Uterine Adeno Sarcoma Stage 4

My doctors messed around for over 2 years before I finally had to have an emergency hysterectomy (it took a week of blood transfusions). I was 40 years old. I had had 3 D & C's and was refered to a gyn/oncologist who said my gyn was "over reacting and he was too busy" so this went on for 2 years. Now I have metastatic tumors on the incision site. He orders CT scans in the pelvic region only the tumors are by my belly button and he knows they are there. When he did the surgery he did no lymphectomy or colonectomy when he saw "disease on the sigmoid colon, but had been in surgery too long". The next time he told the story it was because of my weight he left the disease in. He told me they were water cysts now they are hemangiomas. I need some help! I feel like he is just waiting for me to die.

My sister has been diagnosed with Adeno Sarcoma, stage 2 and the doctors are telling her they don't know what to do for her. Have you found any help? The doctors say there are not enough cases for them to know what to do for her. Please let me know if you've found any centers or doctors that can help. thank you Tammygrrl

 

On 1/27/2006 Tammygrrl wrote:

My sister has been diagnosed with Adeno Sarcoma, stage 2 and the doctors are telling her they don't know what to do for her. Have you found any help? The doctors say there are not enough cases for them to know what to do for her. Please let me know if you've found any centers or doctors that can help. thank you Tammygrrl

Hello, just found this website and message board -- I know you posted a long time ago, but I have adeno sarcoma as well, diagnosed back in 2002 -- it is indeed a rare cancer.  I had surgery and then I was referred to the Dana Farber Cancer Institute in Boston, to their Sarcoma Center.  Met with docs there, they prescibed Megace (a hormone).  Did very well until this past summer, a tumor has grown.  I am now in Aromasin (aromatase inhibitor prescribed to  breast cancer patients).  Had an ultrasound today, and the tumor has not shrunk, but it has not grown either!!!  

I hope your sister found help, but if not, check our Dana Farber.

Epiphany 

 

 

On 1/27/2006 Tammygrrl wrote:

My sister has been diagnosed with Adeno Sarcoma, stage 2 and the doctors are telling her they don't know what to do for her. Have you found any help? The doctors say there are not enough cases for them to know what to do for her. Please let me know if you've found any centers or doctors that can help. thank you Tammygrrl

dear tammygirl i was told i had a cervical mass called adenosarcoma i dont know what stage it was as they did not tell me but they made me have a radical hysterectomy and took out lots of my lymph nodes Im sure they can do somethink for your sister they must be telling you lies or somethink please ask them again i also am worried they did this operation to me for no good reason you do not say what country you are from ? Would you travel to a different country to get help for your sister please let me know i hope your sister is alright best wishes polly