Diagnosed with sarcoma? Let's share

@ventibug I am sorry to hear about your recurring, praying all goes well!

Pain is such a personal struggle. I think it is important to trust yourself AND be open to new strategies. Not an easy balance to find. But little about this experience is easy, is it? You are listening to options and I trust you to decide what is best for you. Accupuncture was very helpful to me in the past and I would not hesitate to return if it feels right again. It is not helpful for everyone but it is not dangerous either so, worth a try?
It is rare indeed to talk to a person with cancer who is not overwhelmed with FEAR at least part of the time. I know I was driven to complete distraction! Not knowing was the hardest thing for me. Knowing what I had was devastating but, strange as it sounds, I got used to the idea. Okay, it took months, but I got there. I've had a recurrence and the data is not encouraging. But I feel okay most of the time, have a few knits that allow for me to go up and down the #50 that I keep gaining and losing, and am finding joy and purpose most days though I have had to stop working and close my business. And I haven't been in-patient with complications in 2 chemo cycles (my personal record)!
You haven't had a chance to "know" so you can get used to anything. I believe you will get some answers at Mayo. They are so well-respected around the world. Then you too will be able to start to adapt to whatever you learn. There is certainly grief with a cancer diagnosis but you can do that, too, IF you have to do so. If not, YAY! Then you still have to find pain control strategies right for you.
During one of my hospitalizations this year, I whined to the attending that, for me, chemo was a full time job. She replied that she told sarcoma patients that all the time! It wasn't good news, but it was normalizing. Hopefully, talking on this site is also normalizing for you; it has been for me and I feel understood by others who have "been there". I pray you learn more very soon.

Hello Deb, I hope that this note finds you in great health! My wife and I were at Mayo on Monday for my first full year annual check-up and I am delighted to report that I ma totally cancer free, the reconstruction sight looks pristine and there has been no shrinkage at the sight as well. I am exercising and running and having the time of my life with our grandchildren. I look forward to hear of your progress and wish you well. Your fellow survivor and thriver, Jeff

Thank you. I've tried every rub, cream, herb, yoga, meditation, etc you can think of. The only thing I haven't tried is acupuncture. I guess I need to research it but can't see how it would help? The B'ham docs went back and forth with a 50/50 cancer diagnosis and that is why I finally decided to come to the Mayo. I feel strongly that they will be able to help me but honestly, the symptoms are so great the FEAR of cancer is very heavy on me right now and has been for the past five months. Looking for any relief I guess, even if it's just someone to talk to...

@sarcomasurvivor

I am glad that you shared your story with Connect! How wonderful that you went to Mayo and received a refined diagnosis. I'm also glad to hear that you are following up on a regular basis. I find it difficult to believe when a doctor doesn't want to follow up with a cancer survivor.

Teresa

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.

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, 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....

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.