Expert consult relevant after therapy?
March 19, 2020 at 1:49 PM #10126CarolParticipant
I was diagnosed in August and had a full hysterectomy three weeks later. The cancer was contained– Stage 1B and supposedly gone but I had to do a chemo sweep and will be doing radiation next.
I am wondering about the value of a medical consult with Dr Birrer after radiation therapy has been completed? I would like to understand what else I can do to help myself after completing radiation. I don’t know if it should be a consult with someone like Dr. Birrer or an overall health progrram (diet, exercise, supplements, herbs, meditation).
March 23, 2020 at 1:17 PM #10129KathyKeymaster
I’m sorry to hear that you have this diagnosis. It’s very good, though, to hear that the cancer was found at an early stage, all removed and that you’ve completed chemotherapy and are scheduled for radiation treatment.
Your question about a second opinion is warranted. We strongly suggest a second opinion to ensure that you are receiving the best care. And as you are doing, it’s so important to self-advocate and be vigilant about your health, especially when diagnosed with gyn carcinosarcoma.
Most importantly, we recommend that all patients be cared for by a gynecologic oncologist who has significant expertise in carcinosarcoma. We have identified a few physicians (in addition to Dr. Birrer and Dr. Arend) who have much experience caring for patients with gyn carcinosarcoma and have included these names on our website. If you don’t find anyone near you, let us know and we can try to help.
It’s difficult for patients to identify the experience of their doctor. Patients who have their diagnosis and care at a health care system affiliated with a university may be more likely to be treated by physicians who see more patients with gyn carcinosarcoma. These oncologists may also have more options for alternate therapies if the cancer is resistant to the standard care or returns (immunotherapy, clinical trials, and so on).
It is also important to be screened at reasonable intervals. The “reasonable” options can vary quite a bit (several months, 6 months, a year) and may vary per patient, depending on the amount of cancer present on first diagnosis, treatment, and so on.
I hope others on the forum will share about seeking a second opinion.
Regarding other ways to improve your recovery and health, I’m hoping others on the forum will share their experiences.
Please keep in touch.
All the best,
Kathy Wilt, Ph.D., R.N
Member, Board of Directors, The GCS Project
July 29, 2020 at 11:02 AM #10179KarenParticipant
Hello Kathy (and Carol) – I was just diagnosed July 1 ironically the day I qualified for medicare. Happy Birthday! I had a radical hysterectomy on 7/16 and although they had anticipated finding a tumor outside of the uterus, the pathology is clear that it was contained within and is Stage 1. I am in Portland Oregon and although I believe my gyn oncology surgeon is very capable, I have developed a short list of referrals for a 2nd opinion before commencing on the recommended chemo and brachy radiation. Since Dr Birrer now has a much bigger job at Univ of Alabama will he really be available for a deep dive look at my records to evaluate alternative options? That is my only hesitation thus I had though Marcella Del Carmen might be more appropriate. I have appreciated this website and am eternally grateful to Diane for making this investment for those of us traveling on this path. Where can I find a list of other options or do you still recommend Dr Birrer as the best? I am specifically looking for alternative therapies since I have not been able to find the statistics to back up a chemo regimen though it seems to be the standard of care. Thanks so much for any help or direction you might be able to provide. Karen
November 19, 2020 at 1:41 PM #10210KarenParticipant
this is Karen in ga. 1yr 6mnths out of treatment for stage 3 carcinosarcoma
my hope is you are doing well I had screening to weeks ago and good this
thing may take me sometime
but not today. That’s how I live .
If you feel like talking
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