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Living with Prostate Cancer: Meet others & introduce yourself
Welcome to the Prostate Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet others living with prostate cancer or caring for someone with prostate cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.
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Let's start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?
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Mayo was my first call. Unfortunately, my Medicare is tied up in an Aetna Medicare Advantage PPO that Mayo is not contracted with. I'm glad to hear that your treatment is has been stellar.
My MRI showed a suspected prostate RAD 4 (out of 5) lesion, not mets. So depending on the results of the biopsy and subsequent treatment options available at Banner MD Anderson in Gilbert, I may be looking at getting a second opinion.
Sorry for your crappy diagnosis. Consider a PSMA PET CT. It will show any minute spread and allow for appropriate treatment. It's a tough psychological process so don't hesitate to ask for help with coping and sleep. I took a small amount of xanax for a while. My heads in a better place now. Good Luck. I have heard good things about Banner.
I also use the VA in conjunction with Mayo. Consider that if your a vet.
Greetings! My name is Dennis and I am 69 years old. I have been lurking here for a few weeks and decided it was time to introduce myself and tell my story.
In early November, I had a routine visit with my PCP’s office and the attending NP mentioned my PSA (4.63) had been steadily increasing and she recommended that I see a urologist. I was fortunate to be able to get an appointment the following week at which time arrangements were made for an MRI and biopsy. The MRI was clean, but the biopsy returned two of twelve cores with no more than 30% cancer (Gleason 3 + 4). The pathologist subsequently sent off a sample for Decipher testing. Meanwhile the urologist and I discussed treatment options and we both agreed that “active surveillance” seemed appropriate. The doc also sent me for a PSMA PET CT scan which showed the cancer was confined to the prostate. So far, so good.
Unfortunately the Decipher results then came back as high risk (0.84), so the “active surveillance” option was no longer on the table. My urologist and I discussed the pros and (significant) cons of surgery, radiation, and hormone therapy. He offered an opportunity to separately meet with a surgeon and RO to get more information., but I had already done some homework and felt that the radiation route would be best for me. I asked the urologist if the radiation treatment would be accompanied by hormone therapy and he replied that it would and he would be giving me injections every few months.
The next stop was a visit with the RO. He and his nurse spent a full 2 hours with me getting my background, discussing the process and side effects, and giving me a quick physical exam. The most interesting part of this discussion was that the RO was adamant that radiation (IMRT) would cure me without the need for hormone therapy. I reminded him of the high Decipher score, but he did not waver. His opinion was basically that “the cure was worse than the disease.” The hormone therapy would offer marginal benefit, but subject me to the well documented side effects. In short, over treatment.
So that’s where I am now. I go back to the urologist on March 9 to further discuss this with him and set up a time for the spaceoar insertion. My wife and I had previously made plans to travel for 3 weeks in April/May, so the treatment won’t begin until we return.
That’s my story and I’m sticking to it….at least for now. Thanks for reading and feel free to chime in with your opinions and thoughts.
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2 ReactionsNov 18, 2022 I had robotic RP and the surgeon spared the nerves on one side. Pathology reported clean margins and lymphs were negative. Pre surgery PET detected cancer cells only in the prostate and encapsulated.
Post surgery the surgeon reported cancer was encapsulated in the prostate.
Just prior to surgery PSA had risen to 10 and after biopsy Gleason of 8.
I just had my first post RP PSA and it came back 0.03 and I find this worrisome. My worry is made worse because I allowed myself to believe, foolishly, it would be 0.00. I see the surgeon tomorrow after pelvic PT (3rd appt).
My PSA started to rise over 10 years ago was being monitored and in 2014 a biopsy was done after it reached 4.5 but found nothing. Then 5 years ago it jumped to 8, fell to 6, then 5.4 then back 6.4, then down etc. Then 10 in July 2022. The decade + anxiety with up and down PSA's has been pretty bad experience with tests every 3 - 6 months. I know, preaching to the choir....
Now at 0.03, and panicky, I hope the surgeon has something to relieve some of anxiety.
I've been left with bad incontinence and ED, topics for another time.
I'm 73 and retired in MN. I'm glad this forum exists and until this morning I have not had anyone to share info with others coping.
Thank you
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2 ReactionsThanks for sharing, I am also very concerned with the short and long term side effects of the hormone therapy, which Doc did you see that told you this, our consults have been you must...
@bonifasm
To be clear, I am not a patient at the Mayo Clinic. The RO I saw is with a Boston area hospital group.
lb1049:
Prostate Cancer Foundation PCF.org has a webinar series; Jan 17 2023 program on rising PSA after RP or Radiation (replay, transcript and Q & A).
May be relevant to some of your thoughts and concerns.
Best wishes to you and all of us.
How did your case work out. My husband had the hifu but his psa hasn't changed yet.
Shelby: check what radiation machines are available. Mayo does not have a MRIdian machine with 2 mm margins. The choice can impact side effects from damage to healthy tissue. They do have Proton but it is different. There is also cyberknife. Most RO’s will say the outcomes are the same but drill down about margins and protecting healthy tissue from one machine to another.
dgd1953: I had the same 3+4 Gleason but my psa was 10.2. I had the decipher as well but showed a lower risk one modal treatment was ok. I spoke with 5 RO’s one of which suggested hormone therapy on top of radiation. The RO I ended up with in Orlando, like you, suggested skipping the hormone therapy. Researched different types of radiation machines. I decided on the MRIdian machine from Viewray. Tight margins with the radiation is really important. They use 2 mm and it is the only combined MRI and Radiation machine in existence. I had 5 treatments ending on Valentine’s Day this year. There is cyberknife, proton and others but I am happy with my decision. Again, margins impact that healthy tissue.Consider spaceoar to protect your rectum from radiation. Many RO’s will say the outcomes are the same regardless of the machine or surgery but the quality of life, short, medium and long term, made a difference to me.
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