New to the club: Greeting all, i'm a... - Advanced Prostate...

Advanced Prostate Cancer
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New to the club

Northcaptain
Northcaptain

Greeting all, i'm a new here. Found this support group while scavenging the internet for information about the disease. I've just been diagnosed this week with a "aggressive localized prostate cancer" as they say. No symptom yet. PSA is 15, G8 and both the biopsy and the MRI says no invasion outside the prostate capsule. Scintigraphy and Bone scan next monday. I'm in Canada on public healthcare and i have talked to urologist who suggest RP with ePLND...but i'd like to meet an oncologist first to look at more systemic treatement like Neoadjuvant Chemotherapy prior to Radical Prostatectomy.

If i can't find an onco-uro open minded rapidly in my vicinity on the public healthcare, i may elect to go to New York in private medecine. Any recommandation of a oncologist favourable to systemic approach would be welcomed.

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You may be interested in this:

pcnrv.blogspot.com/2018/11/...

Indeed very interesting. It shows comparable outcomes but at the end mention that morbidity is not the same. Since i began at 55 years old to have mild peeing problem (BPE), i think that on the long term the prostate need to be removed. I have talked with surgeons and they are ready to remove with or without ePLND. I'm not afraid of an RP made with state of the art surgery (Retzius sparing) but i wouldn't want to have all lymph removed just because statistically it is known that 35 % or so percent in "aggressive cancer" have node invasion. I'd like to look at the whole picture :) I am currently on a 7 day fast because i have witness in the past a 30 % reduction of PSA after a fast of 4 days. Its not a cure but an experiment. If after a 7 days fast the PSA still react, then i think its responsive to chemotherapy. (just thinking…)

No, it did not show "comparable outcomes." In the Tilki study, the 5-year PCSM was not significantly different between MaxRP and MaxRT. In the much larger Kishan study, the 5-year PCSM was twice as good with MaxRT. But 5 years is not enough to really show a difference. In the 10-year Kishan study, the 10-year PCSM was 13% for brachy boost therapy vs 23% for RP.

You may find that your peeing problems disappear with hormone therapy, which starts 2 months before radiation.

I do not know if Retzius sparing is a good idea with high risk PC. I hope you are asking for intra-operative frozen sections. They do not remove all lymph nodes - only the ones they can find, and they are hard to find. If any show cancer, they always follow up with radiation to get the cancer they can't see. Radiation impedes healing after surgery.

My husbands first Dx 10 years ago they did radiation and then two years hormone therapy. I see where now some get the hormone prior to radiation. None the less we did get 8 years after the hormone shots before recurrence

Hi Allen can you explain what is the "intraoperative frozen section" ? this is part of the surgery process ?

It's somewhat controversial. The idea is to have a pathologist standing by during the surgery. The surgeon cuts progressively wider and they freeze the tissue which the pathologist examines under the microscope. The surgeon stops cutting wider when the tissue no longer has cancer in it.

Sorry that you are now on our team. I joined the team that no one wants to be on, about 6 months ago. It was very tough for me to think about dying and leaving my family, but mentally and physically I am much better. I started w

Lupron, Zytiga and Prednizone. PSA has gone from 10.6 to .07. Testosterone from 430 to 36. Hot flashes aka Power Surges has been my only side effect -no problem. Appreciate the small things, hug longer and do something nice for someone else. Good luck to you!

Hi Fitz, indeed prior to the diagnosis we live in a dream condition thinking we are immortal. Making plan for the future. I just signed up for a car with 5 years loan and it make me think a lot if i'll have the opportunity to sign for another one after LOL. For sure i will update my will and make sure everything is in order now that i feel more "mortal". I wish you to find that inner peace.

Hi Captain I'm on Zytiga,Prednisone and Eligard which is a six month Lupron shot. My PSA has gone undetectable for 10 months now . I was given this as my first line of treatments. I feel good and side effects are minimal. You do need to be prepared for significant life style changes. E.D. ,weight gain , fatigue but the trade off is I'm still alive and intend to stay that way for a long time. Best of luck. Leo

Hi Leo i had a look at your story and congratulations, it is not an easy path. You have all my respect. thanks for sharing.

