Diagnosed with sarcoma? Let's share

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi’s sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let’s get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Liked by Dee

@sarcomasurvivor

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.

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@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

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@christine19

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

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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…

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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

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@christine19

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

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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.

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@christine19

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

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

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@jeffk

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

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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

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@cvandyke

In December 2016, I was diagnosed with low grade metastatic uterine leiomyosarcoma. I had some troubling symptoms in December 2014. A CT scan indicated a very large uterine tumor, and I was scheduled for a radical hysterectomy. I was told the tumor was the size of a softball. The pathology report came back with a rare diagnosis of a Smooth Muscle Tumor of Uncertain Malignant Potential (STUMP), which means that the tumor wasn’t benign, but it didn’t qualify as being considered malignant either. The pathology report was sent to Mayo Clinic and two pathologists confirmed the diagnosis. My surgical oncologist, who is very well respected both nationally and internationally, indicated that he had never had a patient with this diagnosis. The protocol indicated no further treatment other than to monitor me through regular CT scans. My first six month scan indicated a tumor in one of my kidneys. I was referred to an urology oncologist for surgery. The pathology report indicated I had Chromophobe renal cell cancer, which also is somewhat rare. Once again, Mayo Clinic confirmed the pathology report. Surgery was the only treatment with CT follow-ups. In March 2016, a CT scan of my lungs indicated a small nodule. Six months later, there were a couple more nodules and by December, a CT scan showed 4 nodules. At that point, it was felt that one nodule was big enough to biopsy. The diagnosis was a low grade metastatic leiomyosarcoma as the biopsied tissue was uterine based and tested positive for estrogen. Three doctors from Mayo confirmed the diagnosis. My surgeon referred me to a medical oncologist who is head of the sarcoma program at a major Chicago hospital, who explained that the latest diagnosis changes my STUMP diagnosis to a leiomyosarcoma. Because the lesions are estrogen dependent, I have been prescribed Anastrozole (generic for Arimidex), which is a drug taken by many breast cancer patients. The drug blocks the formation of estrogen in your body. The lesions need estrogen and without it, they can’t grow. After two months on the medication, a CT scan indicated one nodule was gone and the three others had shrunk in size. My next scan is in a couple of weeks and I’m hoping for more good results.

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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.

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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 🙂

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I have chrondo Sarcoma. My name is Leslie

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@hopeful33250

@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

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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.

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You are very stron Leslie
Enjoyed your friends they’re very precious.
Share with them.
Take Care.
Carpe Diem
God Bless.

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@capricorne1

You are very stron Leslie
Enjoyed your friends they’re very precious.
Share with them.
Take Care.
Carpe Diem
God Bless.

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Thank you so much!!❤️👼 Yes, keeping them all close. Appreciate the positive feedback!!!!

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@ld57feast

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.

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Welcome to Connect, @ld57feast. Like @capricorne1 said, you are very strong. And fortunate to be surrounded by people who come to visit. I thought you might also be interested in this discussion in the Cancer group where people living with stage 4 cancer talk about all sorts of things openly and honestly – humor included. Everyone has a different cancer. Metastatic is the commonality.

– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

@ld57feast, do you live on your own or with family?

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@truk182

Hello,
I was diagnosed with low-grade myofibroblastic sarcoma on my tongue in July 2015. Other than trying an occasional cigarette or chew in my younger days, I wouldn’t be considered a smoker of any degree. A considerable portion ( I don’t know the exact percentage but to me, it was/is considerable amount) of my tongue was removed on July 30, 2015. My wife, a dental hygienist, tells me quite often that I am a lucky guy. It was removed by surgery, no chemo, no radiation. She has made me aware of the “could have” scenarios. Spots were also found on my lungs and I had lung surgery in August, 2015. The spots were non-cancerous. In the meantime, I had started my new job of high school principal on August 1, 2015 after teaching Spanish for almost 20 years. I spent two years as principal and this fall I’m going back to teaching Spanish.

My followup visits with my surgeon and MRI’s have all been good. My physical state is fine. I still struggle with my speech. People tell me they can’t notice it but I can. They are too nice to say anything, in my opinion.

It’s been a rough two years. I struggle daily with my speech and how I sound versus what people tell me they hear. Not sure if this what this group is for but there it is. Thanks for giving me an opportunity to share my story.

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@truk182– my daughter had myofibroblastic sarcoma-high grade. I’ve never heard of another person with this type of sarcoma. Her tumor was located in her leg, so she had an above knee amputation at Mayo about 12 years ago. She’s been thriving ever since. Hope you’re doing well & still teaching!

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@colleenyoung

Welcome to Connect, @ld57feast. Like @capricorne1 said, you are very strong. And fortunate to be surrounded by people who come to visit. I thought you might also be interested in this discussion in the Cancer group where people living with stage 4 cancer talk about all sorts of things openly and honestly – humor included. Everyone has a different cancer. Metastatic is the commonality.

– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

@ld57feast, do you live on your own or with family?

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I live with my husband, 2 cats and 2 dogs. Had 2 walking horses. But had to sell one last year and donated other one to medicine horse for handicap, autism kids and adults.

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