My girlfriend was recently diagnosed with VHL when she was also diagnosed with RCC. She has a 3.4 cm malignant tumor in the right kidney and her left is heavily populated with cysts, two of which are malignant but smaller than 3 cm. Based of a review of a grand panel the recommendation by her urolgist is to use cryotherapy to freeze the larger growth in her right kidney, it has not shown signs of spreading at this time. Originally he was against the procedure but after panel review presented it as his option. We understand that this is the least invasive and the plan would be to monitor all of her tumours to develop an idea of the growth patterns. Our concern is that this is a newer treatment and has mixed results. Does anyone have experience with the treatment here? If so, or not any suggestion or information on the treatment?
Thank you for your feedback,
Grady
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cryotherapy, any experience/suggestions?
- By Kertitans
- Posted May 28, 2009 at 10:36 pm · 3 replies
- In Health management issues
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Cancer Surgery Incontinence Prostate cancer Watchful waiting
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- By joyceg98
- Posted May 30, 2009 at 10:46 pm
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I'm not a doctor and I'm not looking at her scans, so this is an entirely theoretical answer, not a medical recommendation. You should double-check with a doctor who is familiar with VHL.
That said, a 3.4 cm tumor is already of a risky size. The normal recommendation would be to remove the tumor and keep the kidney, either with open surgery or possibly with robotic surgery. Better to have a scar than to lose the kidney, and the surgical approach will need to be chosen by the surgeon in order to insure the saving of the kidney.
I don't know where you are going for treatment, but I would suggest you speak with one of the clinical care centers for VHL if you are near one:
http://www.vhl.org/aboutvhlfa/clinics2.php
or call and ask one of the top urology centers if they would please review the scans for a second opinion. In particular I would suggest: Cleveland Clinic, Sloan Kettering, Lahey Clinic, Mass. General Hospital, or M.D. Anderson, or Dr. Bratslavsky at NIH.
Feel free to call me to discuss if you wish.
As you say, Cryo is still considered "experimental" because we don't have good long-term follow-up data on whether or not the tumor completely loses its "metastatic potential". Our experience with RFA is that smaller tumors do very well, but the bigger ones (e.g. 3+) still have some risk of metastasis. Better to get it out of there altogether.
In addition, Cleveland Clinic, which was the leading proponent of cryo, has stopped doing cryo. NIH stopped doing RFA. The reasoning is that in both cases the ice ball or heat radius is necessarily somewhat larger than the tumor, meaning that it creates a bit of "collateral damage" -- cells outside the tumor are also cooked or frozen as the case may be, wounding the surrounding tissues. As they heal, they sometimes stick together in unintended ways. So picture a tumor near the outside of the kidney, well frozen with the cryo probe, but now the kidney heals to the wall of a nearby muscle. That's called an "adhesion" -- the muscle is now stuck to the kidney -- which probably doesn't affect the kidney function, but it might cause a painful "pull" when you move that muscle.
Please see http://www.vhl.org/rfa for a list of Questions to Ask your Doctor about RFA or cryo, to make sure that the doctor and you are comfortable that this tumor qualifies for the procedure, and that nearby structures -- the bowel, blood vessels, the "collection system" of tubes that carry the urine to the bladder -- nont of those are going to be damaged by the procedure.
I hope that helps. Feel free to call or follow up by e-mail. Director@vhl.org, 800-767-4845, ext 4.
Best wishes,
Joyce
- By joyceg98
- Posted May 30, 2009 at 10:49 pm
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I didn't finish the discussion about what NIH is doing instead -- they are now recommending robotic surgery as much more precise, and a laparoscopic procedure, so they can take out the tumor and keep the kidney, and minimize the scarring and adhesions.
Robotic surgery is getting to be much more available these days, mostly because it is hands-down the best alternative for prostate surgery. So centers are buying these million-dollar machines to perform prostate surgeries, and that makes the machine available for other urological procedures as well.
Best wishes,
Joyce
- By currie1910
- Posted October 10, 2009 at 10:56 am
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Joyce et al:
There is NO best alternative for prostate surgery especially robotic surgery---unless you own the equipment or are the person operating the equipment. I guess if you are ultimately going to use surgery, then perhaps the robot is the way to go.
There is also NO silver bullet with respect to prostate cancer. All 10-12 or more possible treatments carry some potential quality of life issues such as ED and incontinence.
Much depends on the male's age and his quality of life prior to treatment. All males that are diagnosed with PCA should educate themselves by reading books---similar blogs---talking to Drs and patients of those Drs.
Guys with PCA(prostate cancer) should consider radiation(internal or external)---surgery---cryo---and others just recently developed. Drs specializing in the treatment you are considering will advise you that their treatment is the only one you should consider even though it could affect your quality of life.
Males with PCA might even consider watchful waiting. I was diagnosed August 2006 and educated myself for next 8 months.
I finally selected cryo as it seemed to be the one treatment that could be repeated(if necessary). I was in the Hospital a few hours and was discharged the same day. Reading blogs etc seemed to indicate there were fewer quality of life issues. I was already having problems with ED pior to the procedure and did not get any worse.
My PSA was as high as 5.5 and is not in the .35 range and I feel fine.
Be your own advocate!!!!!!!!!!!!!!!
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