Erin has a Benign Desmoid Tumor – Mon. Nov. 14, 2016

We were able to move Erin’s appointment with Dr. Lee Morse, the musculoskeletal specialist at Kaiser in Oakland, up to 11:30 am today. Dr. Morse says that the mass on the back of her neck is a benign desmoid tumor, or fibromatosis. It is not a cancer, and it is not related to the glioblastoma. He said desmoid tumors are tough. It used to be that they removed all of the desmoid tumors by surgery, and they have to remove a good margin around the tumor. But, Dr. Morse said that there is about a 50% recurrence, and then you have to go back in through scar tissue when operating again.

There has been some success with using a drug called Gleevec which is used in breast cancer treatment. (I looked it up and it is only about 37% successful.) He is going to contact an oncologist in Roseville here to work with Erin on the Gleevec.

The other option is radiation, but he said that 20 years down the road that can actually cause cancer. I think that the radiation on Erin’s brain tumor was what actually cause the paralysis of her right side, because the paralysis didn’t occur until 2 years after the radiation, and in retrospect there had been no recurrence of the glioblastoma.

The MRI which was done here on Oct. 26th revealed an “avidly enhancing mass” which was 60 mm x 25.7 mm or about 2 1/2 inches by 1 inch. I actually measured it quite a bit larger than that, being bigger on the outside than on the inside. And it is very hard and solid. The Medical Assistant asked Erin what her pain was on a scale of 0 to 10, and Erin said 4. Sometimes it throbs, but most of the time it doesn’t.

We took Hwy 80 and Hwy 580 to Oakland and got there in an hour and a half. Traffic the other way at 10 am was a standstill along the Bay Shore with lots of big trucks. Going home we took Hwy 24 through the Caldecott Tunnel, and other than a brief congestion near Davis, we sailed home, again in an hour and a half.

Last night Erin wanted me to make a batch of brownies from a Ghirardelli mix, but it calls for an egg, and we were out of eggs. After a day of driving today, Clark went out and did some grocery shopping including eggs, so I made a brownie batch tonight. Erin is shown eating one.


2 thoughts on “Erin has a Benign Desmoid Tumor – Mon. Nov. 14, 2016

  1. Barbara Chase November 14, 2016 at 22:08 Reply

    Sorry to hear about this new tumor. But Gleevec(Sp?) seems worth trying. You have become quite a medical expert. She looks good in the picture.

  2. bcwgolf November 14, 2016 at 22:46 Reply

    Barb, you must live on your computer! You are always the first one to comment. Maybe you just keep the same computer hours that I do.


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