Uterine Leiomyosarcoma second opinion needed

@apple321 I’d like to welcome you to Mayo Clinic Connect and to this support group. Uterine cancer is something none of us ever thought we would hear and yet here we are. This is a wonderful group of women who will provide you with emotional support and suggestions.

I can understand why you would like another opinion. If I were in your position and my oncologist advised no additional treatment at this time I would be worried too. I was diagnosed with endometrial cancer in 2019, recurrence in 2021. In 2019 I had a hysterectomy with ovaries, fallopian tubes and cervix all removed too. I’ve been conscientious about going to each cancer surveillance appointment which was how the recurrence was found in 2021. I had external beam radiation therapy and brachytherapy. I’m headed back to Mayo Clinic this week for my next cancer surveillance appointment. My appointments include CT scans and physical exam (pelvic exam with speculum).

Are you located in the U.S.? If so, are you currently getting your cancer care at a comprehensive cancer center? This is a clinic, often located located within an academic medical center, where there is both medical care and research and the providers work in a collaborative manner. Mayo Clinic is part of this network.

You can ask your primary care provider for a referral to Mayo Clinic or you can refer yourself. Here is the link that will give you can request an appointment:

Mayo Clinic Appointment Request:

— http://mayocl.in/1mtmR63

If you’d like a second opinion at a National Cancer Institute Designated Cancer Center then here is the link. These are listed by state.

—. https://www.cancer.gov/research/infrastructure/cancer-centers/find

How are you feeling this evening? Do you have fatigue or pain from the hysterectomy?

@naturegirl5
Thank you very much for your information and warm welcoming. I feel hopeless while searching the LMS cancer information online, lucky that I have found this page and support group. I will make sure the appointment with my oncologist will include the CT scan and physical exam with speculum. However, I'm not quite sure if she is willing to do it or not. I will try advocate myself. Thank you for your advises.
Good luck to your exam this week.

I'm in Duke University Hospital Cancer Center at Durham, North Carolina. I might seek a second opinion with other oncologists on my pathology report and treatments.

Best Regards.

@apple321 Thank you for the update. Your care at Duke University Hospital Cancer Center is with one of the NCI-Designated Cancer Centers which means you have many experts in oncology who can collaborate with one another in your care. Here is a question you can ask your oncologist. Cancer Centers have Tumor Boards that meet on a regular basis (usually weekly but could be more often) and is made up physicians and providers in oncology, pathology, and other specialities. They meet to discuss "cases" that need additional discussion and collaboration. (My partner is a retired pathologist and regularly attended the Tumor Board at our local hospital which is how I know about these meetings and what they do). Would you like to ask your oncologist if your case was presented at Tumor Board and if so what the recommendations were? While you, as the patient, are not present or part of the discussion, you can greatly benefit from all the great minds at Duke weighing in on your diagnosis and treatment.

I mentioned physical exam with the use of a speculum because I've learned here on Connect that some women who return for cancer surveillance appointments on follow-up are not examined with a speculum. The use of a speculum was always a part of my routine gynecological exams over many years so I'm used to that. My nurse practitioner has been doing just that with my cancer surveillance follow-ups to examine all tissue inside and outside. I'm amazed that any physician would rely solely on CT scans or a quick physical exam without a good and long look with their eyes.

I'm returning to my original thoughts on Tumor Board. Do you have access to a patient portal where you can ask your oncologist that question? When is your next appointment so you can discuss this?

Helen praying all goes well with your dr visit this week 🙏🏼

@angierivas1 Thank you so much. Your prayers are so very appreciated.

@naturegirl5
Thank you for your amazing suggestion. My next appointment is Sept 11 Monday, I will ask my oncologist about the Tumor Board. Looking forward to hear from your good news on your next appointment. God Bless.

@apple321 I’m glad my suggestion was helpful to you. I forgot to ask you earlier but do you know the Grade of the uterine Leiomyosarcoma diagnosis? It’s graded 1-4. Whether or not more treatment is recommended is dependent on the grade with 1 being the lowest number (most like normal cells) and 4 is the highest meaning the cancer has spread to other places.

Uterine Sarcoma (emphasis on staging for uterine leiomyosarcoma) from the American Cancer Society:

— https://www.cancer.org/cancer/types/uterine-sarcoma/detection-diagnosis-staging/staging.html

I finished my cancer surveillance appointment a little while ago and there is no evidence of disease - nothing new. So I return in 4 months.

@angierivas1 Thank you for your prayers as they were answered. My exam today showed no evidence of disease.

Helen, I’m so happy to hear this excellent news! Praise be to God. Please celebrate and enjoy life knowing that your exam shows no evidence of disease 🎉

@naturegirl5
Hooray, I'm very happy for you for your good news. May I ask why is in 4 months , not in 3 months for follow up check up next time? Did the doctor do CT scan with your lung or whole body in the check up ?
My uterine LMS is in stage 1B, because it's huge, 11cm.