Diagnosed with sarcoma? Let's share

I currently am a 69 year old female. I surgery leiomyosarcoma in Feb 2020. It was a 8 1/2 hr surgery which was wrapped around my right kidney which they removed at UW Madison. One year later it went to my liver which they did an ablation. Then it went to my lung and I was doing chemo from Oct 2021 to Feb. 2022. This week May 2023 I started doing radiation on my lung for small tumors. The cancer is a stage four. Treatable but not curable. They keep it at bay for about a year and it comes back.. hopefully they will find something to cure this sarcoma.

In October of 2016, after a 3 week vacation hiking the National Parks, I discovered that my right leg was swollen with a rash and redness. I went to my primary doctor who suggested I go and see if I had a blood clot. No blood clots. I proceeded to see a podiatrist thinking I had broken or sprain my foot. ( I have a high tolerance for pain). I had an EKG and a vein mapping done. I had CT scan that showed a tumor in my pelvic area. I even had a small surgery from a DR.James. Cooper that was unnecessary. He had told me that he could open me up and find out what this tumor was. He misled us. He told me a needle biopsy would only be a 50/50 chance of showing what this tumor was. Come to find out - he was wrong. After the minor surgery, the doctor told me he could not see the tumor and the biopsy of one lymph node was negative. I decided to have an MRI and again the tumor showed up in the pelvic area.
I finally broke down and went to a cancer doctor who recommended a needle biopsy. This is when they determined that it was a pleormorphic sarcoma. I knew NOTHING about sarcomas and started researching. After going to another surgeon and a vascular surgeon, I decided that I did not want to create my ow team of doctors and that I needed radiation when I was having the tumor taken out. The only ones to do this type of radiation is Mayo. It so happened that this second surgeon could facilitate to get me to Mayo. We decided to take this route.

I feel very fortunate that I was admitted to Mayo very quickly. It was determined that the sarcoma had started in the soft tissue and was leiomyosarcoma, I had to redo my research. Because my tumor was under 5 cm. I had a good chance of making it. I immediately felt that everything was going to turn out good and I keep my spirits up the whole time. I shared my thoughts with a lot of my friends and family on Facebook, thus the constant positive feedback.

I took 5 weeks of radiation through Mayo Clinic. (25 treatments in two different areas of my hip). I can tell you that the making of the mask for my radiation was the worse part, but otherwise things were great. I went to the gym 3 times a week and rode the bike for about 40 minutes each time. It helped with the fatigue. I only felt tired one day and after the gym, it went away. I have a slight discolor in the area of radiation. Still I kept my spirits high.

I had my surgery on June 6, 2017. I am 67 1/2 years old. I was in surgery 8.5 hours and recovery for 3 hours. The radiation had killed 20% of the tumor. I had 8 doctors in the operating room with me. The surgeon was able to take the small feelers from an artery and pul it from my iliac vein. The tumor scooped out nicely with 'clean' margins. It had grown from 3.5 cm. to 5.2 cm in that small amount of time. I am glad that I did not know that. The vascular surgeon was able to take the tumor away from the main vein and repair the vein. No one knew what they would actually find once they opened me up. They thought I would have to have the main iliac vein cut and grafted from another vein, but I was fortunate that we didn't have to have that done.

I was in the hospital for 5 days. I was on the road to recovery when 5 days later because I was NOT given blood thinners, I was back in the hospital for blood clots. I stayed in the hospital for another 3 days. The hospital stay was not that great. The fact that I ended up with blood clots put me back quite a bit for a fast recovery. I got rid of the pain pills in 10 days (much too long to be on them, but Oxycodene is very addicting. I started taking 500 mg of Tylenol for 4 or 5 days and stopped that. The recovery is slow because of these blood clots, but I am surviving.

On the 18th of this month I will be seeing my surgeon to get his feedback on how I am doing. I will have a CT scan of the pelvic and abdomen to see how the clots are doing. I will have an MRI to keep an eye on the sarcoma coming back. In fact, for the first year, I will have to have an MRI every 3 months. I do not have to take chemotherapy although I was offered it. It could work or it wouldn't. I decided I wanted the quality of life back I had before this surgery and chemo would not offer that, plus it is not guaranteed that it will keep the sarcoma away. I figure I will take my chances and I feel confident that it will not come back. I will be monitored for 5 years. Once the clots are going, i will ask to get off of the blood thinners.

I feel the doctors at Mayo Clinic are the best and if I had not gone to them, I would not have the outcome that I do have. I believe in a lot of personal research to understand what you do have and the research behind it. A person has to think for themselves with the doctors help. It has been a month since my surgery and my leg is still swollen, and I still have the clots, but every day I see an improvement. I feel fortunate to be alive and I am so glad that I went to Mayo for this surgery. My suggestion is to stay positive at all times. It really does help.

