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Uterine Leiomyosarcoma

maier's picture
maier
Posts: 3
Joined: Jul 2004

Hello Everyone -
I see it's been a while since there was a posting, so I thought I'd keep it going. Here is my story and God Bless us all.

I am a 39 yr old mother of 3 (5, 3, and 1). I had been having very heavy periods for a few months, just figuring it was from childbirth last Aug. I finally called my OB, he said to have a sono. They found a large fibroid tumor (size of a baby's head) and said it was benign so not to worry but I needed to have a hysto. So my hubby and I put if off until Sept. Ten days later I got my monthly again, but much worse so I called my OB again and they got me to surgery within a week(6/24/04). The procedure went well, but my OB was surprised at the tumor size (1 & 1/2 size of a football). My last day in the hospital, my OB/GYN told me they found a leiomyosarcoma in my uterus which surprised him, because cancer was not visible from the outside. They told me I was lucky to get it early. The cancer was encapsulated in the fibroid and did not appear anywhere on the outside. MY D&C was clear, as well as the endo curretings and I've had 1 clear CTScan in July. I've seen 2 GYN Oncos. for opinions. My first Onco. was great, very positive and the second was very negative who told be it's between me & God. But they both agreed not to radiate the area but to see if it metastizes. I have to have a pap smear every 2 mths. and CT Scans every 3 months. I feel like a sitting duck. I have an appt. scheduled at Johns Hopkins on 9/1 and they seem to be more thorough (they want all my surgical slides, CT films, and surgical reports). I am trying to be as positive as possible and so far I am cancer free.

I have been through a lot of grief in my life but I've never been so scared. It seems as if things were too perfect, life just jumped up and bit me in the butt. I am much closer to God now and feel sure things will work either way. I cry every time I think about leaving my little kids. I'm not so afraid of dying, but afraid of hurting my kids. My hubby is very positive and keeps assuring me it's not coming back. All I can say is to be a positive as possible and to keep praying and ask God for acceptance and strength. I appreciate every moment I have with my family and I simply ask God for strength and thank him for the day.

groundeffect
Posts: 651
Joined: Mar 2003

Cancer is a very scary thing, to all of us, so take comfort in the fact that you're not alone! I read about the form that you were dx with, and it is rare, but the fact that it was found early is good, as with all gyn. cancers. I was diagnosed with stage 1B endometrial cancer, and was found to have stage 1C ovarian cancer when I had a hysterectomy, so I'm doubly lucky!

I had chemo, but I think that was decided only because of the ovarian. The uterine cancer was not advanced to the point that radiation was considered.

Don't be afraid! There are many women who have had higher stages of cancer who have long lives after a diagnosis, and if you had a lower stage, you should do well. If you read these boards a while, you'll see long time survivors. Keep a positive thought train going for both yourself and your kids!

On another note, I had fibroid tumors removed via a myomecotomy when I was 42. I didn't want to have a hysterectomy that would put me into menopause at that age. There was a biopsy, and the fibroids were free of cancer, but I did have one that weighed 3.5 lbs., and it was a real relief to get rid of them. I had about 6 years of "female trouble" free life before I started in with the uterine and ovarian cancers.

grannyfranny
Posts: 42
Joined: Jan 2004

How are you doing now? Were the people at Hopkins helpful? It's a really good hospital & medical center.

As for the doc who looked at a completely encapsulated cancer & said "It's between you and God" - boo! hiss! If you'd gone to him with a head cold, he probably would have put you in the hospice program.

Fran

shellsfrfl
Posts: 3
Joined: Apr 2005

I was amazed when I read your story. It sounds more than similiar to mine. I am recently diagnosed with uterine leiomyosarcoma. I feel full of despair right now and reading your post did give me a glimmer of hope. Write me directly if you get this message at: shellsfrfl@hotmail.com. My name is Shelly. Have a good day!

Nanz1's picture
Nanz1
Posts: 12
Joined: Nov 2004

I was diagnosed with Uterine LMS 2 years ago. In the OR they thought it was just a necrotic fibroid. I was home after surgery when I got the call saying it was LMS. Since then I have had pelvic radiation, a second surgery to remove my cervix and persistent tumor (not recurrence) and now I just finished chemo therapy in March. I had Gemzar and Taxotere. I was told 60% of patients respond to chemo. Of the responders 50% are cured and 50% will have a recurrence. I am trying to live every day without fear but it is a constant battle. I would love to hear how you are doing and how you are coping.

Teacherof3
Posts: 2
Joined: Jan 2011

It's been a number of years since there has been a post in this thread, yet it still comes up in a Google search. When I was diagnosed with ULMS over two years ago, all I could find were articles that were despairing. I had surgery to remove my female organs, then after that I began a journey to strengthen my immune system and get my mind to work to heal my body. I have been completely clear of cancer ever since. I created a blog so that others could read about ways to strengthen the immune system (no matter what course of conventional treatment you seek), a place to go that is positive and uplifting. Please come visit me at :

http://uterine-leiomyosarcoma.blogspot.com/

Look for my past articles, especially the one on The Mind and the Body. There are some great links to free guided imagery that can help you empower yourself.

Blessings to you!

FullyPresent's picture
FullyPresent
Posts: 1
Joined: Feb 2011

It is very rare to find anything great on the internet about ULMS. Yet we need to keep our minds focused on thoughts that will relax and encourage us. The mind has such an incredible chemical-connection with the body. Our thoughts are transmitted as chemical/energy signals, and doctors for decades have proven that what we think affects our body chemistry.

I read a book that was very uplifting on this subject. It's called You Can Conquer Cancer by Ian Gawler. There are many other great books on this same subject, too. But in this particular book, Ian relates how he used the practice of meditation to relax his body and cope with the stress of a terminal illness. I found it to be very encouraging.

There are many other great ideas to support the immune system when you go to the blog posted above. Blessings to you!

Fully_Present's picture
Fully_Present
Posts: 5
Joined: Apr 2012

Just thought I would post as it has now been nearly 3 1/2 years since my diagnosis, and I have had no recurrence of disease. I have found Uterine Leiomyosarcoma Integrative and Natural Treatments helpful for ideas to strengthen my immune system. On my way to acupuncture this morning....it puts me into a deep state of relaxation. I listen to a guided visualization from Belleruth Naparstek while I am being treated. It's wonderful! Blessings to every other woman fighting with me.

Fully_Present's picture
Fully_Present
Posts: 5
Joined: Apr 2012

Just an update, it has been over four years since my diagnosis, and still no recurrence of disease. I created a Facebook page for women with ULMS - it is called Uterine Leiomyosarcoma Integrative and Natural Treatments. I also have a blog where I share everything that I do to help strengthen my immune system. According to medical research and medical journal articles, ULMS does not respond well to chemo or radiation. That is why MD Anderson advised that I did not have that treatment. I did have surgery to remove the tumor, but then I set on a course to help my body prevent it from recurring. Join me and other survivors on Facebook. Blessings!

Blessings2U's picture
Blessings2U
Posts: 6
Joined: Aug 2013

It has now been 4 years and 9 months since I was diagnosed with Uterine Leiomyosarcoma. I changed my lifestyle radically to remove stress and consume food like it was my medicine. I was given a 20% change of living 5 years, and I survived. I am vibrant and healthy with no evidence of disease. I never had chemo or radiation or any drugs, just the surgery. I have a blog and a FB page to support others who are interested in ways to strengthen the immune system: utereine-leiomyosarcoma.blogspot.com, or just search Uterine Leiomyosarcoma - Integrative and Natural Treatments. Blessings!

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