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Leiomyosarcoma

liverpool13
Posts: 5
Joined: Mar 2011

My daughter was diagnosed with Leiomyosarcoma Cancer last week. She is 23. They found it when they removed what they thought was a cyst on her forehead three weeks ago. They ran a test on the cyst and tested positve for Leiomyosarcoma.
I have been searcing high & low for anyone who has or had something similar. Everything I have read had it in their uterus or stomach, hers was on her forehead. I am not sure if that was good or bad.
She has an appt with an oncologist soon and we'll find out more. In the mean time, I am going crazy. I want to protect her and take this away from her but I cannot. I cannot tell her it's going to be alright becuase we don't know!. I cannot tell her younger sister that her sister will be fien beacuse I do not know!
I am a mess and I cannot show them!

cfox1995
Posts: 4
Joined: Mar 2011

hi, my mom is a 6 year LMS survivor she has had 7 tumors in a wide variety of areas. I think your daughters LMS tumor was dermal (in the skin layers), from my 6 years of searching the web, I found very few of the dermal LMS tumors to have recurrences. I hope all goes well. Let me know if I can be of any help. My mom just had two removed from the cranial area on the left fore front of her head and one on the inside of the ear bone. Only 3/4 of the one inside the ear was removed to keep from spreading to the brain. She will receive radiation for this in a couple of weeks. Hopefully your daughter will not even have to go thru any of this. I'd like to know how she is doing... Good news makes me feel so much better. I'll be praying for you.

liverpool13
Posts: 5
Joined: Mar 2011

Thanks for posting. I felt all alone with my daughter on this one. There are a lot of cancer survivors and cancer patients, but not Leiomyosarcoma.
I flew down to see her which makes this even more harder for me since she lives in a different state than we do. We saw the oncologist but he did not have all the answers that day. All he said was that she needed another surgery to make sure the other surgeon took everything out & that he needed to take a bone sample on her forehead to make sure it did not spread.
She was sent for a ct scan on her thorax, abdomen, pet scan & an mri of her brain & blood work. She is being seen by one of the Cancer Centers that handles Leiomyosarcoma.
When I saw my daughter, her spirits were good. She seemed good. I hope that she is not doing that for show. I had to leave her again to go back home which breaks my heart but we she has a younger sister that also needs me.
I am still not handling it very well. As a caregiver yourself, how do you handle it?- I was all together when I was with her, but as soon as she turned her back, I was a mess, am a mess.
The world is such a mess and everyone worries about the tiniest of things that they forget the most important things in life... LIFE is important and we take it for granted. The one that wants it the most are the ones that are being robbed by it...
I appreciate your prayers.. I will also be praying for your mom.. I am happy to hear that she is a survivor.. THAT give me a lot of HOPE... thank you so much..

liverpool13
Posts: 5
Joined: Mar 2011

A year later, it came back!-- same place- forehead. Now she calls herself a frankenstein!..
Next step.... I dont know what.. have to wait to see the doctor in two weeks!.
I am scared, she is scared and tells me she doesnt have anymore strength to go on.
She is only 24yrs young!- On top of that, her boyfriend broke up with her. Now she is mending a broken heart and have to deal with this. She cant seem to catch a break!.. I am trying to be strong, but to see your child suffer breaks any parents heart. I feel so helpless...

rosehilldreamer
Posts: 7
Joined: Jun 2012

my sister tracey is 42. she has stage 4. it originated as a large tumor hiding behind her organs towards her back. she went through physical therapy, mri and it took them a year to diagnose. it had spread to her lungs and liver. my sister was overweight most of her life. Before the diagnosis she had a lot of weight and was in the best shape of her life. she has ryan and emily my 2 year nephew and niece which she conceive through 3 X invitro fertilization. no explanation for this rare cancer that only 4 in 1,000,000 get. she has had chemo for a year now. she has no quality of life. it is so sad seeing her with the kids knowing that she may not be here for them as they grow. i am up here in ny visiting her from florida. i am very sad and depressed.i could use some support. i have no friends. although i am a great person. please help

katmena
Posts: 2
Joined: Mar 2011

My mother was diagnosed last March, it started in her uterus and metastasized to her abdominal cavity at her 3 month CT scan post hysterectomy. She found an oncologist who has been communicating with a doctor that is doing research on this cancer. She is currently taking gemcitabine and docetaxil. After the first round of chemo, her CT scan showed no change to the tumors, and has started on a second round of chemo.

