One of the lucky ones

[shealy]

I guess I am just lucky. Never was before this but I take it. Diagnosed with Gleason 8 with terciary 5 present. Supposedly successful RALP and margins and lymph node negative. about 7 weeks post surgery I had a 9.6 PSA and after scans there were no findings. Put on Lupron every 3 months. PSA dropped to <.01 undetectable after about a year. Now going on 2 1/2 years with no progression. Having been on Lupron for so long I have other side effect issues as everyone knows and also osteopenia\osteoporosis and have know been taken off Lupron for a holiday. That being said, I still feel lucky because the original prognosis from the urologist was pretty bad. I had been pretty down for a while but now realize that people can survive this for a long time. Yes it is a monkey on my back and sometimes feel hopeless but hen again I know people who were diagnosed with other cancers after mine and are no longer with us. I guess sometimes one of the worst side effects is when people were all so concerned about the fact that I have a stage 4 cancer and then feeling guilty to still be in fairly good shape at 2 1/2 years in. People look at me surprised and tell me how good I am doing. Wow, go figure, something is going right. After visiting so many of these support groups online I now can get a good feeling that I will survive a long time with all the new stuff they are coming out with. I guess I am writing this to reach out to all who are just diagnosed and letting them know that there is hope and do not feel like you are coming to the end but actually being allowed time to regroup and enjoy what you got.

March 2015 – PSA 12ish

Biopsy results – Gleason 9

May 2015 – RRP- Surgical Pathology – 1. Gleason's 4+4 (8/10), bilateral, tumor 5% of gland volume. (See comment)

Diagnosis Comment: 1. AJCC classification: pT2c N0, 2. Tertiary Gleason's grade 5 carcinoma component is also present.

First follow up PSA –9.61- Negative Scans – 3 Mo. Lupron

PSA decline every 3 months from 9.61, .41, .14, .03, finally

[JamesAtlanta]

That is huge news! Congratulations! And thanks for sharing your story. It is an excellent reinforcement of hope ... when things sometimes things feel overwhelming, hopeless, and predetermined how they will turn out

What a breath of fresh air for us all as we start the new year! And a wonderful reminder to ‘never give in’, as one of our brothers keeps saying!

James

[Apollo123]

Thanks for your positive story. 👍

[Dr_WHO]

That is great news! Nothing to feel guilty about. Just the opposite! Anytime one of us can tell Cancer to take a hike is a great day.

Like you I have Stage four cancer. Like you I am one of the lucky ones (at least for the last two years). I have Stage 4D1, T3N1 cancer that had spread to the pelvic lymph nodes. While Stage 4D1 is advanced, it is not as bad as Stage 4D2, where it had spread to the distant organs or bones. The thing that makes it a bit more of a worry is that I have Ductal cancer, a rare form that is hard to detect or treat and that effects about 0.4% of the cases. It was prognosis of Ductal even more than it being Stage 4D1 which gave me an initially very poor life expectancy. That said, I tried to be aggressive. Had to argue long and hard to get surgery as it was in the lymph nodes. Back in early 2016 they rarely operated as the cancer had spread past the prostate. Thankfully today, surgery is becoming more common for Stage 4D1 and 4D2. This was followed up with 38 rounds of radiation and Lupron with Zytiga added to the mix a year later.

So far, two years in, the cancer is in check (have to have scans every three months as my form of cancer does not raise your PSA). While the side effects from the treatments suck, they are nothing compared to some of the other treatments that other warriors here are undergoing. I am doing a lot better than I would of thought possible with the original diagnoses and life expectancy.

Indeed, I feel very grateful. I feel very grateful for where you are. I just wish that everyone here can have similar results.

The fact that I am going as well as I am just wants me to support the others here that are dealing with any stage of cancer.

[Sisira]

Wow! what a great story. Very inspiring though only 2.5 years have passed with no apparent progression.

My congratulations for your jubilation too!

I don't quite understand why you say your PCa is Stage 4 at diagnosis after having undergone RRP etc. You have mentioned in the end of your post that the AJCC clasification is pT2c No. T2c is not Stage 4 PCa.

I was diagnosed in February 2015 for aggressive PCa of GS9 when my PSA was 7.9ng/ml

Underwent RRP in March 2015, followed by 36 sessions of IMRT plus continuous ADT2 ( Zoladex and 50mg Bicalutamide ) for 2 years ending January 2017. My PSA went down to undetectable in 3 weeks time after RRP and with the other adjuvant treatments my PSA checked every 3 months has remained at 0.008ng/ml up to now.

According to my Pathology Report my PCa Staging was : T2c No Mo. I am not Stage4!

BTW I have a feeling you are much younger to me and you will do very well in managing your decease with your usual positive attitudes and proper treatments.You will have the fullest support of the brothers and sisters ( wonderful caregivers ) in our group. My age is 71 and I have 6 grand children who make me forget about my prostate cancer!

Welcome to our Battalion and Happy New Year to you!

Sisira

[shealy in reply to Sisira]

The pathology had classified the cancer before getting the 9.61 PSA results at follow-up. Doctor said the cancer is likely in bone or organs but is just not big enough to see in scans. That is why he said stage four. They can't see micro tumors but they are pretty sure it is micro-metastatic.

[Sisira in reply to shealy]

Shealy,

In any PCa, especially when GS is high, even when the tumour is confined to the organ ( prostate gland ) there is the possibility of microscopic cancer cell leakage to our blood vascular and lymphatic system ( micro metastasis ). This is the potential risk we always carry until the cancer is cured. If the doctors classify a PCa as Stage 4 only on this condition, then at least 90% of all diagnosed cases including me should come under Stage 4 ! This is not correct. In staging there are certain specific criteria among which it is not micro metastasis but other clinically significant pathological factors, mainly the cancer spreading out of the capsule invading other organs, metastases seen in the lymph nodes, bones etc. detected in the pathology report. If your doctors had good and strong reasons to doubt Stage 4 there should be some clinical evidence. The only justifiable reason I can see is your PSA has remained at 9.6ng/ml even after 7 weeks post surgery meaning a significant volume/burden of residual PCa growing somewhere in your body, now dormant being suppressed by ADT. It can't be merely on the possibility for micro metastasis! I am not a doctor but this is my opinion.

Sisira

[j-o-h-n]

To shealy.... you're on a roll.... now's the time to play Lotto...

(if you hit the big one I get 10%) ----->FIST BUMP<-----

Good Luck and Good Health.

j-o-h-n Friday 01/05/2018 1:34 PM EST

Brrrrr COLD