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Looking for anyone with Trachea Cancer

Posts: 2
Joined: Dec 2010

I am looking for anyone that may have trachea cancer as I do.. I have had one week of radiation now and wondering what I have in my future as far as treatment, They don't seem to have much info on this type of cancer. Would just like to have someone to communicate with on this subject. Thanks, looking forward to hearing from anyone on this subject..
I am 65 years old, went in for heart trouble, Needed a pace maker and defibrulater , came home and 3 days later started spitting blood, back to hospital, more tests and they found trachea cancer... Double wammy in two week period.. Now taking radiation treatments and just need someone to talk to....thanks, maddy11

Carolinagal's picture
Posts: 91
Joined: May 2010

Maybe try the Head and Neck cancer board

Posts: 1
Joined: Mar 2011

Hello Maddy, I hope you are doing well I imagine you already finished your radiation treatment. I'm not the patient with Trachea Cancer is my mother. But I have done intensive research about it and help my mother with her last two cancers. This is my mother's fourth primary cancer her first cancer was diagnosed in 1969 I was just a baby, her second in 1978, her third in late November 1999 and in March 2009 the Trachea cancer.
It's a very rare type of cancer. She still alive she is going to be 78 (April 16). We started at Sylvester University of Miami Cancer Center. Because there is not to much research on this type of cancer we decided to go to Massachusetts General Hospital they have more experience in this type of cancer. Dr. Douglas Mathisen is a very well known Thoracic Surgeon. The day of the surgery April 24, 2009. Dr. Mathisen came out to talked to us and said that the tumor was large and that surgery was not possible. This was very difficult for us because in all my mother's cancers she has been able to have surgery and this was the fist time she didn't. But maybe it was for the best, my mother could of died in the surgery it is a dangerous and complex surgery. The survival rate for this type of surgery is not high. We met with 3 oncologists in MG Hospital and one of the problems was the conventional radiation treatment because of overlapping. My mother's 3rd cancer, diagnosed on December 1999 (Hypopharyngeal cancer) she had laser surgery and a month later radiation on the neck and part of the chest plus a combo of chemotherapy.

After Boston we decided to go to M.D. Anderson in Houston, TX. It is #1 Cancer Hospital in the U.S. The first Dr. (from the thoracic center at M.D.A.) she basically told us to go back to Miami but that she was going to call a Dr. at the Head and Neck Center at M.D.A. to see if he wanted to see my mother. My mother's oncologist is Merrill Skies at M.D. Anderson after going from Miami to Boston and then Houston and meeting with Doctors in these 3 cities, it was the first time someone told us we can do something about it. Dr. Kies gave us hope. Because of her previous radiation conventional radiation was not considered. They opted for Proton Therapy Radiation. There are only 9 centers in the U.S. that offers this type of Radiation. The odd part is that Mass. General has this type of therapy and they didn't offered us this treatment. They had a lot of people in standby and in 2009 they were given the treatment to patients with brain cancer specially kids.

The radiation oncologist was Dr. Chang (Proton Therapy Radiation) and Dr. Kies my mothers Oncologist at M.D. Anderson. She had 7 weeks of radiation (35 sections) plus a combo of chemotherapy once a week. She finished her treatment on July 2009. Now she has metastasis in the lungs and amazingly she is doing better and probably will finished her treatment in June and if everything is well she will be on remission. Everyone was discouraged first when we learned about the metastasis but we never gave up. My mother is a very special woman, she is a fighter and has never given up. Her family and friends have been with her all the way. She also believes in God and this has help her tremendously. Her last PetScan done on Feb/11 improved tremendously the Doctors are very happy and so are we specially my mom.
I wish you the best.

Posts: 2
Joined: Apr 2015

Hi there, I am not Maddy. My name is Lisa. I just wanted to say thank you for your response for Maddy as it has helped me also. I just completed 38 treatments for tracheal cancer. I had radiation. I am doing a follow up in June or July. I started with thyroid cancer. Hope this is my last battle and for your precious mom as well. Sounds like she has been through so much. God bless you all.

Posts: 2
Joined: Apr 2015

Hi Maddy, I am new to this, just signed up. I was diagnosed with trachea cancer this past december. Started radiation treatments in Jan. 2015. I am on my third week after treatments. I still am having trouble with swallowing and lots of mouth sores. They found my cancer because of a body scan done as follow up for thyroid cancer. Hope we can help each other with this as i know it is a rare cancer. 

Posts: 9
Joined: May 2014

Hi! I've just been diagnosed with tracheal cancer squamous cell carcinoma(yesterday).  Where are you being treated?  My cancer appears to be from a tonsil cancer I had a year and a half ago.  Sounds similar to you only my original sight was the tonsil.  I was treated surgically and with radiation then.  Had a couple of clear pet scans and now it's back.  Hope that you are doing well and if you have any advice where to get treated.

Thank you in advance for any help you can provide.


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