One patient with glioblastoma still alive nine years later
by gaylee111 on Tue Sep 23, 2008 12:00 AM
by lynnie6 on Sat Dec 06, 2008 12:00 AM
On 9/23/2008 gaylee111 wrote:I just found out I have thymoma cancer. I had colon cancer 6 months ago and I beat that. MY dr. says that thymoma cancer has nothing to do with colon cancer. I have stage 3 and will be starting radation soon. and maybe chemo with it. I am so scared of that. I didnt realize that it usually comes back within a few years. I was told by my dr. it is curable. After reading all the messages I guess I am wrong. Anyone out there had thymoma and didnt come back??
I HAD IT SINCE 1994 AND IT'S STILL HERE. TAKE HOPE IN GOD.
ALWAYS LOOKING UP
by kbroder on Wed Mar 10, 2010 07:15 AM
hi, I also was diagnosed in 2004 with thynoma cancer, stage 4, I have had several chemo. radiation plus surgery, I too am young 45 when i WAS diagnosed, I have 7 tumors that the drs in Calgary are keeping somewhat stable, I know its very hard on the family, and somedays I wished it would go away, I don't know what the life span is with this, but I have been fighting for 6 yrs with this, and don;t know of anyone who has this cancer, so it would be nice to hear from someone, I am located in Lethbridge, ab, and we have wonderful drs at the tom baker in Calgary, ab, looking forward to hearing from you.
by dorne on Tue Aug 24, 2010 05:56 AM
I have been searching for a site that I could share information and get information! on Thymoma and thymic carcinoma ( probably spelled that wrong) This is such a rare cancer most of the sites ,including this one, have such old information.I am 53 was diagnosed july of 09. as rare as Thymoma is only 1% of them have Thyminc Carcinoma. I have been very lucky lol and have the Carcinoma. Which means as opposed to very slow moving mine is VERY aggressive. stage 4 weeks to months to live BUT here I am a year later. Please contact me so we can share more information and compare notes I have done a lot of research on my own as most Drs. don't even know what it is !!! and it gets very confusing I am getting treated at the Mayo clinic in Minnesota and at the Cancer Treatments centers of America in Chicago. maybe we can get more people drawn in to this discussion
by lw1979 on Wed Oct 20, 2010 03:09 PM
I have just undergone robotic surgery for a thymoma. I have been told I have a Stage B1 thymoma but know little else. I was not even sure it was considered cancer untill today when I contacted the Cancer Institute. I hate that my doctor never really said thymomas are cancer, I was lead to believe everything would be ok after surgery and now I find out I have to have radiation treatment. When I read that it could come back from this site I am scared to death. No one told me it would be this bad.
by lw1979 on Wed Oct 20, 2010 03:10 PM
by premieratm on Mon Jan 31, 2011 03:32 AM
Please email me if your husband is still fighting his Thymona Cancer.
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by premieratm on Mon Jan 31, 2011 03:34 AM
Please email me if you are fight thymona Cancer.
by meli63 on Thu Feb 03, 2011 05:02 AM
I will tell you what I know. At the time of your posting, I had only learned the term thymoma two weeks before....
My thymoma was discovered in October 4, 2010 and removed December 10, 2010. It was a Stage 1 Type AB. Because it had the B component, I was referred to an oncologist by my surgeon. The type is classified using the World Health Organization (WHO) definitions. There is a lot of easy to understand available on line about this classification. Essentially, it indicates what cell types are in the thymoma. In my case, my oncologist didn't think that radiation was warranted. It may be different for your case because it was classified as a B.
All along, my surgeon told me that there was always a chance that radiation might be needed. He couldn't be certain until the staging and cell typing were done by a pathologist after the thymoma was removed. However, he always encouraged me that my prognosis was good since my tumor was small and likely at a point where it had not spread much, if at all (stage 1 or 2). Even if I did have to have radiation, my chances of disease-free survival were still excellent (95-98% according to some of the references I've read).
Yes, thymoma is a form of cancer. As with any cancer, it could come back, though not in the thymus since it has been removed, but in the lining of the heart or lung. Fortunately, the chances of that are slim. Also this type of cancer grows slowly and responds well to therapies (chemo or radiation which ever is needed at the time).
I've resigned myself to the fact that I may have to face this again, but my chances of survival, even if it comes back, are so much better than many of the other cancer types we hear about.
Hope this calms some of your worries.
by meli63 on Thu Feb 03, 2011 05:28 AM
oops, that is 95-98% chance of not getting a recurrence in the next 10-15 years. That is according to a study published in 2010 that had 35-year follow-up of thymoma patients from throughout Italy.
I have to admit, there isn't much information available and I did a lot of research on my own. I was scared when I first found and the only way I'v gotten through thus far is not just with information but with a lot of prayers and help from my family and friends. Hope you have that too...
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