Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young @colleenyoung, Mar 19, 2019

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?

@markfmckinney

Hi, my name is Mark. I found out 2 years ago I have two forms of cancer in three different areas of my prostate. The Dr. caught it JUST as it manifested it's insidious self. I am supposed to get checked every 3 months as that is what medicare will allow.As soon as the stupid virus reared it's ugly head my Dr. extended my next PSA test by one month. June 1st I am supposed to go in. Now the problem. I am very ill as of yesterday. Flu like symptoms. But I thought one got a cold first, THEN the flu. I am very weak. I do not want to go in for the blood test if I am positive for the covid virus. I do not know what to do and it's driving me crazy. Any ideas? Thank You.

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I understand your anxiety. If you’re feeling ill as you describe, you should contact your MD to schedule a Covid 19 test immediately. You will not be admitted for a blood test until it’s known whether you have been infected. You may simply have the flu or another illness. Assuming the worst will only increase your anxiety. Should you be sick for any reason, it’s o.k. to postpone your PSA test for 2-4 weeks. Prostate cancer is slow progressing, so you’re unlikely to see much change in your PSA level in a short period of time. Take confidence in the fact that there are multiple treatment options for prostate cancer and the survivability rate is high.

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Hello Mark, I understand your concerns but prostate cancer typically grows very slowly. The fact that you were diagnosed 2 years ago tells me you probably have a lower grade of cancer. Do you mind sharing some of your stats, such as PSA history, Gleason scores or Grade Group of your cancer?

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I was diagnosed with stage 3/4 prostate cancer. The disease is outside the prostate, two spots on bones in the hip area, and seminal vesicles. Treatment has been Lupron and soon to start Chemo, waiting for Covid to settle down a little. Anyone have advance stage cancer and have recommendations for treatment and lifestyle. I'm working out , hiking etc, but I notice muscle weakness and soreness all the time.

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@dlmjsh52

I was diagnosed with stage 3/4 prostate cancer. The disease is outside the prostate, two spots on bones in the hip area, and seminal vesicles. Treatment has been Lupron and soon to start Chemo, waiting for Covid to settle down a little. Anyone have advance stage cancer and have recommendations for treatment and lifestyle. I'm working out , hiking etc, but I notice muscle weakness and soreness all the time.

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I, too, am stage 4, with cancer in the bones. Specifically the spine, and spots on the hips, shoulder and sternum. Started with PSA of 541 and immediately started Bicalutamide in February 2019, Lupron in March 2019, 44 radiation treatments starting in July ending in September 2019. We got PSA down to 2.2 at ond time and then it started to rise again getting to 46 or so, PET scan showed the progression to the bones, started Enzalutamide in March 2020, PSA dropped to 20 but then rose again to 30 in May. Bone scan showed no progression in the bones so we will now see where it goes next Thursday.

As for lifestyle changes, I am easily fatigued, I try to walk once or twice every day with a mile being about my maximum range. Hills or upgrades are difficult. I try to stay active in the woodshop. Above all I try to stay positive. This is a long, tiring journey and some days are easier than others. It helps to know others are on the same journey, we are not in it alone.

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@norske46

I, too, am stage 4, with cancer in the bones. Specifically the spine, and spots on the hips, shoulder and sternum. Started with PSA of 541 and immediately started Bicalutamide in February 2019, Lupron in March 2019, 44 radiation treatments starting in July ending in September 2019. We got PSA down to 2.2 at ond time and then it started to rise again getting to 46 or so, PET scan showed the progression to the bones, started Enzalutamide in March 2020, PSA dropped to 20 but then rose again to 30 in May. Bone scan showed no progression in the bones so we will now see where it goes next Thursday.

As for lifestyle changes, I am easily fatigued, I try to walk once or twice every day with a mile being about my maximum range. Hills or upgrades are difficult. I try to stay active in the woodshop. Above all I try to stay positive. This is a long, tiring journey and some days are easier than others. It helps to know others are on the same journey, we are not in it alone.

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Wow, you are a warrior. I'm new to all this and much appreciate your view and what you have gone through. Of the medications what do you think helped most other than the Lupron? I had PSA of 30, Lupron took it down to .02 Gleason score of 10 so very aggressive. Chemo is to help get on top of it. Like you never will be Cancer free, but managing it best we can.

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@dlmjsh52

Wow, you are a warrior. I'm new to all this and much appreciate your view and what you have gone through. Of the medications what do you think helped most other than the Lupron? I had PSA of 30, Lupron took it down to .02 Gleason score of 10 so very aggressive. Chemo is to help get on top of it. Like you never will be Cancer free, but managing it best we can.

