Living with Prostate Cancer: Meet others & introduce yourself

64 years old...Waiting to have 4Th biopsy. MRI showed one pirad -4. Told it’s confined. Biopsy 12/16. Wait and see. Nervous!
If that wasn’t enough. Dr informed me my groin lymph nodes are swollen ( which I already knew) and I told him I had sarcoidosis at age 35 and have had swollen lymph nodes since then. (Almost 30 years) 8 years ago my urologist did a ct scan and confirmed they were swollen and did follow up scans at 3 month. Then 6 months later then another a year later so I was followed for about 21 months. My new prostate dr is saying it’s possibly lymphoma....zero symptoms but will follow and be sure,

Hi. My psa was 12.9 in march 2018. Had biopsy in may confirmed cancer 12 samples 8 positive 1 gleason 8 rest 7 and below. Decided on surgery. Had surgery sept. 27 2019. 21 lymph nodes and prostate removed. Positive in 2 lymph nodes and also a gleason 9 when cultured. I was told the gleason score will always be higher after prostate removal. I consulted with my doctors at mayo and they also recommended radiation even though my psa was less than .1 three months after surgery. I also had a consult with my radiation oncologist in my home area and also another psa test in march 2019. Results on psa was .05 which I was told was very good, but he also said to do hormone treatments and radiation to be safe. Well decided to do the treatments, started hormone in April didn't seem to bad the side effects the first month. Had a 6 month Luprone shot a month later other than the hot flashes it didn't seem too bad. Started radiation treatments then end of June. 39 treatments, 27 regular and 12 boosters. If you have hemorrhoids good luck, cause at about 5 weeks they flare up. I used every medication I could find to ease the pain, very little luck. Finally 3 months after radiation the pain of going to the bathroom is easing up. If it wouldn't of been for the hemorrhoids the radiation would of been bearable. Had my second Luprone shot in October the side effects are showing up now. I had an upset stomach almost every day and more hot flashes feel light headed and dizzy at times. Also have to get up more at night to urinate than before I had cancer. Which I was told is a side effect of the treatments. But just done another PSA after 100 days after radiation. My PSA was less than .01 which is a very good sign. Have 2 more Luprone treatments to go and hopefully have got this thing licked.

have they said anything about the side effects of the radiation? Radiation through the butt or thru the belly? I had mine through my butt and now 12 years later, have bowel and bladder issues from the radiation. my psa is and has been low like yours. good feeling. never had chemo or horomone therapy and had radioactive seed implant and no surgery.

Welcome @mackenzie1. Waiting is the worse. Was your PI-RAD (Prostate Imaging–Reporting and Data) 4 or -4? I thought that the scores were based on a scale of 1 to 5.

Well, Wednesday is the day I get the Fusion Guided Biopsy results and hopefully getting a definitive answer and what to do next. My PSA is at 15.6, Free PSA is at 6 and my PI-RADS v2 Assessment is 5. The MRI I had on 11/4 shows a lesion measuring 2.2 x 1.1 x 1.5 CM. All of this points to cancer. These last 2 weeks of waiting since the Biopsy has been HELL.

Assuming the worst I would love to be able to do the Proton treatment but the 6 to 8 weeks of treatment rules that out. Cyberknife sounds interesting since it is 2 to 5 days of treatment but I'm worried that the lesion is too large. Also the nearest hospital that does CyberKnife is San Francisco. I have to travel 3 hrs to get to a Urologist that I'm comfortable with for diagnosis but I'm 6+ hrs away from either Portland and San Francisco where I could find a MD to remove the cancer. Another option would be the LA area USC or UCLA since we have family there and my wife could stay with them if I need to get the Robotic Radical Prostatectomy do. My fear is with these distances what the heck do I do with followups; would I have to go the 6+ hrs or could the MD located 3 hrs away be able to do it?

Enough of my ranting,
@dandl48 Dave

Hi Dave @dandl48
I'll be thinking of you tomorrow and tonight as you prepare for your biopsy tomorrow. I can imagine the waiting has been tough.

You ask about travelling distances of 6+ hours for follow up. I know that some people choose to be treated at Mayo, but see their local oncologist or MD for follow-up. The local doctor and Mayo specialist are in contact with one another. And the patient also can remain connected with the Mayo Cancer Care team through the online patient portal. I'm bringing @waynen @semeon @carlsonte @hodagwi and @kujhawk1978 into the conversation because I believe they have travelled long distances for treatment. They may have experiences with follow-up procedures from various institutions.

All the best tomorrow, Dave.

Good luck. I haven’t been diagnosed yet, but I’ll see my dr next week to see next step. I maybe traveling to Cleveland clinic in Weston, Florida for treatment if I have what I suspect is prostate cancer.

I live here in Kansas City and have a radiologist, urologist and oncologist on my medical team who are quite competent. I went to Mayo for two reasons, I liked Dr. Kwon’s approach to treating PCa and they had the C11 Choline scan.

After the initial scan and consult in Jan 17 all treatment has been done here in Kansas City by my medical team - the Lupron shots, taxotere and the 25 more IMRT treatments. My radiologist did consult with my Mayo radiologist about the dosage, margins, boosts to the identified lymph nodes, treatment field...

I did return to Mayo three more times for subsequent C11 Choline scans and consults. Since I finished my last Lupron shot in May 18 all my urology labs and consults have been done here in KC. I updated my Mayo team through the portal and my medical team has also followed up with Mayo.

It’s your decision, depends on what your local medical team has in terms of medical technology, their approach to treatment and willingness to work with other medical experts as a team to develop and implement the best possible treatment specific to the clinical data associated with your PCa and your preferences as you balance quality and quantity of life.

I am blessed by a group of medical experts from a variety of practices and institutions who work together, leaving their egos out of the decisions.

Kevin

@carlsonte Best of luck to you!

Pirad 4