Diagnosed with Uterine Cancer (Leiomyosarcoma)

Posted by cjacobs99 @cjacobs99, Mar 4, 2022

I was diagnosed with Uterine Cancer (Leiomyosarcoma) this month. Two months ago large mass was found in my uterus. Prior to that, there were no signs or symptoms of large mass. I received my Covid vaccine on 12/9/21 on the first day of my cycle. My period went from being very heavy to light spotting that month. This never happens. Ten days later I went into the ER due to severe pelvic and abdominal pain. A CT scan confine a large tumor (tennis ball) growing in my uterus. I have no history of fibroids and a recent Ultrasound confirms that. Less than a month later I developed Covid(delta/omicron unknown) and my recovery time over three weeks. During that time my uterus/tumor doubled in size, as if I was in my last trimester of pregnancy. A full hysterectomy was performed and biopsy confirms uterine cancer (lmsarcoma). I believe the Covid vaccine and infection triggered the cancerous tumor to grow rapidly in a short period of time causing the pain and discomfort to manifest. Curious if anyone else has experience with the impact of Covid and cancer.

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@cjacobs99

I’m glad you are able to see a doctor at high volume Sarcoma Center. It is very important and crucial that LMS patients get treatment by a specialist. It makes a Huge difference in care. I’m being treated by Dr. Ganjoo at Stanford.

My subtype is epithelioid LMS. We are in a very rare group. There is a Facebook support group I joined called LMSDR.org that has really helped me out. You should check it out, if you haven’t already. Wealth of information and experience in this group.

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Looks really good, I’m applying. Again, thank you.

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@cjacobs99

It will be two years next month from when they found the first tumor. Since then, I’ve learned that these tumors can grow rapidly, doubling in size within a month.

I’ve treated three lung tumors all were small, less than 1.5cm by targeted radiation and one cyrobalation. I have a PET scan next month, so hopefully 🙏 all is clean.

I know this disease is a horrible beast that I’ll be fighting for the right of my life. I’m learning to live my life through the cancer and treatments.

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Actually, this is an encouraging reply. I fear the lung part, but I see there could be success with treatment. I realize you’ll know more after the pet scan, but still…
Thank you and hoping for the best…

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@marchelle

I am so sorry the late response. The doctor said that treatment is working, tumors are shrinking. I got covid the first week in October and they stopped my treatments until November 2nd. The doctor said that hopefully there was no growths because of me not having treatments for 3wks. I fully trust God.

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This is great news, So glad your treatments are working. Praise God!
My husband is receiving mixed results from his chemo. Most of the LMS tumors in his lungs are shrinking but some are continuing to grow. He also was off of chemo for 6 weeks due to infections and covid but his latest CT still shows progress. He has a consult for radiation on the tumors that are still growing in a couple of weeks, praying that will take care of them.
What kind of chemo are you taking? He is taking Docetaxel and Gemcitabine.

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@smcquaig

This is great news, So glad your treatments are working. Praise God!
My husband is receiving mixed results from his chemo. Most of the LMS tumors in his lungs are shrinking but some are continuing to grow. He also was off of chemo for 6 weeks due to infections and covid but his latest CT still shows progress. He has a consult for radiation on the tumors that are still growing in a couple of weeks, praying that will take care of them.
What kind of chemo are you taking? He is taking Docetaxel and Gemcitabine.

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I had lung metastasis too. Three tumors in my lungs. After my hysterectomy I started Doxorubicin, 6 cycles. The Doxo helped stabilize the cancer but didn’t really shrink the lung tumors. After the chemo ended, I treated my lung tumors with SBRT and one with cyroblation. I’m on a hormone blocker and my last PET scan after all treatments were completed shows no evidence of disease (NED). I’ve been battling for nearly two years and one month NED.
Has your husband had genomic testing done his original tumor? It would show if any other chemos/clinical trials may be available based on the mutations of the tumor.

. Radiation to my lungs was very successful. I hope it works out for your husband too. I’ll be praying for you both!

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@marchelle

Thank you. I'm not sure if you will see this, but you encouraged me. I was diagnosed with leiomyosarcoma in January 2023, after having a total hysterectomy. It metastasized to my lungs, on my 2nd round of treatment. Trusting God and staying positive, all the way. I

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Sorry, just saw this. The last year has been crazy with treatments. Just checking in. I hope your treatments went well. Were you able to treat the lung Mets? I had mine treated with SBRT and one cryoblation. They all went successful.

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@joan450

Actually, this is an encouraging reply. I fear the lung part, but I see there could be success with treatment. I realize you’ll know more after the pet scan, but still…
Thank you and hoping for the best…

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The SBRT and cryoablation were successful. My last PET scan in December confirmed there is no evidence of disease (NED)!

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That's great! I am so happy for you!
My husband is doing radiation this week and the doctor is hopeful....only positive vibes around here!
They did the genomic testing early on after removing his leg but there were no trials available.

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