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Surveillance after NED

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Hello. My mother was diagnosed with 1A mmmt last year, completed 6 rounds carbo/taxol + 3 brachytherapy. She had a clear scan in January. I’m concerned about her follow up plan as her ob Gyn oncologist said no scan for surveillance unless there are symptoms. She also said no to tumor profiling unless there’s a recurrence. But shouldn’t we do the tumor profiling now, so if there is a reoccurrence we could start treatment immediately instead of waiting for results? I’ve read some doctors sent tumor samples to Helomics, but no one suggested that to us. Just wanted to see if anyone had experience with trying to convince their doctors to order certain tests. I would also like for her to order an MRI instead of CT scan, to avoid radiation... but if she doesn’t want to order the CT scan, how will I convince her to order the MRI? I want to do everything possible but it seems to be hard to convince the doctors we have to do what we would like...

Posted : 07/03/2019 1:18 pm
Posts: 42
Eminent Member

Hi Katherine,
I would suggest that you make an appointment for your mom for a second opinion with another gyn oncologist who has experience with this rare cancer. It's hard to question a physician's treatment plan, but sometimes you have to. It's also important to have a medical team that you are comfortable talking with.

It's good that your mother was diagnosed early, but this cancer is aggressive, and you have to keep on top of it. I will pass on your question about surveillance to one of our experts.

My best to your mother.

Posted : 12/03/2019 4:29 pm
Posts: 24
Eminent Member

I just saw on FB today that you can get video consultation with Dr Birrer at UAB! Please check it out!

Posted : 15/03/2019 1:44 am
Posts: 65
Trusted Member


I, too, recommend seeking another opinion. Dr. Birrer was a great encouragement to me, so try for that video conference if you live too far away to visit him.

I, too, was diagnosed at stage 1A. I went through the chemo, too. My doctor had me get scans every three months for the first six months. He was going to stretch it to six months at that point, but I wanted to continue at three months. I went through the first year getting scans every three months because I wanted to catch that cancer early if it reoccurred! I did those scans for a peace of mind! I had CT scans done all that time. I consulted with my doctor and the people doing the CT scans. They said the scans were spread out enough not to cause problems. Having them every three months was not required by the doctor, but it surely gave me the peace of mind I needed.

Please keep us posted!


Posted : 15/03/2019 2:25 am
Posts: 42
Eminent Member

Hi Katherine,

I heard back from one of our consultants who noted that the different options you mentioned are considered to be within the standard of care and are considered reasonable: 1) regular scans or waiting to scan when symptoms occur; 2) having tumor profiling (Next Generation Sequencing) done upfront or at the time of recurrence. As I mentioned earlier - and as Ann and Lisa wrote above - I think it is important to get a second opinion from an experienced physician when dealing with carcinosarcoma because of its rarity and aggressive nature. The physician you see for the second opinion may concur with the original treatment plan (and give you peace of mind) or provide a different treatment plan. But it's good to have this discussion.

Let us know how things go.

Posted : 21/03/2019 7:21 am
Posts: 21
Eminent Member

Dear Katherine how is your mum doing? Did she decided how often to make controles? Who did she bear thw brachytherapy? Greetings from Switzerland Margret

Posted : 13/06/2019 10:16 am

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