I was diagnosed with Adenoid Cystic Carcinoma stage III of the submandibular salivary gland in September, 2002. Following surgery I received neutron radiation at the University of Washington. I only wish I had found this site sooner, as it would have helped with many of the problems resulting from radiation.

I always wanted to lose about 20 pounds (have lost 35), but this wasn't quite what I had in mind.

To add insult to injury, following radiation I was found to have a stage III tumor in my right breast, followed by a modified radical mastectomy. After what I had already endured, this seemed like a walk in the park, with only some effort required to get my right arm working properly following removal of lymph nodes.

It was recommended that I have follow-up chemotherapy, but I opted not to go for another 6 months of nausea etc. as I was already fairly debilitated from radiation. I truly feel this was the right decision. Only time will tell.

If anyone on this forum has had salivary gland cancer and/or neutron radiation, I would very much like to hear from you. This cancer is apparently quite rare and a smoker's disease (I have never smoked!).

Lily

Hi Lilly, I too was diagnosed with a adeniod cystic carcinoma, but mine is in the tongue base. I also received radio therapy for this, but was told this type of tumor did not react to chemo. Was the chemo for this tumor or the one in the breast?
I was also told by the doctors that this type of cancer is rare, but they also said it has nothing to do with smoking!!! (I was a very light smoker) I wonder if the difference is in the location?
I understand your problems with radio therapy, my worst is that 8 months later I am still not able to eat or drink anything, but I am hopeful that will get better.
I hope all goes well for you.

The chemotherapy was for the breast cancer. My oncologist said there was no chemo available for the ACC.

At nearly 6 months from the end of radiation treatment, eating is still difficult. I live primarily on Smoothees, ice cream and Boost. My taste buds have improved, but things still don't taste right. I also have no saliva, as all the remaining salivary glands were killed by radiation.

At this point I figure I'm a member of the "in crowd." These days it seems everyone carries a water bottle everywhere they go, as I do also.