Just Got the News - Leiomyosacroma

sandy1962
sandy1962 Member Posts: 9
edited March 2014 in Sarcoma #1
I'm a healthy 48 year old woman who went for a routine hysterectomy (needed beacuse of fibriods and heavy bleeding) and came out with a live changing diaginosis of Leoimyosarcoma. The mass was removed during surgery, however, the GYN thought it was fine. The mass was 16cm in size and the pathology report said is was low grade. The GYN said it was "easy" to remove (not attached to anything). From my reading this means nothing. I have known this since Thursday (5 days ago) and have spent a ton of time on the internet researching. I found this site and read through some of the comments. Needless to say, I am terrified. I go to my First oncologist appointment this Friday. Any insight is welcomed.

Comments

  • dodot
    dodot Member Posts: 14
    #2
    hello
    Hello Sandy,
    My name is Kendall and I am sorry for the news. My wife Robin whom is 40yrs old has been fighting this exact same type Cancer. I will pray for you and your family that evrything was sucessful and you recieve good news at your appointment. I am very verst in this disease, we have been fighting since 2005 and would be happy to talk with you. God Bless. Where are you from.
  • mb112660
    mb112660 Member Posts: 8
    #3
    Hi Sandy! I also was just diagnosed with this rare disease in much the same way as you(routine hysterectomy) and am looking for ANY information and support.I have been searching the internet and there doesnt seem to be much information on LMS.If you wouldnt mind sharing any info that comes your way.Let us know what your first visit turns up.At my first visit the doctor recommended RT(radiation therapy,then possible follow up with chemo.I see the radiologist oncologist this week to set up the game plan.I am so uncertain if I want to follow this treatment plan.I would love some input from others about their treatment.Also, I have had a nagging feeling that I should seek out a sarcoma center and not just continue with regular oncologists. Any thoughts on this? I will be praying for you.
  • mb112660
    mb112660 Member Posts: 8
    #4
    dodot said:

    hello
    Hello Sandy,
    My name is Kendall and I am sorry for the news. My wife Robin whom is 40yrs old has been fighting this exact same type Cancer. I will pray for you and your family that evrything was sucessful and you recieve good news at your appointment. I am very verst in this disease, we have been fighting since 2005 and would be happy to talk with you. God Bless. Where are you from.

    Hello Kendall. How is Robin doing? I am newely diagnosed and would so appreciate any information about this disease,including treatment plans your wife has had or is currently undergoing.Is she currently connected with a Sarcoma center? I will add you and Robin to my prayers.Thank you!
  • Balbarra
    Balbarra Member Posts: 1
    #5
    Im a serviver
    HI Sandy, as one of the rare males about 4 in a million to contract this rare cancer i can tell you that if your going to get cancer its one of the better ones to get as it is purely a soft tissue cancer.
    I found out I had it in Sept 2007 and had radiation treatment for 9 weeks, which i servived, only to wind up in hospital for 3 weeks after my skin went to peicses as i had to have higher dosages because of where I had my cancer. I have been clear of the cancer for 3 years now and my last scans done 3 weeks ago are all clear again.
    Yes its scarry to hear that word cancer but you have to just accept it and get on with living and do as your doctors tell you.
    I only had radiation treatment as my Oncologists here in Australia said chemo doesnt work with this cancer.
    I wish you luck and remember dont be afraid always be posative and remember its up to you to fight it, so long as you have your family and friends behind you you will win.

    Regards Jeff
  • dodot
    dodot Member Posts: 14
    #6
    mb112660 said:

    Hello Kendall. How is Robin doing? I am newely diagnosed and would so appreciate any information about this disease,including treatment plans your wife has had or is currently undergoing.Is she currently connected with a Sarcoma center? I will add you and Robin to my prayers.Thank you!