Sarahssr
Posts: 1
Joined: May 2012

Hi katmena,

Just joined the support group and read your comments about your Mom. Would like to hear how things have gone for her after her second round of chemo.I know it has been awhile since you have written.

I'm newly diagnosed with LMS and reaching out to learn more. I'm in the medical field so I know a bit more than the lay person.

Praying for you and your Mom.

rosehilldreamer
Posts: 7
Joined: Jun 2012

my sister tracey is 42. she has stage 4. it originated as a large tumor hiding behind her organs towards her back. she went through physical therapy, mri and it took them a year to diagnose. it had spread to her lungs and liver. my sister was overweight most of her life. Before the diagnosis she had a lot of weight and was in the best shape of her life. she has ryan and emily my 2 year nephew and niece which she conceive through 3 X invitro fertilization. no explanation for this rare cancer that only 4 in 1,000,000 get. she has had chemo for a year now. she has no quality of life. it is so sad seeing her with the kids knowing that she may not be here for them as they grow. i am up here in ny visiting her from florida. i am very sad and depressed.i could use some support. i have no friends. although i am a great person. please help

rosehilldreamer
Posts: 7
Joined: Jun 2012

my sister tracey is 42. she has stage 4. it originated as a large tumor hiding behind her organs towards her back. she went through physical therapy, mri and it took them a year to diagnose. it had spread to her lungs and liver. my sister was overweight most of her life. Before the diagnosis she had a lost a lot of weight and was in the best shape of her life. she has ryan and emily my 2 year nephew and niece which she conceive through 3 X invitro fertilization. no explanation for this rare cancer that only 4 in 1,000,000 get. she has had chemo for a year now.

4girls4me
Posts: 4
Joined: Sep 2010

I was diagnosed at age 41 with LMS in a vein in my hand. I have not been able to find anyone with a similar diagnosis. Last week I went for my check up and am happy to say that I have been cancer free for a year!!! I underwent surgery (prior to diagnosis), radiation and more surgery. I made it through because of family ( I have 4 young children) and friends support. Please let your daughter know there are many people praying for her. Take one day at a time!

rosehilldreamer
Posts: 7
Joined: Jun 2012

my sister tracey is 42. she has stage 4. it originated as a large tumor hiding behind her organs towards her back. she went through physical therapy, mri and it took them a year to diagnose. it had spread to her lungs and liver. my sister was overweight most of her life. Before the diagnosis she had a lot of weight and was in the best shape of her life. she has ryan and emily my 2 year nephew and niece which she conceive through 3 X invitro fertilization. no explanation for this rare cancer that only 4 in 1,000,000 get. she has had chemo for a year now. she has no quality of life. it is so sad seeing her with the kids knowing that she may not be here for them as they grow. i am up here in ny visiting her from florida. i am very sad and depressed.i could use some support. i have no friends. although i am a great person. please help

redhotnana
Posts: 1
Joined: Oct 2011

Dear liverpool13:

My husband was diagnosed with LMS last month; it is in his right thigh and is large, deep, and agressive. He began radiation treatments today, which, after 25 treatments to shrink the tumor, will be followed by surgery. He is feeling good except for some discomfort in his leg, which is very swollen. He is otherwise in excellent shape, still working and very active. I understand that this is a rare type of cancer, and don't know exactly what to expect.