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We have not gone to chemotherapy yet. Bicalutamide worked in conjunction with Lupron for most of a year. Enzalutamide is very expensive but seems to be working thus far. I started getting Zolodrondric Acid infusions in April to help strengthen bones. It is a monthly infusion so another comes Thursday. It's hard to say one drug is better than another because so much depends on the specifics of each individual case. No two A Like (that's what I call my woodshop projects also). I have great faith and trust in my oncologist and I understand how he makes decisions based on established protocols so I follow his lead.

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Hello, I'm new to this group. Over the years my PSA kept climbing. When it got to more than 5 my PCP sent me to a urologist. he was not alarmed and said he'd see me in a year. When that next time to see him came, I switched urologists. By then the PSA was 6.2. The new urologist immediately gave me a blood test for the probability of cancer. It came back as a 65% chance. Then I had the biopsy and 7 of 12 samples were cancerous with a Gleason score of 7 (3+4), advanced intermediate cancer. I opted for CyberKnife radiation at the SE GA Health System. I had 5-35 minute treatments, starting on Monday and ending that Friday. @ yr. 2, PSA 0.2; 3 yr. 0.2. I'm discharged with 1yr. telephone follow-up and yearly PSAs. I have 0 after-effects, as if I never had cancer and never had treatments. We now have a new CyberKnife "machine" that is even more precise and powerful. Today I'd have 4-5 25-minute treatments instead.

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I had RP on 4/9/18 for my glee son 7 4/3. I had 2 1/2 years of undetectable psa. My last psa was .15. My dr said to wait 3 months and test again, as .2 is his trigger for radiation. Thoughts?

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Most common accepted definition of BCR is two consecutive readings, 90 days apart. With standard PSA testing, "detectable is .2 and then a subsequent reading .3 or higher. There is much discussion and debate about ultrasensitive PSA and what constitutes BCR,

First thing you and your medical team will have to decide is what is the "trigger" to initiate SRT. The dilemma of course the lower the PSA one starts SRT, the better the outcomes are or so says the "data."

The standard of care says when you initiate SRT is is to the prostate bed, 39 or so IMRT, around 70.2 Gya. There are some emerging treatments that condense those radiation treatments into higher doses in a shorter time, if you go with SRT, something to discuss with your medical team.

With less than three years to BCR and your GS, you may want to consider several things before hitting the start button on SRT:

Should you image with one of the FDA approved scans – C11 Choline, Aximun or now PMSA. If so, understand the lower the PSA, the less likely one of those scans can detect where the recurrence is. The question you may want to ask is "if a scan locates the recurrence, does it change the treatment plan and decision…?'

If you elect to go with SRT then you may have a couple more decisions…given the probability of micro-metastatic disease, should you add short term ADT, say six months to the SRT?
Should you include the PLNs in the SRT treatment fields, not just the prostate bed?

Another thing to consider, obtaining sufficient reading to calculate PSADT and PSAV, if PSADT comes back at <12 months, you may just continue to monitor until the data from labs and imaging says treat, if less than three months, well, make a decision soon, between 3-12 months, you have to make a decision but do have some time.

It sounds to me like your medical team is following standard of care, do some research, ask questions of them, make an informed decision.

A starting point may be to read the NCCN PCa guidelines for PCA – https://www.nccn.org/patients/guidelines/content/PDF/prostate-patient.pdf

Kevin

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Very informative Kevin. Ty. Wouldn’t u always do imrt given its lower gu toxicity rate?

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To change the Subject, I am wondering if anyone has tried the New Vaccine that is now used to prevent certain types of Prostate Cancer.. This from the National Institute of Health.. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3420819/
"The recent FDA approval of Sipuleucel-T (Dendreon, Seattle WA) for the treatment of men with asymptomatic or minimally symptomatic castrate resistant prostate cancer was a landmark in cancer immunotherapy, making this the first cancer “vaccine” approved for use in a treatment setting. This approval has led to renewed interest in cancer vaccines, and to the recognition that prostate cancer represents an immunologically sensitive disease.
At the current time, several vaccine approaches are under clinical investigation. These include viral vectors, antigen-loaded dendritic cells, and DNA vaccines. Each approach has its own set of advantages and disadvantages.
This review will introduce the basic technology underlying these different vaccines, and briefly discuss completed and ongoing clinical trials. As a great number of prostate cancer vaccines have been investigated in both preclinical and clinical settings, we will focus primarily on vaccines that are currently in clinical trials, as ascertained by a recent inquiry of the clinical trials database http://www.clinicaltrials.gov.&#34;

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Hello, my name is Phil. Due to side effects, I recently had to stop using Zytiga to control my metastatic prostate cancer. My PSA number is now 80 and is expected to continue rising. My Oncologist mentioned something called Lutetium which is being used in clinical trials. Has anyone heard of this procedure before; has it been effective. Thank you.

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