Luckiest patient

[Dont08759]

First post. I know I am a statistical abnormality. As a 31 1/2 year rectal cancer (stage C), twice operated lung metastasis, cryo prostatewith a Gleason 7,8 &9 score survivor, I should not be here. I was fortunate to be a tech at a medical school and received outstanding care & follow up...

[LearnAll]

31 1/2 years ...Am I reading correctly? Congratulations ! You are giving lot of hope to us..poor souls ...who are new to this game.Would you give guidance to us what worked and what did not work for you.?

[Dont08759 in reply to LearnAll]

Lots of things, supportive spouse, great docs who monitored my condition, advancements in medicine, etc. I was relative healthy at the time playing softball, soccer and riding my bike 5 miles each way to work. I know Dr. Bernie Siegal’s book “Love, Miracles and Medicine” gave me a lot of hope.

[Shooter1]

You and your crew are doing something right...keep it up!!

[Tall_Allen]

Have you had a germline genomic test, like Color Genome Dx?

prostatecancer.news/2018/02...

If you have the BRCA mutation, a PARP inhibitor and/or platin chemo may be useful.

[Dont08759 in reply to Tall_Allen]

Not sure, I had a genetic test a few years back that did not show a correlation. I thought my rectal cancer might be from the radioactive microsheres I was injecting for research. Or, White Castle hamburgers, just not sure...

[addicted2cycling in reply to Dont08759]

WHEN were you diagnosed with PCa and had Cryo and by whom? If you don't mind sharing. TIA.

[Dont08759 in reply to addicted2cycling]

So February 2017 I could not pee. I visited dr. Fariss a urologist in Key West. A foley was inserted, a month later a green light laser performed. Prostate biopsies taken and 3 days later 4/5 Gleason 8s on the right side. Dr. Herbert Lapor performed cryo on the right side. My PSA dropped. Two years later a follow up biopsy found 11/18 Gleason 7,8 & 9 on both sides. Three NYU urologists refused to perform a prostatectomy due to the radiation I had 30 years previously for rectal cancer. Oncology Radiologists at three facilities told me I was not a candidate for therapy. So far no metastatic disease has been detected, I’m on Lupron and my PSA is very low.

[addicted2cycling in reply to Dont08759]

Thanks for the reply/info. My right half of prostate Gleason 10 was Cryo'd by Dr. Onik in 2015 then later finishing the left side cryo of lesser GL with the added immunotherapy injection. Had my Testosterone injection yesterday to help recovery from exercising, the 100+ mile bicycle rides that are easy here in SW FL and to prevent effects resulting from the bilateral orchiectomy I chose to have instead of ADT after finding out about the PCa.

Glad you are the "Luckiest patient"

[LearnAll]

I recently did germline testing thru COLOR.COM. My results came back in 3 weeks and showed "No mutation were identified" Sample was Saliva. which was sent in a test tube . I like Color.Com. They charged approx 150 dollars and were efficient and worth the price.

[Realistic]

You really are lucky and you deserve to be at your age, hopefully you'll live a long life. And be able to help others with your medical experience . Really fantastic keep it up xxSheilaF

[Alexcohen]

Hello, I have very similar history to you. Rectal cancer at age 24 and prostate cancer diagnosed at age 52. Did you get tested to see if you have a Lynch Syndrome mutation? (I have MSH-2) Like you my previous radiation did not allow for a prostatectomy (Thank God) or External Beam radiation. My doctor agreed to let me do immunotherapy (keytruda followed by ippi nivo) for a total of 15 months as an initial treatment. For last 6 months of this, i was on ADT. Also had brachytherapy. I have been undetectable for about 8 months and currently under no treatment. There was evidence of cancer in my pelvic lymph nodes - now in remission.

[Dont08759 in reply to Alexcohen]

Medical miracles, I am happy I am not alone. Other than the 2 times I had lung metastasis 24 & 25 years ago, we are the same! Thank you for sharing! As you so well know...Everyday day I’d a gift!

[j-o-h-n]

Greetings Dont, Do you have any objections in telling us your age?

I thought I was the luckiest patient since my ex-wife left me years ago....Maybe we should form a club.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/09/2021 9:51 PM EST

[Dont08759 in reply to j-o-h-n]

Yes, we should start a club. Born in 1948, I was 41 when diagnosed in 1989. My youngest son would turn 4 that month. Both of my parents lost a parent while under 5 years old so I was very concerned. On the up side, 2 days after my lower anterior resection I started a partnership eventually importing model trains from China. I still worked at the medical school as a surgical research/teaching technician until I finally retired in 2013.

[Dont08759]

Tell me a little about yourself...

[Hotrod65]

Last Month i had my clinic visit with Scans and my Final treatment #50 of immune checkpoint inhibitors for stage 4 Metastatic small cell Neuroendocrine differentiation PC, i am thrilled beyond words to tell you all i am still in Complete Durable Clinical Remission ,No Evidence of Disease going on 5 yrs since treatment began, Decision of Team was to stop treatment completely and monitor with clinical appointments every 6 months and scans every 2 yrs, or sooner if any blood work warrants it?...i am also a Medical Miracle to have made it this far from a 3 month terminal diagnosis 6 yrs ago..I'm about to start a Research project with Foundation Medicine and the Cancer Research Institute for the Advancement of immunotherapy to determine why I'm classified as an exceptional responder for such a lethal form of this disease?, I hope we can uncover the reasons and provide Hope to the countless other men afflicted with this awful diagnosis.. God Bless and please stay safe...John.

[Chugach in reply to Hotrod65]

Awesome- I’m a year undetectable pSA now - right behind you!