It must be extremely difficult for you not living in the same state with your daughter--I can only imagine what you must be feeling! I can tell you that our friends and church family have been a tremendous resource for us--I can't think of anything we need that hasn't been provided for us, or at least offered--if we would take it! I'm sure we will need a lot of support as his disease--and treatment--progresses. We will have been married 53 years on New Year's Day, and we feel that every day we are given together is a gift, although we hope and pray for many more. We usually go on at least one overseas mission trip each year, and we are hoping to get in at least one more! While we have the perspective of many happy years to look back on, your daughter is looking forward to her best years, and I pray that they will be many. It sounds as if they caught hers fairly early. I will be praying for you and your family

liverpool13
Posts: 5
Joined: Mar 2011

My daughter was doing great. Her attitude was awesome. She said she had a full life ahead of her when the doctors said that she was clear about 3 months ago.
Then about a month ago now, her boyfriend of 5years broke up with her. A few days after that was her follow up MRI to make sure it didnt come back.
She didnt want me to fly down and be with her that day because she said her ex still offered to take her to her appointment.
The visit did not go too well. They found another lump on her forehead and right there and then, before she could say anything and process what they told her. they were taking a biopsy of the lump on her forehead again!-
She said she was crying and confused and she now feels like she is "Frankenstein" for having more stiches on her forehead.
I feel so helpless. I should have not listened to her and flew down to take her to her appt. But I think there was apart of her hoping that her boyfriend would change his mind about their relationship.
She was also thinking about the fact that we are always out of money and that the plane ticket down would be a big problem for us to come up with.
It makes me wonder, how can I help her when she needs me when I am up north and she lives south and our resources are very limited?
I have called support groups for advice & even airlines and they do not offer any answer to people like us.
How do people like us make it?- Do we just sit here and watch as they suffer alone?
I have been trying everything to figure it out. I am sure we are not alone.
Her job requires her to stay where she is and mine where I am.
So do we make the sacrifice and give up a job and hope against hope that somehow we'll "manage"?
How about when my daughter turns 26 and she loses her insurance thru us. Since her job does not offer insurance. What do we do then? That is only a year and a half away.
Do we sit here and watch as cancer takes her life.
Is that how we our society has become?
My husband & I have worked every single day of our lives and we try to help others when we can. But yet, we cannot seem to catch a little break.
We just want to see our children have their own family and not have to worry about being rich or anything. We just wanted them to be happy and healthy.
I have asked the question so many times, what have I done in my life that my daughter has to suffer this way?
Why did it not take me?- I am standing againt a wall and I dont know where to turn. My daughter uses me as her strength and I dont know where to go.

mkh74
Posts: 2
Joined: Oct 2012

I know firsthand the pain you are feeling. I lost my mom in 2003 to this awful cancer. She was 51 years young, with four adult children (the oldest only 31), three grandchildren (she has two more now that she never met!), and a devoted husband of 32 years. She battled for nearly two years, but I urge you to think as my mom's oncologist did--he never gave my mom a time limit to her life. He always said he would e wrong and his goal was to keep her alive until they find a cure. My mom was diagnosed at stage 4, with a primary tumor in her uterus that was the size of a six month old fetus.

I miss my mom every single day. My husband and my younger two children never met her, and it makes me sad. She would have only been 60 this year!

I urge you and your daughter to keep the hope alive! Learn as much as you can, fight as hard as you can and don't give up! Miracles do happen, even though it feels like you are in the middle of a nightmare right now.

You might not be able to physically be with your daughter right now, but you can still be her strength and her rock. If you haven't already, I'd urge you to find a therapist who has experience in either aiding those with chronic illnesses, those whose loved ones have a chronic illness, or both. I started seeing a therapist who had lost her first husband to non-alcoholism related liver disease, as well as work experience with AIDS patients. She was married again, but she spoke of how her husband was supportive of her love for her first love. Anyway, shgeh and I worked on ways that I could mourn and grieve when I was not with my mom, but keep it together when I was with her. She insisted that I would have no regrets if I learned to be strong and courageous in front of my mom, so that I could experience this difficult chapter in her life with her. She's right; I have no regrets. I was able to ask my mom if she was afraid, and she was able to answer me honestly. In the very end, I was able to tell her it was alright to stop fighting, that we'd be okay.

I am not suggesting that this has to be a death sentence for your daughter. But I am suggesting that now that life is throwing you some very big punches, there are ways that can help you live through this time with support and encouragement.

