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Second opinion

zsazsa1
Posts: 124
Joined: Oct 2018

I went ahead and had a second opinion yesterday with a medical gyn onc at the other major medical center in town.  Before the visit, she reviewed all my records and also went over my scans with the radiologist at her institution.  She felt that it would be reasonable to do a post treatment CT sacan, and then scans every 6 months for 2 years.  (My own doctor goes with the most recent recommendation, which is that since surveillance scans do not increase overall survival, there is no reason to do them - a totally reasonable approach, but not one that I'm comfortable with.)  She also offered the possibility of treatment with an aromatase inhibitor, since the tumor was estrogen receptor positive, even though there is no data to support it.  Of course there's no data - there aren't enough patients with UPSC/clear cell uterine cancer to do studies easily!  As for my questions about brachytherapy vs external pelvic, vs combination of the two, she said the radiation oncologist is the right person to consult with about that.

Overall, it was reassuring.  I'm going to stay the course with the current oncologist while I finish the six rounds of chemo, but it's nice to know that I have an alternative in town.

Lulu7582's picture
Lulu7582
Posts: 52
Joined: Jun 2018

Nice to have another set of eyes look at your records. All the best with your current oncologist. As I always say...be an advocate for yourself ...ask questions and go with your 'gut' feelings. xo

MAbound
Posts: 646
Joined: Jun 2016

When/if you see a radiation oncologist, ask about a vaginal boost as opposed to brachytherapy as a possibility for your situation. That's what I had and I don't seem to have all the problems with bleeding others who've had brachy have. It's done externally after pelvic radiation and I guess it causes less problems than the radioactive dildo does. It was a compromise between my gyn onc not wanting me to have any vaginal radiation at all and the radiation onc feeling I needed something because my cancer grew down into my cervix and I had a positvie lymph node on each side. He talked about a dialator for me, but never gave me one and I've been getting through pelvic exams ok. Sex is a no-go though.

zsazsa1
Posts: 124
Joined: Oct 2018

As of about two weeks ago, about 4 months postop, I was told that I was healed..... barely.  Still very thin and friable tissue.  I'm really afraid that if we do brachytherapy there that I'll have a lot of trouble.  But of course external beam means more damage to surrounding tissues.  And because I had isolated tumor cells in a sentinel node, I'm afraid that if they don't do external beam to the pelvis, I'm more likely to have a recurrence.  What I think I'd really like to do is some external beam and some brachytherapy.  And it would really be nice to be able to have sex again.  I wouldn't care for just me - but I'm married to a really great man, and I'd like to be able to for his sake.

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