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?

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

REPLY
@dandl48

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

Jump to this post

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.

Liked by dandl48

REPLY
@colleenyoung

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.

Jump to this post

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.

Liked by dandl48

REPLY
@colleenyoung

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.

Jump to this post

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

REPLY
@carlsonte

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.

Jump to this post

@carlsonte Best of luck to you!

Liked by dandl48

REPLY
@colleenyoung

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.

Jump to this post

Pirad 4

REPLY
@dandl48

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

Jump to this post

Well, made the appointment and surprise, non of the 16 biopsy's came back as cancer. With all the signs pointing to cancer I'm happy but in the back of my mind I'm fearing that the MD missed sampling the lesion. All 16 showed HGPIN and now the waiting game starts all over with another MRI in May and the Fusion Guided Biopsy scheduled for early June.

REPLY

Hi David, very glad to hear that your biopsy came back negative, but it sounds like you are waiting for the other shoe to drop sometime in the future. In the last 9 years, I've had two different cancers. So, I've been looking into why I've been getting cancer to see if I can do something to prevent the next one. It seems sometimes that our bodies are like time bombs waiting to go off. My cancers are "not related", but what I'm beginning to realize is that all cancers are formed in pretty much the same way, damage to the DNA in our cells. I read a book recently by David Sinclair on aging called Lifespan. He talks about what happens to our cells as we age and there is a direct correlation to the formation of cancers. Consequently, as we age we are more likely to get cancer. He
discusses what we can do to make our cells healthier and subsequently less likely to be cancerous. He has a website at http://www.lifespanbook.com, if you want to see what he has to say.
I've discussed with my GP some of what he identifies as remedies for aging cells, and he concurred that recent research backs what he has to say. The two my GP supported was intermittent fasting and intense exercise for short periods of time (spurts of 20 to 90 seconds of intense exercise). Sinclair talks about some supplements but I'm not ready to try them yet until I know more. However, Resveratrol, found in red wine, is one of the supplements. So a glass or two of a good pinot or merlot might help keep you younger. Actually, the Linus Pauling Institute at Oregon State U has information on how Resveratrol helps prevent cancer at the cellular level.
So, I've decided I can wait until the next shoe drops or try to do somethings that might prevent it from happening. You might try it.

Liked by dandl48

REPLY
@waynen

Hi David, very glad to hear that your biopsy came back negative, but it sounds like you are waiting for the other shoe to drop sometime in the future. In the last 9 years, I've had two different cancers. So, I've been looking into why I've been getting cancer to see if I can do something to prevent the next one. It seems sometimes that our bodies are like time bombs waiting to go off. My cancers are "not related", but what I'm beginning to realize is that all cancers are formed in pretty much the same way, damage to the DNA in our cells. I read a book recently by David Sinclair on aging called Lifespan. He talks about what happens to our cells as we age and there is a direct correlation to the formation of cancers. Consequently, as we age we are more likely to get cancer. He
discusses what we can do to make our cells healthier and subsequently less likely to be cancerous. He has a website at http://www.lifespanbook.com, if you want to see what he has to say.
I've discussed with my GP some of what he identifies as remedies for aging cells, and he concurred that recent research backs what he has to say. The two my GP supported was intermittent fasting and intense exercise for short periods of time (spurts of 20 to 90 seconds of intense exercise). Sinclair talks about some supplements but I'm not ready to try them yet until I know more. However, Resveratrol, found in red wine, is one of the supplements. So a glass or two of a good pinot or merlot might help keep you younger. Actually, the Linus Pauling Institute at Oregon State U has information on how Resveratrol helps prevent cancer at the cellular level.
So, I've decided I can wait until the next shoe drops or try to do somethings that might prevent it from happening. You might try it.

Jump to this post

@ waynen Thanks for the detailed post. I will look into Sinclair's site & Book, sounds interesting. Good luck to you!

REPLY
@waynen

Mike, your experience is similar to mine. My primary care physician caught the steady increase in my PSA count and referred me to my Urologist. By the time of my biopsy, it jumped a point. After I was diagnosed with cancer, it jumped again, going from 3.8 to 6.1 in 4 months. My Gleason also was 8.

The toughest thing after the diagnosis was what to do. My Urologist gave me a book with all the options. After reading the book, he asked me what I wanted to do. Totally confused, I sought out people who had been treated and decided to stay away from surgery and look into Proton Beam Therapy. Fortunately, like you, I eventually contacted Mayo Clinic in Phoenix. Mayo was very professional and gave me the best information on what to expect. They confirmed my diagnosis and then put me through a bone scan and hour and half MRI to be sure that the cancer was contained in the prostate, which it was. Since my cancer was more advanced, they put me on hormone therapy to slow down its progression. It also made the cancer cells less active and shrunk the prostate, making it easier to radiate. The research indicates that I had a 20 per cent greater success of survival with the combination of radiation and hormone therapy then just the radiation. We then waited two months before treatment started. I also had 20 treatments and finished at the end of January. Just had my check up and PSA was negligible.

I won't tell you that it was a piece of cake. The hormone therapy has some side effects like no libido, tiredness, muscle loss, weight gain, and moodiness. However, I was able to be active throughout the whole process, and would do it again.

Through the process, I met a number of people receiving Proton Beam Therapy. Their story was similar to mine. Mostly, they found out about the therapy on their own, and some were discouraged from having the therapy. Many traveled a great distance to get the therapy. Fortunately, Mayo has rent free facilities available.

Jump to this post

Thanks for infor, i may post after my treatment is finished

REPLY
@mwspro

Thanks for infor, i may post after my treatment is finished

Jump to this post

Thanks for your reply, I have had 6 proton treatment now. Having some fatigue and a weaker urine stream. Did you have any side effects ?

REPLY
@mwspro

Thanks for infor, i may post after my treatment is finished

Jump to this post

Thanks for your reply, I have had 6 proton treatment now. Having some fatigue and a weaker urine stream. Did you have any side effects from
Proton ?

REPLY

Hi, today will be my last treatment ( I get to ring the bell ). I had 20 treatments of Proton, Pencil Beam and the SE’s were minimal to start but by the 19th treatment I began having a hard time urinating. I could urinate but I would have pain on my left side. Also, the fatigue set in and yesterday all I could do is lay around. I am a college football fan and could not watch one game yesterday and went to bed at 7:00 PM and woke up at 8:00 AM. Forcing myself to go to the last treatment. I have heard it takes 6 months to get over the SE’s. Now this is just my experience and we (Pca) people are all different so keep asking questions. Good luck on your journey.

REPLY

Hello Colleen I was curious on information that you might be able to give me and or anyone in this group that has done the proton therapy approach for prostate cancer
Having my second biopsy the end of this month there were two lesions in the both lower lobes but they haven’t done a fied I’m wishing to save my use of my prostate without fully radiation or surgery to remove it this is why am looking in this direction has anyone done this and could you tell meIf in fact the function of the prostate continues normally thank you very much

REPLY
@marko1

Hello Colleen I was curious on information that you might be able to give me and or anyone in this group that has done the proton therapy approach for prostate cancer
Having my second biopsy the end of this month there were two lesions in the both lower lobes but they haven’t done a fied I’m wishing to save my use of my prostate without fully radiation or surgery to remove it this is why am looking in this direction has anyone done this and could you tell meIf in fact the function of the prostate continues normally thank you very much

Jump to this post

Hi @marko1, I believe that @ronan2011 @waynen @fairway5 @alphanumeric and @6608 all chose proton beam therapy for prostate cancer treatment. I hope they can answer some of your questions and share their experiences with you.

REPLY
Please login or register to post a reply.