Also, right now, I'd suggest you research as much as you can about oncologists around the country who have dealt with this particular type of case. I am lucky that we live in Pittsburgh, which is full of world-renowned doctors and specialists. There are times, however, that I wish I would have searched for doctors elsewhere who have had success with uterine LMS. Perhaps we could have tried something else. I don't know.

As a side note, a few years ago, I was diagnosed with MS. Twenty years ago, there wasn't much doctors could do other than treat the symptoms for MS. Just twenty years later, which is short in terms like this, there are about five or six different disease modifying drugs that help to slow down the progression of the disease. There are quite a few new drugs in the pipeline that are in medical trials, up for FDA approval, etc. I'm sure when I was a little girl, patients with MS couldnt imagine the day when there was something that could be done to improve their lives. I still hold out hope for a cure in my lifetime. My point is to never give up. You never know when the cure will be found. You never know when a new, promising treatment will be found. It sucks right now, but help your daughter to be a fighter.

I wish you and your family nothing but the best at this trying time. Don't be afraid to ask people for help or to just listen as you cry on their shoulders. Take care.

rosehilldreamer
Posts: 7
Joined: Jun 2012

my sister tracey is 42. she has stage 4. it originated as a large tumor hiding behind her organs towards her back. she went through physical therapy, mri and it took them a year to diagnose. it had spread to her lungs and liver. my sister was overweight most of her life. Before the diagnosis she had a lot of weight and was in the best shape of her life. she has ryan and emily my 2 year nephew and niece which she conceive through 3 X invitro fertilization. no explanation for this rare cancer that only 4 in 1,000,000 get. she has had chemo for a year now. she has no quality of life. it is so sad seeing her with the kids knowing that she may not be here for them as they grow. i am up here in ny visiting her from florida. i am very sad and depressed.i could use some support. i have no friends. although i am a great person. please help

patriar
Posts: 5
Joined: Nov 2012

Hello Red Hot Nana,
My name is Patria and I just read your post. In June of this year, I was diagnosed with LMS in my upper left thigh. As scared as I was, I knew that I had to hand this over to my creator. While I find many posts/blogs of LMS, until your post, I haven't found anyone else that has had LMS in their thigh. My doctor told me that orthopedic lms is found in only approximately 1 in a million. I've always considered myself to be unique - haha! I would love to share anything that I can with you on my journey, thus far. I have had chemo, surgery (with successful negative margins) Yay! and now am going through radiation with at least 2 more chemo's scheduled after radiation.

I will be praying for your husband and hope that his treatment is going well. Many blessings!

rosehilldreamer
Posts: 7
Joined: Jun 2012

my sister tracey is 42. she has stage 4. it originated as a large tumor hiding behind her organs towards her back. she went through physical therapy, mri and it took them a year to diagnose. it had spread to her lungs and liver. my sister was overweight most of her life. Before the diagnosis she had a lot of weight and was in the best shape of her life. she has ryan and emily my 2 year nephew and niece which she conceive through 3 X invitro fertilization. no explanation for this rare cancer that only 4 in 1,000,000 get. she has had chemo for a year now. she has no quality of life. it is so sad seeing her with the kids knowing that she may not be here for them as they grow. i am up here in ny visiting her from florida. i am very sad and depressed.i could use some support. i have no friends. although i am a great person. please help

rosehilldreamer
Posts: 7
Joined: Jun 2012

she had lost a lot of weight was what i meant to say

DJK
Posts: 4
Joined: Jul 2010

I was diagnosed in July 2012 of LMS left kidney. Last week I had a biopsy on the top of my head. It came back possitive for LMS. I was told it is probly only on the surface layers. I go back next week to have the rest cut out. I live in Florida and have not come across anyone else with LMS here. I go to a support womens group and they are all wonderful. We get to learn about other cancers and get support for for ours. It is a great help. We also have family members of cancer patient that are in other states that come just to get info and support.

tinsrod
Posts: 1
Joined: Nov 2012

I was diagnosed last sept 2012... I will start my chemo next week for 5-6 months ..hope everything will be ok...that I can survive this crisis...and live a normal life again...Im searching for someone who has similar case as me..so i have an idea on the things to expect...

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