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Diagnosed with sarcoma? Let's share

Posted by @colleenyoung, Jun 21, 2017

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?

REPLY

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

I was diagnosed with Laryngeal Chondrosarcoma on July 12th, 2016. Fortunately after a very thorough diligence process which involved seeking out the best of the best surgeons across the country we found Dr. Eric Moore at Mayo. He was the only one out of eight doctors that was confident he could remove all of the cancer, rebuild my cricoid cartilage and maintain all of my functionality. On February 21, 2017 following five surgeries my trach was removed and I am cancer free and well on my way to a full recovery. My voice will never be the same given the tumor impaired my voice box and paralyzed on of my vocal cords. If there is any way in which I can add value I am happy to. Gratefully, Jeff

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

Thanks Jeff and Deb for kicking off this discussion. It will help new members and visitors find discussions about sarcoma and know they can have the confidence to ask questions of the community. The discussion between you about Cricoid Chondrosarcoma (https://connect.mayoclinic.org/discussion/cricoid-chondrosarcoma/) is a perfect example of getting support from someone who has been there.

How significant was reconstructive surgery for each of you? Was it done at the same time as tumor removal?

@colleenyoung

Thanks Jeff and Deb for kicking off this discussion. It will help new members and visitors find discussions about sarcoma and know they can have the confidence to ask questions of the community. The discussion between you about Cricoid Chondrosarcoma (https://connect.mayoclinic.org/discussion/cricoid-chondrosarcoma/) is a perfect example of getting support from someone who has been there.

How significant was reconstructive surgery for each of you? Was it done at the same time as tumor removal?

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I had all done in a single surgery. Remove tumor and affected cricoid cartilage and then the trachea was rotated 90 degrees and reattached so that tracheal cartilage could support the airway in place of missing cricoid cartilage. The procedure was called a Rotational Tracheoplasty. I spent the first month post-op in a minerva brace (neck brace) to restrict movement while healing.

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one “looking suspicious”, on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells “floating” in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that’s in the realm of our new normal now. We’re obviously in the early stages of trying to navigate through this “Brave New World”, and trying to figure out where/how to find women with my type of cancer.

@diane060

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one “looking suspicious”, on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells “floating” in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that’s in the realm of our new normal now. We’re obviously in the early stages of trying to navigate through this “Brave New World”, and trying to figure out where/how to find women with my type of cancer.

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Hello @diane060 and welcome to Mayo Connect. I’m so glad that you found our online patient support community. Your post was very well written and understandable, however, please do not concern yourself about writing style. This online community is here to express feelings in whatever way they come out!

I am glad to hear that your surgery went well and that your lymph nodes were clear, that is good news. I can certainly understand, however, your concern about “positive for cancer cells “floating” in the abdomen” and the upcoming chemotherapy. I appreciate your honesty when you say that you are feeling anxious, we all feel that way when we have a cancer diagnosis. I have had 3 surgeries for a rare, slow growing type of cancer, neuroendocrine tumors, (they were not gynecological but in the digestive tract) and I understand the anxiety that comes with each upcoming surgery and anticipated treatment. However, in time we have all adjusted to this “brave new world” as you so aptly named it and we go through treatment with all of it’s anxieties and upheaval and then get on with our life.

We have many members who have also had gynecological cancer surgeries and treatments and I’m sure that some of them will be joining the discussion with you. We look forward to getting to know you better and supporting you through this time as you adjust to this “new normal.”

Are you feeling recovered from your surgery now? Do you have a good support network around you – family, friends, a faith community?

Teresa

@diane060

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one “looking suspicious”, on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells “floating” in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that’s in the realm of our new normal now. We’re obviously in the early stages of trying to navigate through this “Brave New World”, and trying to figure out where/how to find women with my type of cancer.

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Hello Teresa,
Thank you for responding and for your words of encouragement. I am recovering very well from my surgery, 4 weeks post-op. I DO have the most wonderful support system in family and friends. I am MOST fortunate to have my wonderful husband of nearly 40 years, along for this ride. 🙂 My faith is strong, and I like to say that it’s steadily growing faster than the cancer ever was. I have also begun meditating, which has helped me in ways I never imagined. I decided very close to the onset of this journey to use FB to tell my story and keep those interested informed. That has opened floodgates of prayers & love that have wrapped their arms around me. It’s been overwhelmingly joyful at times. While I’ve often thought about what it would be like to experience continuing education later in life, I never imagined this type of education. 😉 But, it is what it is, and I continue to be thankful for every day that I am being gifted. ~ Diane

@diane060

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one “looking suspicious”, on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells “floating” in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that’s in the realm of our new normal now. We’re obviously in the early stages of trying to navigate through this “Brave New World”, and trying to figure out where/how to find women with my type of cancer.

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@diane060 I totally understand that you didn’t choose this type of education – but I suppose we take education whenever it comes our way. I am so glad that you have a strong support system in place, that will make a big difference for you. Best wishes and continue to share with us. Teresa

Liked by diane060

@diane060

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one “looking suspicious”, on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells “floating” in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that’s in the realm of our new normal now. We’re obviously in the early stages of trying to navigate through this “Brave New World”, and trying to figure out where/how to find women with my type of cancer.

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Hello @diane060,

I’d like extend my welcome, and thank you for sharing your history in the group; I’m glad you’ve connected with Teresa.

There are a few conversations on Connect that might interest you:
Video Q&A: Genetic risk factors for breast, gynecological cancer: http://mayocl.in/2ubvyr0
Endometrial Carcinoma: Rare, aggressive, hard to treat but don’t worry: http://mayocl.in/2twvRzh

I would like to invite @patricia5, @judithvt, @dorkmom2, @georgiajb, @kate123, @mdotsie, @skunklady13, @dezi and @pedie as they all have experience with uterine or endometrial cancer and may be able to help alleviate some of your concerns.

In this discussion, “New to group. Have ovarian cancer,” http://mayocl.in/2tcqMJL, you will meet @crystalgal @caf132 @katethegreat @joannedb, and others who have posted about Taxol, and I hope will join us with their insights.

@diane060, how can we help with regard to your questions, and concerns about the upcoming chemotherapy?

@diane060

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one “looking suspicious”, on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells “floating” in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that’s in the realm of our new normal now. We’re obviously in the early stages of trying to navigate through this “Brave New World”, and trying to figure out where/how to find women with my type of cancer.

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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.

@diane060

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one “looking suspicious”, on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells “floating” in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that’s in the realm of our new normal now. We’re obviously in the early stages of trying to navigate through this “Brave New World”, and trying to figure out where/how to find women with my type of cancer.

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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

@hopeful33250

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

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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.

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