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New tumor

pontiac68
Posts: 8
Joined: Nov 2011

I am new to this site, but looking for info on Kidney tumors. I am a 22 year Pheochromocytoma survivor. An 11mm tumor was seen in my left kidney on the CT scan done at Mayo Clinic on Nov 1. I go to kidney specialist on the 17th. Since my right kidney was removed in Feb of 2005, because of the Pheo, the treatment they are discussing is radiotherapy ablation? I know how it works and why they want to use it. But cannot find any info on long or short term effects on the kidney, or rate of recurrence, etc. Anyone have and info for me? Am really upset about this, the tumor was missed on last years scan, measured 7mm then. And went to Cancer Treatment Center in Zion, Ill in March, and they didn't see it either apparently! Thanks, I have not had good luck with these types of sites getting anyone to answer me or talk to me, some have even told me I could not possibly have this disease for this long!! Also, the docs do not believe the 'new' tumor has anything to do with the present disease.

icemantoo's picture
icemantoo
Posts: 1605
Joined: Jan 2010

Dear Pontiac68,

You are very lucky as far as Kidney Cancer being discovered early, especially when you are down to one kidney already. Most tumors are not discovered until they are several cms. in size. Yours is 1.1cm.
The radiotherapy is a new proceedure to destroy the tumor early and only when it is very small. Most of us on this board have had our full or partial kidney removed because of the RCC and as the reslt of larger tumors. Tumors discovered before they are 2 cm are the exception rather than the rule. You are lucky enough and your tumor was discovered early enough to give you and your doctors more options. They have also developed a cyro (freezing) procedure for these small tumors.

As for recurrance rates those with small tumors under 4 cm have a less than 5 % chance of recurrance after kidney cancer surgery. Hopefully the results on smaller tumers from this new procedure are in that range or lower.

Best wishes,

Icemantoo

pontiac68
Posts: 8
Joined: Nov 2011

Don't feel too lucky these days! Had enough to deal with already. Have had 6 surgeries for the pheo and last year was told no more. It is getting too dangerous because of the placement of the masses. I just get to live with it for now. Radiation and chemo have little to no effect on these types of tumors I already have. Last surgery was in 2005, not only removing most of tumor mass, but right kidney also. Hoping that would stop recurrence, it did not. There are 3 of the little buggers in there, biggest size of a ping pong ball. Anyway, thanks for the comeback. I have my list of ?s started for the docs next week, have a terrific day.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

pontiac68,

I'm sorry you are here, but you have come to the right place, there is a solid group of supportive people here that welcome you with open arms, hearts, and minds. Its not a club anyone wants to join, but we understand why you are here. My tumor was 5.1cm and location dictated complete removal of my left kidney two years ago on the 20th of this month. I have no experience with your specific condition, but it sounds like they are trying to save most of your remaining kidney limiting the need for dialysis post surgery. If they can't save it I understand you can live long term with dialysis, have the docs talked to you about this? I have seen posts from people here that are faced with similar circumstances, perhaps they can provide better information for you. Good luck and keep us posted.

My best to you,

Gary

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Pontiac,

Not sure if you have VHL (maybe MEN?) But the VHL.org website has a link to a community board- pheo's are something they are very familiar with. You may find additional support there. I can find the link if you'd like as I am a member of the community.

Best,
Rae

pontiac68
Posts: 8
Joined: Nov 2011

No neither of those. I have been told my tumors do not fit criteria for either one of those diagnoses. I have visited both that site and the pheo site at NORD. Did not get any feedback either place, sometimes no one answered at all. Thought I would give one more site a try, and here at least someone will talk to me. Thank you!

pontiac68
Posts: 8
Joined: Nov 2011

Ablation procedure is being scheduled for first week of next month. Even though Mayo docs do not believe nor have seen a pheochromocytoma inside a kidney, alot are interested and curious. So they want a biopsy before the ablation. Although it is still very small, it can be seen on the scans for the last couple of years! Not much we can do about that but go forward from here. Gonna go spend some time with the grandkids this weekend. YALL have a Spectacular weekend!!

growler9
Posts: 43
Joined: Oct 2011

Best wishes for your procedure!

If your still looking for info on recurrence chances between ablation and surgical removal I can offer what my Urologist said about my RCC tumor on my right side. 2.5cm. With open partial 5% chance of recurrence. With ablation 30% chance of recurrence. Numbers are just numbers and don't really mean much but I told him I only want to do this once, so I went with open partial.

Your situation would be unique to you and I would think your Urologist could give you some insight.

Happy Thanksgiving! Alan

pontiac68
Posts: 8
Joined: Nov 2011

Thanks for the comeback. I don't pay alot or attention to numbers either. Urologist said 5 yr survival rate was 99% whether I had this procedure or just let it be. I am more proactive than that, so chose to have this ablation done. Partial is not an option at this point, but could be if it recurs. I am sticking with the "ablation is gonna knock this thing out for a ten count" story!! Happy turkey day to you and yours also! And to everyone else here, have a great day.

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