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User
Posted 11 Jul 2018 at 18:08

Hi - I have just joined this group today.  5 Weeks ago my husband was diagnosed with Advanced Prostate Cancer - PSA reading of 9250.  It has spread to the bone and 2 weeks ago he had a bone scan to see the extent, the week before that he had full body MRI.  As of this evening, we are still waiting on results.  We are in Glasgow?  Is these long waiting times "normal"?  Ty in advance.

User
Posted 13 Jul 2018 at 05:36

Hello Jay Bee,

I saw your Post with reference to the very high PSA, and thought I would share my story of being diagnosed at age 65 with a PSA of 5,006 in November 2013 with very many bone mets and also lymph node mets.  I live in California, USA, a couple of hours away from San Francisco. 

My initial CT Scans, Bone Scan, and a biopsy of a lymph node all happened within a month.  I was in great pain in my lower back and abdomen, in the area of some "mets.  I went straight to what we call Androgen Deprivation Therapy (ADT).  Back then, I had initial bicalutamide (Casodex) followed by 3 month depot injections of Lupron (may have other names elsewhere) "for life" as systematic treatment.  I also had a bone protective agent called Zometa (zoledronic acid), but could have also had an alternative drug Xgeva (denosumab).   These may or may not be what is used in your part of the world.   Anyway, my pain went away within a month, and my PSA dropped to as low as 1.0 within a few months, and stayed low for nearly 2 years.

If I were treated today, I would have probably had ADT + early Chemo with docetaxel, or ADT + Early Zytiga (abiraterone acetate) & Prednisone, which have been subsequently found to provide longer Overall Survivals than ADT alone for such cases.

Eventually, my PSA started rising again, and I added Xtandi (enzalutamide) when my PSA was back up to 95.0.   It again dropped to 1.2, and is currently at 1.9 around 1.5 years on added Xtandi.

All in all, I consider myself fortunate to have had some "lucky biology" and treatments that worked pretty well.

I have survived now for a little over 4.5 years with advanced Stage IV metastatic prostate cancer.

My advice to you is to settle in for the long haul.  Keep participating in face-to-face or on-line support groups.  Seek the best doctors you can who specialize in advanced prostate cancer.  Learn about the CHAARTED, STAMPEDE, and other related Clinical Trials, and the specialists who participated in them.  Let go of any "shoulda, woulda, coulda" ruminations about the Past, minimize any fretful anxieties about an unknowable Future that nobody can predict with certainty, and allow yourself to Live Well in the Present Moment.   He may not ever be completely Cured of his cancer, but you both can be Healed in many ways in the days, weeks, months, and years ahead.

Good luck and good life to you,

Charles

 

 

User
Posted 13 Jul 2018 at 07:17

Dear curious Charles ,what a great post .its great to hear uplifting stories/ perspectives.
Long may your treatment path work .And good luck Jay Bee
Best wishes
Debby

Edited by member 13 Jul 2018 at 07:19  | Reason: Not specified

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User
Posted 11 Jul 2018 at 20:13

Hi,

I'm so sorry to hear of your husband's diagnosis. I don't have a definitive answer other than to say my dad had to wait for 2 weeks for the results of his scans, which were given to him by the Urologist. He was then referred to the Oncologist and it took a further 4 weeks for that appointment. Once under the Oncologist, things have started to move more quickly. He has another appointment with the Urologist this next Monday and a further one on Tuesday to discuss a clinical trial. I take it your husband has been started on hormone therapy already? xx

User
Posted 11 Jul 2018 at 22:14
Thank you for your reply. Yes, he was started on hormone therapy the day he was diagnosed. He had blood works done the previous week for pain and weight loss and on the basis of the results of the blood test, the GP got his PSA checked and it came back at 9250. I can see from other posts and from what the GP has said that this is extremely high - or as the Urologist said "dramatic". His weight has gone from 12 stone 3 in May to 8 Stone 13 this morning.....
User
Posted 11 Jul 2018 at 22:28

Yes, it is a very high PSA. The good news is that the hormone therapy will put a hold/block on the cancer for the time being, within which time your husband's cancer will be staged, depending on the results of the scans and a treatment plan will be put in place. When my dad was initially told he had Pca (before any scans were undertaken), he was introduced to a macmillan nurse straight after on the very same day. She told him she had access to all his records and could be contacted anytime. Did this happen in your husband's case? If so, please do not hesitate to contact his nurse who may be able to update you with the status of his next appointment for results, etc. I'd certainly be chasing things up now. I know it's all very new and extremely stressful but clinical advances are happening all the time. I'm sure your support will make all the difference. Take care xx

