Diagnosed with sarcoma? Let's share

Hi!
I guess my main concern is fear of the unknown and I worry that I may not tolerate my "cocktail". I am less concerned with losing my hair than the nausea/vomitting and protection of my bladder and kidneys. I need to drink 80-100 ounces of fluid daily, and I worry that nausea may interfere with the ability to do that. I feel pretty great right now, and know that will all change in 10 days. I am maintaining a positive attitude for the most part, thanks to my little Jesus Calling devotional and meditation, so at least there's that. It feels strange to be more afraid of the treatment than I am of the cancer.

My oncologist did tell me that the nausea is pretty well managed by meds, and I also have my own "plan" to help deal with that [with my oncologist's "blessing", so to speak. He said the main complaint is extreme fatigue.

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.

Hello @truk182 and welcome to Mayo Connect. I can understand your frustration with speech - since you are an educator, communication is an important part of your career. You say you struggle with speech. So that we can better understand this, as you feel comfortable, please let us know more about this struggle. Are your words garbled? Do you have problems forming words? Has speech therapy been suggested? Teresa

Here are the sounds I have trouble pronouncing clearly: s, d, double t's, th. I went through speech therapy and I improved over the first 6-9 months and I was fitting with a mouthpiece, similar to a kid wearing a retainer after braces. It is thicker which gives my tongue something to touch when I talk. That has helped as well. I don't go therapy any more; I guess they believe it's not a problem. People say it's hardly noticeable but to me it's pronounced. Speaking... speaking Spanish, more specifically, has been my life for as long as I can remember but now I can't do that as effectively as I once did. That just kills me, figuratively speaking. I have never been the most social person either but now I sometimes I withdraw from social conversations for fear not being understood.

@truk182 I appreciate the further detail you provided. I also understand the withdrawal phenomenon when your speech is affected. I was diagnosed with a paralyzed vocal cord several years ago. When I talked it sounded like a permanent case of laryngitis - I was always very tired from talking because I had just one vocal cord doing all the work, and I was exhausted from the effort. I began to talk less and less. After having surgery to provide "a fix" for the vocal cord, everything got better. I would encourage you to keep talking. Perhaps a second opinion from another speech therapist would be helpful as well. Speech therapists often use different methods to treat speech problems. Also, I just posted, under the cerebrovascular diseases' category, something about Aphasia, https://connect.mayoclinic.org/discussion/june-is-national-aphasia-month/. While this term does not exactly apply to your situation, you might take a look at it and see if you find any of the thoughts in the post helpful. Have you ever recorded your voice to see just how you really sound to others? Teresa

My name's is Helen and I finally have been diagnosed with Dermatofibrosarcoma Protuberans. My turnour is very large measuring 6"x4" and approx 1 1/2" bubbled out. It is located at the bap of my neck with the top a fingers width from the base of my skull. For 3 1/2 yrs I've been misdiagonesed with a keloid and have been receiving corazone shots every three weeks. My tumour has easily tripled since the injections started. Once properly diagnosed things moved quickly. My results from two deep biopsies came back positive June 4 this year and I'm waiting a surgery date in Toronto, ON. Hoping for the best at this point. Thanks for the connection !!

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.

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I've had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I've found much support on the sarcoma support groups on Facebook.

Hello Helen and sorry to hear of the misunderstanding leading to delay in treatment, and sad to say not considering dfsp as a first response is surprisingly common among an uncommon tumour type. There are several variants of dfsp. Do you know which you have? For a larger tumour, has there been any discussion of preliminary course of Imatinib Mesylate (Gleevec) with a view to reduction in size pre surgery? Are you having MOHS surgery or Wide Excision? Have you planned any scans to attempt to establish the size of the main tumour, and or eliminate bone invasion?