CancerCompass message board discussion started by Sansan814 on 3/3/2005 http://www.cancercompass.com/message-board/message/all,1662,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have heard that a friend of mine's on has a "rare form of cancer". Only 25 cases have been diagnosed. Do you have any idea what type of cancer this would be? I have never heard of it and I hate to ask. Thanks. Sansan814 Thu, 03 Mar 2005 00:00:00 GMT Hello, My condolonces go out to you right now. I am praying for you and your friend. I am in the medical field, just get back with me and we may be able to track it down with a little more information. God Bless, Wayne M. Lifesaver247 Wed, 09 Mar 2005 00:00:00 GMT Sandra, my wife has recently been diagnosed with an adrenal tumor. We were told at the Mayo Clinic that this is extremely rare (they only see 2 to 3 cases per year). Nationwide the occurence is reported between 30 and 40 cases! As a result of its rarity there are no treatment protocols for this type of cancer. We are being forced into alternative treatment methods and have researched many and finally have decided on two that are compatible and have good testimonials. I pray your friend will achieve a complete recovery. My wife and I are very positive about our future and plan on attacking this condition aggressively. Sincerely, Stan Stancy Sun, 13 Mar 2005 00:00:00 GMT Hi, I was just reading your message, where is the cancer located, could it be a klatskin tumor or cholangiocarcinoma? Jackeline Tue, 19 Apr 2005 00:00:00 GMT  On 3/13/2005 Stancy wrote:Sandra, my wife has recently been diagnosed with an adrenal tumor. We were told at the Mayo Clinic that this is extremely rare (they only see 2 to 3 cases per year). Nationwide the occurence is reported between 30 and 40 cases! As a result of its rarity there are no treatment protocols for this type of cancer. We are being forced into alternative treatment methods and have researched many and finally have decided on two that are compatible and have good testimonials. I pray your friend will achieve a complete recovery. My wife and I are very positive about our future and plan on attacking this condition aggressively. Sincerely, StanDear Stan, Just wondering how you and your wife are doing and if you would be willing to share the types of alternative treatments you and your wife decided on.  I have adrenalcortical cancer, and had surgery, then chemo from a protocal given by the NHI, but handled here in Michigan.  They threw most of the big drugs at me, but nothing seems to be stopping it. I went from one tumor 29cm, (removed surgically) to 3 tumors, to 4 tumors, to now several.  I have possibly a year.  I might be a possible guinea pig for a Phase I that they are doing in Michigan, but I didn't handle the Chemo well, and I know as my son-in-law who also has a rare form of cancer that phase I trials are brutal on the body.  I trying to be positive, but I'm just running out of steam.   Any incite you could share will be helpful.  God bless you both, and I hope everything works out for you. susanlynn      Susanlyn Fri, 01 Jun 2007 00:00:00 GMT Hi Susanlyn, I'm wondering how you are doing now. I have a 2 cm adrenal tumor. Not as large as yours, but did they say what was causing it to grow, and so many?Peace and blessings,-Mynt.  myntie Thu, 13 Mar 2008 00:00:00 GMT  On 3/13/2008 myntie wrote:Hi Susanlyn, I'm wondering how you are doing now. I have a 2 cm adrenal tumor. Not as large as yours, but did they say what was causing it to grow, and so many?Peace and blessings,-Mynt. I was diagnosed 2 1/2 years ago with adrenal cancer.  I had a 3cm tumor on my right adrenal gland.  I had surgery and several months later, a spot was found on my liver. I had a liver resection and now there are nodules on my lungs.  I have had 5 rounds of chemo which seemed to stop any growth.  After taking a couple months off chemo, a CT scan now shows some growth of the tumors and new ones.  I am now starting the anti-adrenal/cancer drug Mitotane.  How are you and what kind of treatment have you had?  KathyCross Tue, 12 Aug 2008 00:00:00 GMT