User
Posted 11 Jul 2018 at 22:34
Excellent advice and I thank you for it. How very kind. I am glad I found this forum as it will help greatly with information and advice. xx
User
Posted 11 Jul 2018 at 23:01

You're very welcome. I'm sure someone will respond to your post shortly with far more knowledge than me as I'm fairly new to the journey too. The forum has helped me greatly and there are some fabulous contributors who are walking the walk and are able to provide excellent support and guidance. My dad isn't one for going online but I have gained so much info off this site and it has meant I am able to support him more than I would be able to otherwise. It also means we have been better prepared/equipped to ask questions when meeting the Oncologist, etc. Keep me posted xx

User
Posted 13 Jul 2018 at 05:36

Hello Jay Bee,

I saw your Post with reference to the very high PSA, and thought I would share my story of being diagnosed at age 65 with a PSA of 5,006 in November 2013 with very many bone mets and also lymph node mets.  I live in California, USA, a couple of hours away from San Francisco. 

My initial CT Scans, Bone Scan, and a biopsy of a lymph node all happened within a month.  I was in great pain in my lower back and abdomen, in the area of some "mets.  I went straight to what we call Androgen Deprivation Therapy (ADT).  Back then, I had initial bicalutamide (Casodex) followed by 3 month depot injections of Lupron (may have other names elsewhere) "for life" as systematic treatment.  I also had a bone protective agent called Zometa (zoledronic acid), but could have also had an alternative drug Xgeva (denosumab).   These may or may not be what is used in your part of the world.   Anyway, my pain went away within a month, and my PSA dropped to as low as 1.0 within a few months, and stayed low for nearly 2 years.

If I were treated today, I would have probably had ADT + early Chemo with docetaxel, or ADT + Early Zytiga (abiraterone acetate) & Prednisone, which have been subsequently found to provide longer Overall Survivals than ADT alone for such cases.

Eventually, my PSA started rising again, and I added Xtandi (enzalutamide) when my PSA was back up to 95.0.   It again dropped to 1.2, and is currently at 1.9 around 1.5 years on added Xtandi.

All in all, I consider myself fortunate to have had some "lucky biology" and treatments that worked pretty well.

I have survived now for a little over 4.5 years with advanced Stage IV metastatic prostate cancer.

My advice to you is to settle in for the long haul.  Keep participating in face-to-face or on-line support groups.  Seek the best doctors you can who specialize in advanced prostate cancer.  Learn about the CHAARTED, STAMPEDE, and other related Clinical Trials, and the specialists who participated in them.  Let go of any "shoulda, woulda, coulda" ruminations about the Past, minimize any fretful anxieties about an unknowable Future that nobody can predict with certainty, and allow yourself to Live Well in the Present Moment.   He may not ever be completely Cured of his cancer, but you both can be Healed in many ways in the days, weeks, months, and years ahead.

Good luck and good life to you,

Charles

 

 

User
Posted 13 Jul 2018 at 07:17

Dear curious Charles ,what a great post .its great to hear uplifting stories/ perspectives.
Long may your treatment path work .And good luck Jay Bee
Best wishes
Debby

Edited by member 13 Jul 2018 at 07:19  | Reason: Not specified

User
Posted 13 Jul 2018 at 08:38
Dear Charles, What an uplifting and inspiring message. Thank you so, so much. My husband is 64 and had the same symptoms as yourself, severe lower back and abdominal pain plus weight loss and fatigue. He also has severe COPD and the fatigue and general feeling of unwell were put down to the COPD getting worse until he developed the pain in his back, abdomen and he lost his appetite. A doctors visit, blood work, call back for further blood work including the PSA test and then the cancer diagnosis.

He is on daily hormone therapy with injections into his stomach every 8 weeks. We are awaiting the result of the MRI and Bone Scan.

Your advice is greatly appreciated and I am so glad I joined this forum. It will be an invaluable source of support and information.

Thank you so much again for taking the time to respond with such a positive post and I send you my very best wishes for your journey x

 
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