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?

Hi Group! I was diognsed with PC at the age of 49. I had surgery to remove the prostate. My Gleason score was a 7. The pathology report indicated that there were tumors on the margin and could not rule out that the cancer may have spread. The first couple of years my PSA was undetectable. The next couple of years it was detectable at .1. The next few years it was .13, .15, .17. This year (8 years post Surgery) it has risen to .22. My Dr wants to do a 3 month follow up PSA and go from there. Initially at the appointment with the .22 reading he discussed an MRI of my pelvic area and meeting with a radioligist oncologist. Then he called me the next day and said let's wait and do a 3 month follow up PSA. I'm debating on whether to get a 2nd opinion.
Thoughts and advice would be appreciated.

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@matt12054

Hi Group! I was diognsed with PC at the age of 49. I had surgery to remove the prostate. My Gleason score was a 7. The pathology report indicated that there were tumors on the margin and could not rule out that the cancer may have spread. The first couple of years my PSA was undetectable. The next couple of years it was detectable at .1. The next few years it was .13, .15, .17. This year (8 years post Surgery) it has risen to .22. My Dr wants to do a 3 month follow up PSA and go from there. Initially at the appointment with the .22 reading he discussed an MRI of my pelvic area and meeting with a radioligist oncologist. Then he called me the next day and said let's wait and do a 3 month follow up PSA. I'm debating on whether to get a 2nd opinion.
Thoughts and advice would be appreciated.

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Some things to consider:

You may want to go to the MSKCC and use their online tool to calculate PSADT and PSAV. This will give you a clinical data point on the aggressiveness of your PCa.

Next decision, imaging…the two approved by FDA are the C11 Choline and Aximun. There is also a variety of MRIs. The challenge there is at low PSA such as you have, they may not be able to identify where the recurrence is.

So, what to do..

If the PSADT is greater than 12 months your medical team may be right, wait until the next labs and see if there is any change in the progression that may indicate a change in the rate of the spread.

I understand that generally SRT has greater “success” of progression free survival and overall survival at lower PSA so you could pull the trigger now. If you make that decision then you have to decide what that treatment is…

Not so long ago and sometimes even today the medical community will say radiate the prostate bed only. More and more that option is falling out of clinical practice and being replaced by combined therapy that involves radiation to the prostate bed combined with short term, say six months of ADT. If you go with that combined regimen then you may want to talk with your medical team about including the PLNs, Mayo has data that shows more often than not BCR in your case is already in the PLNs and SRT to the prostate bed only does not work.

I know this because of my personal experience…surgery, BCR, failure of SRT, that was to the prostate bed only, aggressive PCa, GS8, rapid doubling and velocity times. When I finally had the C11 Choline scan at Mayo it showed the PCa was in four PLNs, fortunately no organs or bones. I finished a combined regimen of six cycles of taxotere, 18 months of Lupron and 25 radiation treatments in May 18. PSA has been undetectable since.

The jury is out but generally advanced PCa is considered as incurable. So, now you manage it as a chronic disease, treat, look for PFS, monitor, treat, repeat..,

Kevin

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I have been diagnosed with prostate cancer at an intermediate stage and will visit Mayo in AZ soon to explore their pencil beam therapy. I would like to find out how other Mayo patients in AZ felt about the pencil beam treatment, where they stayed for their therapy, and any suggestions they have. Many thanks.

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@bobvan

I have been diagnosed with prostate cancer at an intermediate stage and will visit Mayo in AZ soon to explore their pencil beam therapy. I would like to find out how other Mayo patients in AZ felt about the pencil beam treatment, where they stayed for their therapy, and any suggestions they have. Many thanks.

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Responding to @gvanourek , I am currently under pencil beam therapy for similar stage prostate cancer.
I feel blessed to have this therapy at Mayo, and would not discourage you from this course of treatment for any reason. It is gold standard treatment at a world-class facility.

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@vernonkent

Responding to @gvanourek , I am currently under pencil beam therapy for similar stage prostate cancer.
I feel blessed to have this therapy at Mayo, and would not discourage you from this course of treatment for any reason. It is gold standard treatment at a world-class facility.

