Prostate Cancer: The waiting to get going on treatment is killing me

Posted by Bob Butler @robertjohn, Apr 8, 2015

I just received the diagnosis of prostate cancer from my urologist on March 25. PSA 4 months ago was 5 and gland felt normal. Then a month ago PSA jumped to 14 and they found a bump during the DRE. Then the biopsy. High Gleason score of 10 indicating aggressive at that spot. I have been checked yearly and at 6 month intervals for 7 years. I sit here 14 days later and still have not had a face to face with the Dr. He is on vacation. I am thinking of just heading to Mayo and get this process rolling. Shouldn't I have had more concern here from my docs to get moving? Or am I impatient? I feel the waiting is killing me and my family. The bone scan is done as well as the CT scan. Bone scan is good, CT shows slightly enlarged lymph nodes in the pelvic area. Could be just swollen. Insurance company denied a further PET scan and now I am waiting again. What an ordeal to deal with and no one seems to be as concerned as me. Any thoughts.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

does marijuana really do any thing for prostate cancer?

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@morris

does marijuana really do any thing for prostate cancer?

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Welcome @morris.
I moved your message to the Prostate Cancer thread so that you can connect with @BuckyFestoon @giddyup1 and others.

It appears that there is a lack of clinical evidence on whether marijuana (cannabis) can help treat prostate cancer. See this review that describes in detail the effects, characteristics, and possible role of cannabis and cannabinoids in the subject of prostate cancer. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3339795/

According to the National Cancer Institute, cannabis may have some effect treating cancer-related symptoms caused by cancer or its treatments http://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq

You may also find this article interesting to read, titled "Don’t count on marijuana to treat prostate cancer" http://healthydebate.ca/personal-health-navigator/can-marijuana-cure-prostate-cancer

Morris, what treatments are you currently taking?

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@morris

does marijuana really do any thing for prostate cancer?

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Not aware of any impact on PCa other than palliative but, like everything else, knowledge is evolving.

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I just joined Connect not too long ago and just saw this. Did you ever get a follow up? By all means you should head to Mayo or some other center of excellence for a Gleason 10.

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Very insensitive behavior of your current doctor ! Go to another hospital and get the care you need NOW !
The clock is ticking. Good Luck. John

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Do MRI and start treatment right away. CT and bone scans are not sensitive enough to help determine what kind of treatment. PSMA Pet is best but if you cannot get it at least MRI gives you a better idea. Hope that helps.

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Wow you should not be facing this and having to wait for a doctor to come back. We all know the mental strain you are having. Heck it is hard enough just waiting for test results to come back much less a doctor on vacation.

When a doctor goes on vacation should have a back up to deal with patients care. I think your Gleason Score is way to high to wait or have to wait.

I am not sure how far from a Mayo Clinic you live from but you won't have to wait for a returning doctor from vacation. Most major providers medical billing can also challenge the denial of another PET scan if medically necessary so is worth trying.

If you don't live close to a Mayo Clinic or don't want to travel check out other major institutions. Mayo Clinic does have traveling plans and assistance if you are traveling long distances to get there. I read outstanding things about John Hopkins, UFPTI, Cleveland Clinic, etc. I know I am partial to Mayo Clinic as have been a patient there since 2006. But even though I had all my tests and biopsies done at Mayo Clinic my proton radiation treatment were done at UFPTI.

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@hamhock

My prostate cancer has reoccurred after having seed implants as indicated by a rising PSA. I am now on Lupron which initially took the PSA down to below 1.0. It's climbed back up to 3.15 and is increasing about .50 every six weeks. No metastasis so for. Anyone with Lupron depot experience? Also my doctor is considering putting me on either enzalutamide or abiraterone.

