Diagnosed with sarcoma? Let's share

@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

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...

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

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.

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

Congratulations, Jeff! That is indeed wonderful news! All is well with me; I return to Mayo in November for scans. In April I elected to have a scar revision to the trach site, and am very pleased with the results. I don't know if you are on Facebook, but I follow a page called "The Voice Forum" (run by a Speech-Lang Pathologist with a specialty in voice disorders). Your story was shared on that page on April 20! Enjoy your summer and keep in touch! -Deb

I'm not sure that my response is relevant but I offer it anyway because I too was diagnosed and treated for a softball sized tumor diagnosed as third stage soft tissue leiomyosarcoma. My tumor was discovered in 2007 during a routine endoscopy. The gastroenterologist I followed up with in Chandler, AZ diagnosed the tumor as benign.

My internist wanted me to have the tumor removed. When I had gall bladder problems while visiting friends in NY in March, 2008 I scheduled surgery in NY to remove my gall bladder and tumor. During the surgery it was determinded that the tumor was not benign and in order to remove it from my retroperitoneum my surgeon had to remove one adrenal gland, my spleen, part of my pancreas as well as the tumor/leiomyosarcoma.

Recovery was slow--3 months on a feeding tube. I was referred to a radiation oncolgist in NY who suggested radiation. I wanted to get home as soon as possible and so I planned to follow up on radiation at the Mayo Clinic in Scottsdale, AZ. Monitoring my condition rather than radiation was the course recommended by Mayo radiation oncologist. I have had CT scans every 3 months for a year or so, then every 6 months and for the past several years annually. I have been very fortunate that the leiomyosarcoma has not recurred.

Later in 2008 my gall bladder (which was not removed during my first surgery) needed to be removed.

In November 2010, following an endoscopic exam, I was diagnosed with early stage gastric cancer and had a total gastrectomy following the diagnosis. Recovery from this surgery was easier than recovery from tumor removing surgery.
I will be 80 in October and just got back from Universal Studios in CA where I went with my young grandsons and family following a 10 day stay in Cooperstown, NY.

What I've learned from all this is to stay away from endoscopies (only joking). I wish you well.

Had my tumor removed last week and been complaining because of having to be on a soft diet for four weeks. After reading your response @rred I feel very selfish for complaining at all because at least I'm not on a feeding tube! it's just been hard to find foods that are desirable or digest well. The tumor was benign so I'm on the road to a full recovery. So sorry to hear some of your stories didn't turn out as well. Prayer has been my best therapy so far and I highly suggest it. My best wishes to you all 🙂

I have chrondo Sarcoma. My name is Leslie

Hi my name is Leslie. I was diagnosed with stage 4 chrondo Sarcoma. Chemo and radiation have no effect. First I had my RT femur removed and was stage 3 than in 4 months it metatsised into my lungs. I had tumor removal on my left lung, at which I was stage four and they said no more surgeries and I had 6-8 months. I traveled and now I am chair bound. I am on liquid oxygen and concentrated. Running between 16-24 lbs. My spirits are high and I have made it to14 months. Still eating and having visitors. God Bless each day.