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.

Follow the group. Browse the topics or start a new one.

Let’s start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?

@waynen

Colleen asked about side effects. The hormone therapy does result in hot flashes, mine weren't as bad as some others. It also weakens bones, requiring taking calcium. It can increase breast size, but mine didn't change much. It also affects sexual ability. Fatigue was probably the most noticeable.

For radiation, the urethea is going to get hit. It will affect urination. Pain when urinating and urgency are the two most serious issues. They reduced the effects with Aleve and Flomax. The side effects from radiation are gone now.

Long term, all side effects should be gone. One advantage of Proton Beam Therapy is that it limits tissue damage, so only the prostrate got hit with the beam. The good cells will regenerate, but not the cancerous.

Also, during treatment I was able to continue normal activity, which is what they encourage.

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I have a good friend who just did the hormone and radiation therapy after previously having had surgery to take out the prostate. He was expecting various consequences but said that the hormone therapy did not produce the hot flashes as expected, so effects can vary for different people.
Since your last post on the Proton Beam radiation was 8 months ago I'm wondering if you have anything to add about early or long term side effects and if you still think the Proton Beam was a good protocol for you. I have been leaning .toward surgery but i see a lot of men that have opted for radiation therapy…….

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Thank you for the invite. I currently don’t know if I have prostate cancer, but my PSA has risen from 2.1 to 3.1 last year to 4.2 this year. My GP is suggesting a wait and see with blood test every six months. Is this normal and what would be next step. I’m almost 73 and blessed with good health. Thanx for any advice in advance.

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You really need to see a urologist sooner than later.

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@safari1949

You really need to see a urologist sooner than later.

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Thank you.

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@carlsonte

Thank you for the invite. I currently don’t know if I have prostate cancer, but my PSA has risen from 2.1 to 3.1 last year to 4.2 this year. My GP is suggesting a wait and see with blood test every six months. Is this normal and what would be next step. I’m almost 73 and blessed with good health. Thanx for any advice in advance.

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Carl, I agree with @safari1949 that you should consult with a urologist. A rising PSA can mean several different things, and not necessarily cancer. But it warrants further investigation. Here's more info on PSA:
– Prostate-Specific Antigen (PSA) Test https://www.cancer.gov/types/prostate/psa-fact-sheet

Stay in touch and let us know what you find out.

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@colleenyoung

Carl, I agree with @safari1949 that you should consult with a urologist. A rising PSA can mean several different things, and not necessarily cancer. But it warrants further investigation. Here's more info on PSA:
– Prostate-Specific Antigen (PSA) Test https://www.cancer.gov/types/prostate/psa-fact-sheet

Stay in touch and let us know what you find out.

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Will do. I go for another PSA tomorrow.

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@carlsonte

Thank you for the invite. I currently don’t know if I have prostate cancer, but my PSA has risen from 2.1 to 3.1 last year to 4.2 this year. My GP is suggesting a wait and see with blood test every six months. Is this normal and what would be next step. I’m almost 73 and blessed with good health. Thanx for any advice in advance.

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Hello, I would like to tell you about my experience which started out similar to yours. My General Practitioner by means of a digital exam noticed a rough spot on the prostate gland at the same time my PSA reached just over three. He sent me to the urologist; a biopsy showed cancer with a Gleason score of six.

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Hi, the continuing saga of dealing with prostate. Recap: had prostate cancer in 2004 and treated with seed implants and external beam radiation at Sloan Kettering in NYC. Cancer has continued to be gone. Issue: the radiation damaged tissue so now have a fistual(canal) connecting my bladder with my colon and urine and feces are in both places to the extent that I have frequent(every 4 months) bladder or kidney infections. Doctors want to remove the bladder and remove most of the colon and replace with external bags for the rest of my life. I am told my tissues are too delicate to remove the fistual and patch up the bladder and patch up the bowel to keep the two systems separate again. HELP…anyone have this also or run across other ways to treat this fistual other than with organ removal and bags? I am on daily low dose antibiotics which helps hold down the infections. Been dealing with this for 3 years and hoping medical innovation will evolve to give me more options. Thoughts?

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@hodagwi

Hi, the continuing saga of dealing with prostate. Recap: had prostate cancer in 2004 and treated with seed implants and external beam radiation at Sloan Kettering in NYC. Cancer has continued to be gone. Issue: the radiation damaged tissue so now have a fistual(canal) connecting my bladder with my colon and urine and feces are in both places to the extent that I have frequent(every 4 months) bladder or kidney infections. Doctors want to remove the bladder and remove most of the colon and replace with external bags for the rest of my life. I am told my tissues are too delicate to remove the fistual and patch up the bladder and patch up the bowel to keep the two systems separate again. HELP…anyone have this also or run across other ways to treat this fistual other than with organ removal and bags? I am on daily low dose antibiotics which helps hold down the infections. Been dealing with this for 3 years and hoping medical innovation will evolve to give me more options. Thoughts?

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@hodagwi, as we wait for others from the Prostate Cancer group to respond, I thought you might appreciate meeting others who have similar circumstances, but not due to prostate cancer side effects. You might consider joining these discussions:

– ureterosigmoidostomy https://connect.mayoclinic.org/discussion/ureterosigmoidostomy/
– Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

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@philnob

Hello, I would like to tell you about my experience which started out similar to yours. My General Practitioner by means of a digital exam noticed a rough spot on the prostate gland at the same time my PSA reached just over three. He sent me to the urologist; a biopsy showed cancer with a Gleason score of six.

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What is a Gleason score and what does a six mean?

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@carlsonte

What is a Gleason score and what does a six mean?

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Carl, the Gleason score is the grading system that your cancer team uses to determine the aggressiveness of prostate cancer. Knowing the Gleason score can be used, along with other information gathered during diagnosis, to help recommend the best treatment options.

Here's further explanation from the Prostate Conditions Education Council (PCEC)
https://www.prostateconditions.org/about-prostate-conditions/prostate-cancer/newly-diagnosed/gleason-score

"Typical Gleason Scores range from 6-10. The higher the Gleason Score, the more likely that the cancer will grow and spread quickly.
– 6 or less describe cancer cells that look similar to normal cells and suggest that the cancer is likely to grow slowly.
– 7 suggests and intermediate risk for aggressive cancer.
– 8 or higher describe cancers that are likely to spread more rapidly, these cancers are often referred to as poorly differentiated or high grade."

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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,

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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.

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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.

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@mackenzie1

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,

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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.

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