I really don’t have any help for you. My breast cancer is not from the Leiomyosarcoma which is rare and uncurable cancer I’m at a stage 4 but treatable. Although it has returned to my lung radiation is being set up as we speak.
I also have stage one breast cancer and they are removing lymph nodes from under the left arm. So do you get lymphedema when they remove the lymph nodes? Do you get much swelling from it? Or pain?

I’m sorry you have been going through all of this. Stressful and devastating. Certainly a huge punch in the gut. I urge you to reach out to your local cancer center for emotional support and counseling. Here’s my story:
I had radiation for a low grade hormone positive BC in 1999. In 2017 I found a lump under my arm and it was spindle cell pleomorphic sarcoma. 2 surgeries to remove 2 ribs and get wide margins. Extremely painful recovery with questionable lung nodules. Then one year later they found another breast tumor in the exact spot where the radiation boost was delivered. Triple negative BC this time, bilateral mastectomy and chemotherapy. Possibly radiation induced but nobody has declared that. I had an emotional breakdown after the mastectomy surgery, no block given and woke up feeling like they had taken a burning hot machete and sliced off my breasts. It was a very traumatic experience and I still have flashbacks. You have been through some very traumatic experiences so you may want to consider some counseling to help cope with that. I’m 5 years out and still go for emotional therapy. It has helped me get out of my own anxiety and fear. It’s not easy and PTSD did a real thing. Please reach out to me when you need to talk, cry, swear, whatever it takes

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?

My case was very similar. Private. Message me if you want to chat.

Hi. I just got biopsy results back indicating angiosarcoma in my left breast probably due to radiation treatment I received for breast cancer 6 years ago when I turned 50. I also had 8 lymph nodes removed back then so I’ve been dealing with lymphedema in that breast. I had a bruise that went away then returned about 8 months ago. Didn’t think much of it till it started to spread and the skin thickened. I know this is rare and am seeking the best care. Any help appreciated.

Hello everyone! I’ve been trying to find a Sarcoma support group for years! So thank you @colleenyoung ! I was diagnosed with Low-Grade Endometrial Stromal Sarcoma following a Myomectomy in which the 15cm tumor had been manually morcellated in November 2019. In an attempt to coverup what the surgeon had done, they clinically staged me as 1B prior to the hysterectomy a month later, by which point my entire Uterus was tumor. 100% myometrial invasion. Standard protocol would be to Surgically Stage, yet this corrupt hospital network (the obgyn, pathology, oncology, records, “patient advocacy” office… all united to ensure that my own health information was kept from me) told me I was still 1B. It took me MONTHS to piece it all together. The day I did was the most terrifying day of my life, I’d say. To have this rare, aggressive cancer and feel more afraid of the doctors than I was of the cancer. I thought if they could be that devoid of ethics and morals AND seemingly VERY determined to hide their dirty laundry aka Me, my life was in danger from both the cancer AND physicians. I felt so violated, so dehumanized. We specifically agreed to do the surgery, abdominally, because of how important it was to remove it “en bloc”. He was supposed to remove the uterus if he couldn’t get it out in one piece. I was 40 and had never pined for children. Then, once I am unconscious, he decides that saving the uterus should be more important to me. Possibly, he figured I didn’t know my own mind. Possibly, I was a science experiment. Possibly, he’s a Sociopath. But what is scarier than what his motivations might’ve been, was, how quickly the cover-up began. That very day they knew. I now receive treatment at a cancer center about 2 hours away. I am working on the fear and distrust I have of Hospitals and physicians, but I feel forever changed by that experience. Other doctors, even at my new cancer center, would stick up for him, and say that because Sarcomas are so rare, slicing it into thin pieces with a scalpel was a mistake that any doctor could’ve made. These doctors had never met the man, who understand the concept of ‘Informed Consent’, I’d hope, would say this to me, compounding my trauma by making defensive comments for the man (and Hospital Network) who, as far as I was concerned, had violated my unconscious body as well as many Medical Codes of Ethics. It made no sense. It was terrifying to think that doctors across cities and states that have never even met, would unite against a patient. Has anyone else here had a Uterine Sarcoma morcellated? How were you treated/communicated with? Honesty and acknowledgement should be THE ONLY way Hospitals address Medical mistakes. I’d be a different person today if my humanity had been acknowledged…
So far, treatment-wise, I have had 3 surgeries, take Anastrozole 1mg daily, and get CT scans w/contrast every 3 months.