Diagnosed with sarcoma? Let's share

@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.

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.

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.

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. 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.

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.

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, my name is Valerie. I was diagnosed with gastric Leiomyosarcoma, and they believe it is benign but I have all of the symptoms of cancer. They will not know for sure until the tumor is removed. I've tried medications and there are too many side effects. Is there any kind of therapy that will help with pain and breathing issues other than medications that you guys can share? Looking for any help please....

Hi Valerie, You might try acupuncture for pain. Also yoga may help with breathing easier.
Best of luck on your diagnosis. Let’s hope it’s NOT cancer and you get some relief soon. /christine19

Hi, Valerie. I was diagnosed with a uterine leiomyosarcoma with extension into the colon in February. I have found pain is very personal. Things that have helped me include traditional helps for relaxation of the whole body like massage from a therapist skilled in treating people with serious medical problems, hot baths, imagery and prayer, etc. What has helped me most is craniosacral therapy. I receive it from a physical therapist, therefore it has been covered by insurance. Craniosacral therapy may be learned by any professional who has a license allowing them to touch people therapeutically and that includes pysicians (especially DOs), nurses, chiropractors, massage therapists. There are probably more disciplines and it varies some by state.