Greetings

[notjohn]

Hello all!

I've been benefiting from so many of the things you all have shared in the past few months. I haven't felt up to posting myself as life has been a bit overwhelming. But I'm hoping to contribute a bit of my story going forward in the hopes that someone might benefit from my experience as I have benefited yours.

So the purpose of this post is just to say 'hello'. However I'll try to summarize a lot of the diagnostic details for those who want to compare.

Age: 49, single father with two kids (11 and 9)

PSA at diagnosis: 114. I've asked for frequent PSA tests and my results before starting treatment have varied 114 +/- 28 (low 86, high 142). Within the first month of treatment my PSA dropped to from 116 to 3.4. A couple of weeks laster it was 2.6.

Current assessment: (cT3 cN1 cM1)

Biopsy results (12 cores):

1. right base: GS 9(4+5). Tumour/span 100% & 90%

2. right mid: GS 8(4+4). Tumour/spans 60%, 40%

3. right apex: GS 8(4+4). Tumour/spans 80% & 50%

4. left base: GS 8(4+4). (only one core had tumour) span 1%

5. left mid: GS 8(4+4). (one one core had tumour) 35%

6. left apex: GS 7(3+4). (one core had tumor) 50%

Several DREs before hand had noticed moderate firmness on right side

Scans

- MRI estimated prostate at 51ml with a large prostatic carcinoma

- probable extra capsular spread

- probable lymph node metastasis around the prostate.

- no signs of spread to seminal vesicle, neuromuscular bundles or adjacent organs seem

Current Treatment plan

Started Firmagon (I just took my 3rd monthly injection). In the first six weeks of Firmagon my PSA dropped from 116 -> 2.6, which my surgical oncologist characterized as "average response", but a good sign.

After the 6th treatment, I will have another physical exam and MRI/CT. Possibly a PET PSMA scan, for which I will have to go to the USA.

Surgical oncologist has said no option is off the table, but if the tumour shrinks he is hoping to perform RP including the lymph nodes that were affected.

There is a strong suspicion that, although no distant spread was detected during imaging, there is likely microscopic mets. With little concrete data, he estimates at 10-15% chance that RP can get it all and be curative. He indicated (using historical data) that the current nomograms indicate a 50% change of 5 year survival.

[Tall_Allen]

(1) The best PSMA PET scan so far is called DCFPyL. Jewish General Hospital in Montreal will be testing it in high risk patients beginning next month.

clinicaltrials.gov/ct2/show...

You can also get it at NIH in Washington DC. I hear they take out-of-country patients and it is free:

clinicaltrials.gov/ct2/show...

(2) Assuming that no distant metastases are found with the PET scan, the best results found so far for high risk men like yourself is a combination of external beam radiation to the whole pelvic area combined with a brachytherapy boost to the prostate itself.

pcnrv.blogspot.com/2017/02/...

You can get this therapy at Sunnybrook Hospital. Gerard Morton offers it using a type of brachytherapy called "high dose rate brachytherapy." Unlike seeds, nothing is left inside to irritate the bladder and rectum. Here are his contact details:

sunnybrook.ca/team/member.a...

[YostConner]

Ignore the survival data. First, it’s just a statistic (and you’re not), and second, treatments have improved. You do likely have a fight on your hands, but you can handle it. I was first diagnosed over 11 years ago. I’ve known I have metastatic disease for over 8 years. Find a MO you can trust, then fight the damned beast! Let us know how you’re doing.

[notjohn in reply to YostConner]

Thanks YC.

I'm very optimistic that with advances in treatment, a great treatment team and the incredible support of my wonderful partner that I'll be here for many years to come! Besides those numbers are for a general population using treatments that were available years ago. I think our situation improves with the passing of every year.

Of course I want to be well-informed and actively involved at each stage. This community is invaluable for putting up a good fight.

[j-o-h-n]

5 years? i'll predict 5 X 5. You'll be dancing at your kids weddings.

Good Luck and Good Health.

j-o-h-n Saturday 05/05/2018 1:48 AM EDT

Viva Mexico!