Diagnosed with sarcoma? Let's share

Hello,

I was diagnosed with high grade uterine sarcoma "NOS" in 2009. Had surgery, AIM chemo and radiation at local Illinois hospitals. Was screened for 8 years by my local oncologist, who then said I no longer needed screening as I had no recurrence. Now receive yearly screening at Mayo, a recognized sarcoma center, as sarcoma can reappear years after treatment. Mayo also refined my initial diagnosis to high grade undifferentiated uterine sarcoma. Blessed with good health for the previous 9 years, but now experiencing some apparent late effects of treatment.

Hi and thank you for the introductions! I feel like I'm in uncharted waters with a variety of physical issues popping up after 9 years of no problems. GI problems may be due to pelvic adhesions, pelvic floor problems and radiation. Thorough work up at Mayo. Vision problems next with Mayo diagnosing unexplained skew deviation, though some question of thiamine deficiency due to malabsorption. Now fatigue and peripheral neuropathy.

Hi everyone. Initially diagnosed with uterine sarcoma NOS in 2009. Surgery, AIM, radiation at local hospitals in Illinois. Started seeing Dr. Okuno at Mayo when my local oncologist said I no longer needed to be followed. Mayo diagnosed me with high grade undifferentiated uterine sarcoma. 9 years NED. Now yearly scans chest and abdomen.

Hello @sarcomasurvivor,

I'm so glad you've joined Connect - welcome!
I’d like to introduce you to @123cheryl @cvandyke @diane060 @kate123 @mdotsie @dezi @skunklady13 who have discussed uterine and endometrial cancer/sarcoma. While it would appear that your diagnoses differ, I thought you’d like to meet each other.

Although this discussion about uterine sarcoma took place a while ago, https://connect.mayoclinic.org/discussion/uterine-sarcoma/, I do hope @kathy555 @judithvt @dmas will return to join in share their insights.

@sarcomasurvivor, are you presently experiencing late side effects of the chemo and radiation?

Hi everyone. I am NED 9 years after diagnosis of high grade undifferentiated uterine sarcoma. Surgery in 2009 by gyn/once in Barrington, IL. AIM chemo and radiation at Lutheran General, Park Ridge, IL. Oncologist wanted to stop screening after 8 years. Knew that sarcoma could come back after that. Now screened yearly at Mayo. Interested in connecting with anyone experiencing late effects of chemo/radiation.

I have a sarcoma of the blood vessel linings in my liver called epithelioid hemangeoendothelioma—EHE, for short. Diagnosed in 2008; 2 surgeries plus an arterial-delivered chemo therapy since then. Always have been asymptomatic. Doctors also monitoring my lungs, as it’s common to metastisize there too. So far, no sarcoma definitively diagnosed in my lungs.

@disneyrn, I'd like to introduce you to @superdave, who was also diagnosed with synovial sarcoma. I'm hoping the two of you can connect.

Hello @disneyrn

I am pleased that you found Mayo Connect, welcome. I do not have the same type of disorder you have, but I do have another rare form of cancer, neuroendocrine tumors (NET). Without Connect, I would feel very lonely in this journey.

I encourage you to read the posts of others in this discussion group and feel free to reply or ask them questions.

If you can share more, how was your synovial sarcoma diagnosed? What type of treatment(s) are you involved in right now?

Teresa

Hello,

I was diagnosed with synovial sarcoma earlier this year and am looking for others with sarcoma to talk to - it's so rare, I've really not found much in the way of support or information for patients online.

Looking forward to discussing more!

Hi @christine19
Welcome to Connect. I'd be interested in hearing more about your experience with DEB-TACE radiation treatment. I've been reading journal article about it online, but would like to hear more about the patient side of the treatment. What is it like? Are you finished with treatments or still getting them?