The beast came back!

[Dino]

Hey fellas,

First diagnosed September,2006, at age 48, psa 4.5, Gleeson 7b ( 4+3), Stage 2, 4 out 12 positive biopsy cores.

Given the option of EBRT or surgery. Told by Urologist and backed up by second opinion from Radiation Oncologist

that ERBT would give me a 79% chance of being cancer free at 10 years, compared to 64% with surgery. 

So I chose the ERBT. ( this decision now to me seems to be the wrong one! )

PSA went down slowly after treatment, finally stabilizing at 0.8 about 2 years later, and given the all clear.

For about 5 years i rarely gave having Pca much thought, my Psa remaining around the 1.0 mark every annual test.

 

Then,in June 2014, after psa went to 3.3 in May, i was told the tumour had grown back in the prostate ( positive DRE by 

Oncologist ). However, a pelvic MRI showed metastatic spread to the right common illiac lymph node, and a bone scan 

showed "suspicious spots" in pelvic bones and spine. ( however a different radiologist called these spots "areas of oestioarthritis,

NOT bone mets" after a follow up scan 6 months later )

 

So the prognosis was that the cancer was incurable, but controllable for an indefinite period of time.

 

It took my psa until September,2015, to climb to 15 ( Dr wanted to wait until it went to 10 before starting ADT )

 

Had my first 4 monthly shot of LUCRIN, October 2nd, 2015. Psa went down to 1.5 after a month, and then down to 0.24 in Feb,2016.

2nd LUCRIN shot was received 11th Feb, 2016.

 

I would be glad to chat to anyone. It would certainly be good to find some one with a similar story or who is going through ADT.

 

Thanks for listening,

 

Cheers Mark 

[flyingphil]

Hi Dino,

Sorry to hear that you are on this path but DO NOT DESPAIR. There are lots of blokes on his forum who will be of great assistance.

I have been on the 'dreaded' Hormone therapy for a year or two and am happy to chat if that would help.

I can be contacted for my mobile and landline numbers by emailing ***************.

Phil

 

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[Kezza2]

Hey  Dino,

You are not alone.  Your story is about exactly the same as mine, but I am six years further down the track than you.  I have been on intermittent Lucrin for 15 years, and am still here to tell the tale, so do not despair.  Like you, I was young when diagnosed (50) and am now 66.  My story is on the forum if you are interested in the details.  I was not given the option of surgery or EBRT, but do not regret having EBRT so don't beat yourself up about your decision.   I have progressed to the metastatic stage with tumors in a couple of lymphs, plus scapula, sternum, rib, and spine, but it took a long time before Lucrin stopped working, and then there is aberaterone, enzalutimide, docetaxel and a bunch of other treatments to keep you going for a long time yet.  Keep up your bisphosphonates, exercise, and read some of the postings on diet and supplements eg vitamin D, etc so you can make an informed decision for yourself.

 

Happy to chat on email any time at **************

 

Cheers 

 

Kezza

 

[Moderator  Email address deleted from post.  Same reason as above.]

[Paul Edwards]

Hi Dino

 

Did your doctor discuss with you the option of having a combination of chemotherapy and ADT?

 

The CHAARTED study results demonstrated that early chemotherapy makes a difference in overall survival (OS).  STAMPEDE results showed that patients receiving ADT plus docetaxel had a statistically significant improvement in progression-free survival, and there was an impressive 22-month improvement in OS in the group with M1-stage disease.

 

Here are some articles about early chemotherapy:

http://gucasym.org/daily-news/evolving-role-chemotherapy-prostate-cancer-timing-may-be-key

http://prostatecancerinfolink.net/2015/05/14/new-stampede-data-supports-earlier-chaarted-trial-results/

 

"Even after CHAARTED, I hear of patients and oncologists who decide to “save [chemotherapy] for last,” when it does very little good. I agree too that, while 6 cycles are not a walk in the park, symptoms are manageable and usually not debilitating.  In my groups, I point out to men reticent to take [chemotherapy with ADT] that a small sacrifice in quality-of-life years now may result in a much longer increase in quality of life later." - Comment on New Prostate Cancer Infolink.

 

Is your treating doctor a medical oncologist specialising in prostate cancer or a urologist (surgeon)?   If he's a urologist, then you should consider transitioning your care to a medical oncologist.    Medical oncologists are just far more savvy regarding drugs, their benefits, and managing their side effects, and they tend to keep up with that world, while the urologists are, naturally, concentrating on developments related closely to surgery.  On the other hand, I wouldn't want my medical oncologist doing surgery for me!