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Thanks for these encouraging words. I am very impressed with what I have heard about Mayo. Any side effects of note during or after treatment? Are you local in Phoenix or did you reside in a hotel or condo? Any recommendations for places to stay? Happy to chat if that is easier. Please private message me.

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@bobvan

Thanks for these encouraging words. I am very impressed with what I have heard about Mayo. Any side effects of note during or after treatment? Are you local in Phoenix or did you reside in a hotel or condo? Any recommendations for places to stay? Happy to chat if that is easier. Please private message me.

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@gvanourek — I began Lupron shot Dec. 11 with some side effects, though tolerable. Mainly random “hot flashes” and of course, zero libido. Pencil beam radiation began 8 days ago. No side effects from the pencil beam radiation, at least so far. All this is better than risks of surgery at my age (a healthy 76) and it all will be worth it to be rid of the cancer. Everyone is different but so far my experience has been quite good. Can’t say enough good things about the people and treatment at Mayo. Happy to stay in touch if you have any other questions.

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Thank you for this update. I will be in touch separately. Best of luck with the treatment.

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@vernonkent

@gvanourek — I began Lupron shot Dec. 11 with some side effects, though tolerable. Mainly random “hot flashes” and of course, zero libido. Pencil beam radiation began 8 days ago. No side effects from the pencil beam radiation, at least so far. All this is better than risks of surgery at my age (a healthy 76) and it all will be worth it to be rid of the cancer. Everyone is different but so far my experience has been quite good. Can’t say enough good things about the people and treatment at Mayo. Happy to stay in touch if you have any other questions.

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I received a Lupron injection 5 days ago and so far so good. How long after the shot did you begin feeling hot flashes?

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@frankstags

I received a Lupron injection 5 days ago and so far so good. How long after the shot did you begin feeling hot flashes?

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Each man reacts differently to side affects from Lupron. It took about 2 weeks for me. The best defense against the S.E.’s is exercise. I walk and workout not to build muscle but trying to maintain my muscle’s. I am a Gleason 9 with a lot of bone Mets. I have been on Lupron, Zytiga, Zometa and Prednisone for a year. Good luck on your journey.

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I did 18 months of Lupron from Jan 17-May 18.

Keep in mind that there is a flair associated with each Lupron shot so if you're within five days of the shot, your T may have gone up some before it plummeted.

Don't worry, it is likely the side affects will come…soon enough.

Hot flashes, by and large most men did, certainly I did. How did I deal with them?

Mostly physical.

Exercise, doesn't eliminate them but may play a role in moderating them. In addition, exercise will help with the metabolic affects, fatigue, weight gain…not sure about the joint and muscle stiffness, felt like I was 100 years old inset instead of 61!

Some things I did.

I never ran the heater in my car over the two winters in Kansas, my friends did not relish riding with me. Fortunately I have dual climate control so my passengers could set their temperature. I remember my daughter came home for Christmas, I loaned her my car so she could go have coffee with friends, When she came back she was curious why I had it set to AC…I smiled and said, in about 40-50 years you'll understand!

At the gym I never swam in the heated pool, just the unheated one.

I drank a lot of ice water, had handy cooling towels when I needed them.

I often slept with the covers off and just a t-shirt and underwear.

In the winter, Sprig and Fall I would often just go out on the deck when a hot flash came on. Winter became my new favorite season.

Some things I didn't do.

I never went the medical route, weighted the SEs of those drugs versus the hot flashes…

I simply could not give up alcohol or coffee though I did cut back on spicy foods.

It took about six months after the Lupron cleared my system before the hot flashes went away.

I can't remember how long after the first shot the hot flashes started but it was within the first 30-60 for sure and continuous after that.

Kevin

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@frankstags

I received a Lupron injection 5 days ago and so far so good. How long after the shot did you begin feeling hot flashes?

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Replying to @frankstags
First hot flash for me was probably about two weeks after the Lupron shot. They have continued at seemingly random times.