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Hello, Ellis-I’ve been on Lupron Depot for close to 10 years now, injection every 6 months. When I asked at first how long I’d have to take it, the answer was “The rest of your life.” Ok, well, how long is that? They wouldn’t answer. Side effects: said goodbye to my love life.
PSA was around 300; Gleason 9.
Since then, external beam radiation and Abiraterone, knocked the PSA down to less than 1, then went up again. Not much side effects. Chemotherapy with Docetaxel, didn’t do much except made me really sick. 7 treatments. Spot radiation to ribs for some mets.
The latest has been the full course of Pluvicto, 6 treatments. Minimal side effects. Dry mouth was about it.
The Pluvicto was more to just try to slow it down - incurable at this point.
I can’t seem to find out what comes next. Maybe Pluvicto was the last and best shot at it.
Next will be full body bone scan and PET scan to find out how much is left and where.
Considering my original PSA score 10 years ago, and the Gleason 9, I think I’ve done fairly well. Now being treated by Palliative Care. The last will be hospice at home, which my dear wife and I discussed thoroughly.
And that, dear friend, has been my journey. It certainly has been an interesting one!

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@andrejacques

Hello, Ellis-I’ve been on Lupron Depot for close to 10 years now, injection every 6 months. When I asked at first how long I’d have to take it, the answer was “The rest of your life.” Ok, well, how long is that? They wouldn’t answer. Side effects: said goodbye to my love life.
PSA was around 300; Gleason 9.
Since then, external beam radiation and Abiraterone, knocked the PSA down to less than 1, then went up again. Not much side effects. Chemotherapy with Docetaxel, didn’t do much except made me really sick. 7 treatments. Spot radiation to ribs for some mets.
The latest has been the full course of Pluvicto, 6 treatments. Minimal side effects. Dry mouth was about it.
The Pluvicto was more to just try to slow it down - incurable at this point.
I can’t seem to find out what comes next. Maybe Pluvicto was the last and best shot at it.
Next will be full body bone scan and PET scan to find out how much is left and where.
Considering my original PSA score 10 years ago, and the Gleason 9, I think I’ve done fairly well. Now being treated by Palliative Care. The last will be hospice at home, which my dear wife and I discussed thoroughly.
And that, dear friend, has been my journey. It certainly has been an interesting one!

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How old are you now? I am 79 and had radiation 2017, clear till 2020 mets to L2 lumbar which radiated 1 inc out back on Xolodx then in 23 its back in L1 as 1 inch and small in T 10 T 11 so put me on Xtandi and Xgeva no radiation as too close to L1
Psa dropped from 9.8 to 1,7 then 2.3 then 3 now What's next? Or am I god for 5 yrs I feel great

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@andrejacques

Hello, Ellis-I’ve been on Lupron Depot for close to 10 years now, injection every 6 months. When I asked at first how long I’d have to take it, the answer was “The rest of your life.” Ok, well, how long is that? They wouldn’t answer. Side effects: said goodbye to my love life.
PSA was around 300; Gleason 9.
Since then, external beam radiation and Abiraterone, knocked the PSA down to less than 1, then went up again. Not much side effects. Chemotherapy with Docetaxel, didn’t do much except made me really sick. 7 treatments. Spot radiation to ribs for some mets.
The latest has been the full course of Pluvicto, 6 treatments. Minimal side effects. Dry mouth was about it.
The Pluvicto was more to just try to slow it down - incurable at this point.
I can’t seem to find out what comes next. Maybe Pluvicto was the last and best shot at it.
Next will be full body bone scan and PET scan to find out how much is left and where.
Considering my original PSA score 10 years ago, and the Gleason 9, I think I’ve done fairly well. Now being treated by Palliative Care. The last will be hospice at home, which my dear wife and I discussed thoroughly.
And that, dear friend, has been my journey. It certainly has been an interesting one!

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I am sending good thoughts to you and feel bad you had to go through this I am newly diagnosed and deciding between surgery and radiation i am a 4+4 am in buffalo ny and not confident they are the best here went to cleveland clinic saw surgeon not radiologist he ofcourse recommended surgery but i just dont no what to do i am scared to no end anyway adivce would be nice but before that once again I am wishing you happiness and a good run you sound like a wonderful confident strong person so I think you know what your doing bless you and your family life is tough

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