HT, had 6 chemo sessions between October and January then 20 RT sessions in March and April.

The chemo pretty well knackered me for 4 months, steroids made me pile on a couple of stone and in week 2 after the chemo I was generally in bed feeling weak and awful.

I couldn't have done a 7th session. QOL was none existent.

RT in comparison was a breeze.

So 6 months after completing chemo I'm feeling pretty good, walking a few miles a day and enjoying a few holidays.

Others will tell you chemo is a piece of cake, we're all different.

Hope this helps.

John

User
Posted 06 Jul 2019 at 23:15

hi alun.

pure coincidence I posted on 'kevink'   the other week and noticed he is  a twin.

research. .. 

https://www.icr.ac.uk/

both myself and brother registered few years ago.

https://www.icr.ac.uk › ukgpcs

UK Genetic Prostate Cancer Study - The Institute of Cancer Research 

obviously not specific to twins and see criteria .  ie diagnosed family members.

Although they asked for as much family tree and other causes of death in near family.

I've not had any DNA analysis performed.

 

Regards Gordon 

 

 

 

 

 

 

Edited by member 06 Jul 2019 at 23:36  | Reason: Not specified

User
Posted 07 Jul 2019 at 18:54

Hey,

 

My dad has advanced metastic prostate cancer Gleason score 7 with bone mets(in spine, clavicle, ribs) . 

Hes currently on round 4 of chemo and apart from tiredness, around day 2-5 post chemo he is sailing through it . No sickness, no hair lose. He is putting on weight around 9kgs in 3 months , and apart for the fact he ll need a new kilt for my wedding in September this hasn’t been a problem. 

 

This is only his experience but like yourself we thought the worse and imagined it being a horrible time. But apart from tiredness and grumpyness(we blame the hormone treatment) it’s been actually okay! 

Keep us updated on how he gets on. 

 

A

 

 

User
Posted 07 Jul 2019 at 19:58

Thank you A!  

This is encouraging to know.  I keep explaining to my Father (who is scared even of the word, chemo) that all mens experiences will be different with chemo, and also the conclusive findings from STAMPEDE that speak of the benefits of upfront chemo

Very pleased to hear your Father is tolerating it well

Alun

User
Posted 07 Jul 2019 at 20:16

Hi Alun

I was diagnosed August 2018 mets to lymph node, rib and jaw. PSA 5806. Straight on to HT (Degarelix and now Prostap). Early Chemo October through to January. Was worried about side effects but was lucky. Worst thing was finger and toe nails deteriorated (Peripheral Neuropathy), they’re slowly improving now. Some hair thinning otherwise ok. Still tired mainly from HT. Generally not a terrible experience for me. Lucky I guess.

PSA in March after chemo was 6.6 (rose to 63 in May) I was guided by my Oncologist’s advice and don’t regret it. Chemo will trash your white blood cells and during days 7-10 after chemo need to be very careful not to pick up any infection. The Chemo nurses are also great and will ensure the experience goes ok. 

Good luck       David

 

 

User
Posted 08 Jul 2019 at 08:08
My father in law refused any treatment that would affect his sex life but did go through with the chemo, aged 79. Apart from his hair falling out, he found the biggest problem was that his wife wouldn't let him go to the pub in days 5-7 ... otherwise he breezed through it with no ill effects. What we didn't know until 3 or 4 years later was that the chemo can cause heart damage. He survived 4 years post diagnosis.

However, the estimates for your dad seem a little on the low side. We have men that are still here 10, 15 years or more after similar diagnosis.

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

User
Posted 08 Jul 2019 at 23:14

Thank you David, 

Definitely want my dad to have chemo, and thanks for sharing your experience with it

All the very best to you, and fantastic to hear your PSA going down so radically after treatment

Alun

 

 

User
Posted 08 Jul 2019 at 23:19

Thank you Lyn for sharing your experience.  I too am confident that he can well beat the pessimistic life expectancy initially mentioned by the Urology team.  High Gleason 9 and high PSA 305 and in Pelvic Lymph nodes, but not yet in bones or organs

All the best to the men in your life.  You clearly care about them all, and it means so much to have support

Alun

User
Posted 16 Jul 2019 at 18:21

Hi Alun, If you want to check me out,  my thread is "Diet and Spirituality" where you can see how I (and others) have dealt with what can be a devastating diagnosis. I am not a religious nutter or a time waster - my day job before retirement was lecturing in Philosophy.

Enough about me. Please would you let me know your father's name by private message on PCa UK, and I and my wife will pray for him "at a distance". This can take different forms, but more of that when you get back to me. We have been around some remarkable instances of healing at a distance. Some of them instantaneous...

Thanks for reading this far. We are already with you in the vital caring you are giving to your father...not least by your recent post.

Blessings - Barcud (David and Jill)

User
Posted 16 Jul 2019 at 21:16
A171, no issue with you looking at Barcud's ideas about miracle cures but do not send your details or any private message to this person - I have reported the post to the moderators.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2019 at 22:23

Hi Alun

just to let you know that my hubby was diagnosed more than eight years ago, Gleason 10 and mets in many bones and Lymph nodes. He’s still with us (though things are difficult now). We were told around two years as a prognosis but what a load of rubbish that was. John had chemo last year and was fine really, just one episode of flu that led to him being hospitalised. John was 61 when diagnosed and swore he’d make 70, and he has.

good luck for your dad,

love Devonmaid xxx

User
Posted 18 Jul 2019 at 16:50

Hi Alun,

I was diagnosed in Aug 2016 with advanced PCa and a PSA of 529 at the age of 75.  I had damage to the lymph nodes which has led to Lymphoedema.  I had early chemo which was not too bad- the worst part was constipation at the start!  You do need to check your temperature several times a day to guard against sepsis.  I felt weak but managed short level walks on most days.  Since the chemo, I have carried on cycling and sailing and have just done an 800-mile charity bike ride.  I would certainly recommend early chemo.  I am also on Arm K of the Stampede trial (taking Metformin twice a day).

I wish your Dad all the best,

Gromit.

 
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