Just had face to face with dr’s - Advanced Prostate...

Advanced Prostate Cancer

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Just had face to face with dr’s

Kimmilemo profile image
15 Replies

Hello,

It’s taken months between tests, travel back and forth and biopsy done with MRI fusion etc... But they called Friday wanted my husband to fly up to talk face to face and they phone conferenced me in. He has had a recurrence and his prostrate is filled with a lot of cancer. 10 of the 12 biopsy’s showed 7,8,9 Gleason .

First time 10 years ago age 52, he had three months radiation , two years of lupron. This time the oncologist and urologist agree that the only chance for a cure is a selvedge prostatectomy (sp)? Even with high cost of side effects. Talking the end of July. It is at least showing it’s only in the prostrate in reference to all test but of course we know something could be hiding. The surgeon said since he had radical radiation it’s going to be damn hard getting through all the scar tissue. Any experience or knowledge would be helpful. He already had quite a lot of damage from the radiation.

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Kimmilemo
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Tall_Allen profile image
Tall_Allen

Salvage surgery is certainly his worst option - but there are many more. Here is an article discussing much better options with a summary table of them all at the end:

pcnrv.blogspot.com/2017/09/...

(also see the links at the bottom)

My guess is the doctors you spoke to are unfamiliar with those options. You really have to talk to a specialist who has experience in doing them. If you mention your nearest big city, i may know a specialist nearby. But it is worth traveling for to avoid salvage surgery.

Kimmilemo profile image
Kimmilemo in reply to Tall_Allen

They had talked about cryogenics in the beginning. Not sure why that has been taken off the table. I will make sure my husband reads the articles and discuss with his dr’s. Thank you for your time.

Tall_Allen profile image
Tall_Allen in reply to Kimmilemo

Because the recurrence is in multiple sites around the prostate, he will need WHOLE GLAND salvage therapy.

For WHOLE GLAND salvage, the best in clinical trials so far has been for SBRT (by Don Fuller in San Diego) with an 82% cure rate so far and relatively mild side effects. Here's a detailed explanation of his clinical trial:

pcnrv.blogspot.com/2016/08/...

Fortunately, NIH is running a FREE clinical trial of salvage SBRT. I suggest you call or email Theresa Cooley-Zgela, R.N.(240) 760-6207 theresa.cooleyzgela@nih.gov

clinicaltrials.gov/ct2/show...

Whole gland high dose rate brachytherapy has also reported good cure rates with low toxicity (by Joe Hsu at UCSF). He could also get this done at UCLA. If you are near Chicago, I suggest you ask Brian Moran if he would do salvage whole gland low dose rate brachytherapy . I'm not sure if he has experience doing it, but since he is nearby, it is worth a call to find out. As you can see in the chart, WHOLE GLAND cryotherapy has a poor side effect profile (although not as bad as surgery).

In general, salvage radiation (i.e., SBRT and brachyterapy) is more effective and has lower toxicity than salvage ablation (e.g., cryo, IRE, HIFU, etc.).

You should really go with the experts in these therapies. Every salvage therapy carries extra risks compared to primary therapies - he deserves to be treated by an expert.

Kimmilemo profile image
Kimmilemo in reply to Tall_Allen

You are so kind to take your time and give us this information . I will help him dig into it all tomorrow. I think that might be what kind of radiation he has his first time was brackey radiation with a machine called the calypso. We live in Saint Louis but my husband started at CTCA his first diagnoses because he didn’t want surgery so they did the calypso, our daughter lives about 60 miles from San Diego.

Tall_Allen profile image
Tall_Allen in reply to Kimmilemo

Calypso is just an image-tracking system using a radio transponder. it is used to accurately track the position of the prostate during external beam radiation (not brachy). If he had 8-9 weeks of radiation, it was most likely a kind they call IMRT. In St. Louis, Jeff Michalski at Siteman is a very good radiation oncologist. I'm not sure whether Siteman offers any of the salvage radiation therapies I mentioned - as I said, it's a very specialized field.

Kimmilemo profile image
Kimmilemo in reply to Tall_Allen

Talking to my husband now. Did you use one of these treatments?

Tall_Allen profile image
Tall_Allen in reply to Kimmilemo

Yes and No- I had SBRT as a PRIMARY treatment, not a salvage treatment. It has had virtually no lasting side effects for me, other than dry orgasms. But I am fully continent, fully potent, pee better than ever, and my PSA is very low (0.1). The treatments are a snap - I just laid down on a couch five times for 5-10 minutes. (CyberKnife machines take about 45 minutes per treatment - my RO used a faster machine.)

Kimmilemo profile image
Kimmilemo in reply to Tall_Allen

Wish we would have listened to you Tall Allen. My husband had total confidence in his dr’s and went ahead with the salvage prostatectomy. I’m just reading over all my notes now as he lays in bed day after day with kidney pain and back drains and pull-ups. Not sure what they will say on our visit to his dr’s Jan 28th. But haven’t been in the ER last two weeks but he accidentally tripped out of the shower and pulled his on Foley catheter out. He’s going through a lot of pull ups even with the kidney catheters and stents, so I guess we’re on there. Trying to get a appointment at Mayo with Dr. Kwon for second opinion.

Tall_Allen profile image
Tall_Allen in reply to Kimmilemo

I'm sorry to hear it. I hope he recovers fully.

billfenley2 profile image
billfenley2 in reply to Tall_Allen

If Calypso is used on a patient also receiving brachytherapy, is it possible that the Calypso beacons could block some radiation reach of the brachy seeds?

Tall_Allen profile image
Tall_Allen in reply to billfenley2

No, the radio-transmitters (and the titanium shells of the seeds, of course) are transparent to the high power (6 MV) X-rays

Kimmilemo profile image
Kimmilemo

Thank you for your time in answering. They had mentioned cryogenic treatment possibilities as maybe a option earlier not sure why that may have been taken off the table. His oncologist and urologist are at Cancer hospital of America in Zion I’ll.

His oncologist is Dr. Evan Pisick and Alsikafi MD Nejd is the urologist .

Kimmilemo profile image
Kimmilemo

Did you have a salvage surgery?

Chemotherapy not an option as cure? Back in 2003-2004, I went from primary treatment of seeds and external radiation to chemo at 11 months when metastatic. Of course, almost all say that chemotherapy is not a cure. I seem to be the exception. I was able to stop Lupron in early 2010. Find the best with knowledge and experience; as some have written and I am sure that your doctors have explained, the procedure is doable yet tricky. Good luck.

Gourd Dancer

Kimmilemo profile image
Kimmilemo in reply to

Thank you for your response. I think they were speaking maybe too where he is with his cancer at this point. It has not metastasized at this point. I would think Chemo could “cure” and as you pointed out you have had a positive experience. Maybe this is a option they want to use if they end up not getting “it all” down the line.

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