Systemic treatments are not curative . If you’re PCa is contained you have a chance for a cure . Neither radical therapy or systemic therapy come without side effects.

Hi Break60 i have read your profile and you have all my admiration for the path you have walked so far. I have yet to know with scintigraply and bone scan monday (tomorrow) if there is something "out there". For the moment the grading is cT2. The RP operative field has changed since the introduction of the Retzius sparing approach which in less than 60 minutes console time remove the prostate and leave intact all anatomic structures. Pad free in 1 month for almost 100 %. This is the RP surgical approach of the future but it is not practiced globally. I have found less than 10 surgeons worldwide that does it.

Is funny that you use the word "cure". I found one day in a washroom a grafiti on the wall; "Life is a sexually transmitted disease". We all gonna die from it but we don't know when and how. :) God bless you.

How about “ Life is fatal”... I saw a quote from a chech author.. “ The meaning of life is that it ends”. I’d take that another step and say “ life is short, don’t waste it”. You caught this way before I did.. good job..Pray they get it all with the RP .. Then your odds are great to live a long time.. Take excellent care of what you put into your body from here on out. It’s Not the predicted path that we had hoped for, but cancer is an epidemic. You’re not alone. I wish you success with treatment and a long happy life..

Hi Lulu700 thanks for your insights. Any disease (but his one particularily for man) challenge our impression of immortality. We make plans for the future... altought we would be living in any other place on earth we would (probably like 90 % of the human beings on this planet) live poorly one hour at a time.

Time to think :) cheers

Welcome to the club nobody wants to join. If your cancer has not spread outside the prostate, you're in luck. Either surgery or implant radiation are options. The immediate answer to your urination problem is a catheter (make sure it's changed regularly so it doesn't get clogged up). A TURP will also take care of the urination problem if the cancer therapy isn't working well enough.

Keep us posted and remember attitude is everything. Do all you can to keep your spirits up - and to keep your caregivers' spirits up also! Courage, mes braves!

Good advice Steg ! Thanks. I don't have urination problem yet but i just had the first mild start of it. My MD prescribed me Cialis 5mg daily and upon experimenting when i have a episode of contention i take on 5mg and its good for 3 days... and most often it goes away. I ended up taking 2 or 3 caplet per month. I'm fine with that but i know is a tickling clock...

One ibuprofen an hour before bedtime was like a miracle drug for me . Did not help with frequency but really, really helped with difficulty. Worked for me until 1st chemo solved that problem in days.

Hi Monte looks like your contention was caused has much by inflammation than by BPH ?

Stage 4 prostate cancer, cancerous enlarged prostate, extensive bone mets, lympth nodes. Did not know that at the time. Thought I had BPH. An internet site recommended ibuprofen for difficulty, and it worked. Never did try flomax because went immediately to chemo. Chemo solved problem immediately. Metastatic already so still have prostate as is usually no use in removing, etc. (I think that is becoming controversial.) Once it is metastatic is considered incurable, so do what you need to do. Most here will recommend hit it hard, hit it fast. Best of luck to you.

If you have to have it, you have one of the best chances of beating it that I've seen here. Good luck and hit it hard one way or the other.

Well I just got the scintigraphy and bone scan report. All clear. No invasion, no mets. I'm starting to think that we catched it in time.

I think that you have.. caught it earlier than later.This greatly improves your longevity...I commend you.. Now An all out healthy lifestyle and you’ll be around a good long time.. I welcome you here .Sorry about my comments on “ life is fatal” ... we are all in the same craft... I believe that you’ll live a long happy life.. We all share in this hope.. Scott

Hi northcaptain my now husband was diagnosed a month ago with stage 4 with Mets and as an added bonus neuroendocrine cells which is very aggressive. He is on casodex daily and had his first hormone injection three weeks ago and started chemo 2 weeks ago. I know it’s still early but the only side affects is fatigue, light dizziness, he sometimes will get shortness of breath. His oncologist is on top to make sure his hemoglobin is not below 7. We head down to MD Anderson the day after Christmas to weigh out all options. This forum has been great in obtaining information about this disease. This group has really helped us a lot

Thanks for sharing, wish you good luck from the bottom of my heart

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