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@vernonkent

Replying to @frankstags
First hot flash for me was probably about two weeks after the Lupron shot. They have continued at seemingly random times.

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I had the hot flashes quite often. My Doctor prescribed a lose dose of generic Paxil. It reduced flashes to maybe 1 per day.

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Hi, I finished my proton beam therapy a year ago January 23. The main side effect from the proton beam therapy was pain during urination. Unfortunately, the uretha is going to get radiated. Mine began about a week after the treatment started. They prescribed flomax to address the pain. It solved the problem, but over the last year I've tried to stop flomax, but regretted it and started it again. I also had strong urges at unfortunate times, which went away after six months. As far as lupron, I've had some hot flashes, but actually not real frequent. More bothersome was the weight gain, and tired feeling. In May, I should be free of the lupron effect.

I had my treatment at the Phoenix Mayo and they are first class. We have a condo here so housing wasn't an issue. I did meet several people who stayed for free at the lodge next to the Mayo Clinic. It's worth checking out. Mayo does have a service to help find housing.

Good luck. Take the tour they give and get to know the other guys wearing those "cute" shorts in the waiting room. You all have a lot in common.

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@waynen

Hi, I finished my proton beam therapy a year ago January 23. The main side effect from the proton beam therapy was pain during urination. Unfortunately, the uretha is going to get radiated. Mine began about a week after the treatment started. They prescribed flomax to address the pain. It solved the problem, but over the last year I've tried to stop flomax, but regretted it and started it again. I also had strong urges at unfortunate times, which went away after six months. As far as lupron, I've had some hot flashes, but actually not real frequent. More bothersome was the weight gain, and tired feeling. In May, I should be free of the lupron effect.

I had my treatment at the Phoenix Mayo and they are first class. We have a condo here so housing wasn't an issue. I did meet several people who stayed for free at the lodge next to the Mayo Clinic. It's worth checking out. Mayo does have a service to help find housing.

Good luck. Take the tour they give and get to know the other guys wearing those "cute" shorts in the waiting room. You all have a lot in common.

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Thank you for this info. May I ask a few questions? How long did you stay on Lupron? And how long have the negative side effects of Lupron lasted? Do you know how common the urination pain is among proton patients? Why did you wish to stop the Flomax? Your side effects sound worse than what I have heard from most others. Do you fell that is true, or are your side effects representative of most proton patients you have met? I certainly wish you the best in your recovery. Thank you for honestly sharing..

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@bobvan

Thank you for this info. May I ask a few questions? How long did you stay on Lupron? And how long have the negative side effects of Lupron lasted? Do you know how common the urination pain is among proton patients? Why did you wish to stop the Flomax? Your side effects sound worse than what I have heard from most others. Do you fell that is true, or are your side effects representative of most proton patients you have met? I certainly wish you the best in your recovery. Thank you for honestly sharing..

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The Mayo staff said that the urination issue is common since they can't protect the uretha from the radiation. It's not a problem, if I take the flomax. The first time I stopped taking it to see what would happen. After a couple days, the pain came back. That was about 4 months after stopping the treatment. The second time we were on a trip and I forgot the flomax. That was about 8 months after the end of my treatment.

In regards to lupron, I had 3 shots 6 months apart. My Gleason score was 8. It became clear to me that not everyone has the same treatment. I had 20 radiations and some had as many as 44. Also, some didn't have any lupron treatments. I asked my doctor why the difference and he said it depends on the severity of the problem. I don't know if you've had a bone scan and MRI of your organs. Mine were clean, which is why I got only 20 treatments. One guy had his cancer spread outside the prostate and he got 44. Your radiation oncologist will consult with a team of doctors to see what treatment you should receive. I also met one guy who had it spread to his lungs and received chemo and radiation. They treat each case separately and try to make sure the cancer doesn't come back. That's the job of lupron. Even if you have surgery, you should take steps to prevent any recurrence. There's some good research that supports the use of lupron to prevent any recurrence.

Best of luck to you on your journey. Take it all in.

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