    hang in there
    Hello Mb,
    Hope all is well with you. My wife has stage 4 Leiomyosarcoma in lung, spine, liver. We have had a really hard time with the disease. It is truley a battle. With Gods help we will overcome and be blessed with a miracle. We are currently under treatment with Gimzar and Taxiter. These are some good Chemos and they have shrunk the tumors alot but they have came to a stopping point and will not decrease anymore. I am my wifes Caregiver and love her very very much and will do whatever i can to overcome this disease. I have done alot of research on this disease and have talked to alot of experienced people in fighting Sarcomas. My personal email is ksodders@jlroberts.com please feel free to use it. Most Oncologist will not tell u a simple fact and the reason they will not is they are only educated in the conventional methods of treatment. I talked to a lady in Texas that went to MD Anderson and was diagnosed with Sarcoma and was told that she would die in 2 months. This lady has got me set up for my wife with a Dr. Morreale in Tampa Florida whom fights the disease thru Immune System boosters and Vitamin regiments and Diet. Beleive me there is something to this. We are scheduled for the second week of January. This lady went and done this protocal and returned to MD Anderson for another scan and they were shocked to find no Cancer in her body. Sugar fuels Cancer. You hear that alot and it is true. Think about it when a chicken is born and in 3 weeks u are eating it something is wrong with that picture. Look up a product on the web called Immunocal. This is a great product. I may be crazy but we have done all types of Chemo and Radiation and my wife was getting worse. We will still do what doctors say but will also go this route aswell. Im not dis-couraging you from anything but will like to share this with who wants it. I will pray for you and please do us. Keep in touch and God Bless....
  • sandy1962
    sandy1962 Member Posts: 9
    #7
    dodot said:

    hello
    Hello Sandy,
    My name is Kendall and I am sorry for the news. My wife Robin whom is 40yrs old has been fighting this exact same type Cancer. I will pray for you and your family that evrything was sucessful and you recieve good news at your appointment. I am very verst in this disease, we have been fighting since 2005 and would be happy to talk with you. God Bless. Where are you from.

    Thanks
    Thanks for the response. My appointment did go well, however, I still have a lot of questions and concerns. The first thing the oncologist ordered was a CT scan. The results from the CT scan showed no metatisis (thank God). When I returned for my follow up appointment he suggested we do nothing and wait until it returned. He ordered additional scans for every 6 months. Even though this was great news, I am going for a 2nd opinion at MD Anderson in Houston. I want to believe my oncologist, however, with the rarity of the disease, I want to be sure this is the right course of treatment. I have read your later post and will be praying for you and your wife. I know that God answers prayers, sometimes it just not the way we want. We may not understand His plans but I do know he is in control. God Bless
  • sandy1962
    sandy1962 Member Posts: 9
    #8
    mb112660 said:

    Hi Sandy! I also was just diagnosed with this rare disease in much the same way as you(routine hysterectomy) and am looking for ANY information and support.I have been searching the internet and there doesnt seem to be much information on LMS.If you wouldnt mind sharing any info that comes your way.Let us know what your first visit turns up.At my first visit the doctor recommended RT(radiation therapy,then possible follow up with chemo.I see the radiologist oncologist this week to set up the game plan.I am so uncertain if I want to follow this treatment plan.I would love some input from others about their treatment.Also, I have had a nagging feeling that I should seek out a sarcoma center and not just continue with regular oncologists. Any thoughts on this? I will be praying for you.

    Hello
    I know your confusion and terror. I would suggest a 2nd opinion. I am sending all of my records to MD Anderson in Houston. THey offer 2nd opinion pathology services. My visit ended in great news, however, even though my doctor says he has treated leiomysarcoma patients before, I sure he has not treated the level of patients that MD Anderson has. Google thier coupled with 2nd opinion and you can get the details and forms needed. I'll be praying for you.
  • 4girls4me
    4girls4me Member Posts: 4
    #9
    Thinking about you.
    Hi Sandy1962. I am 41 and was diagnosed with a high grade stage 2 LMS (intravascular) in a vein in my right hand after a simple in office procedure to remove a small painless lump 3/16/2010. I have undergone radiation and more surgery and extensive therapy to regain function in my hand and had my first 3 month CT Scan which was clear of any metastasis. I spent many many sleepless nights on the Internet trying to find someone like me but always fell short. I am trying to live life to the fullest everyday and trying not to think about what could be on the next scans. One day at a time...
    I fought hard to believe in myself that I could fight this and win, and I will never give up.
    I am under the care of an excellent Orthopedic Sarcoma specialist at Mass General in Boston and arm myself with questions before every visit.
    Just remember you are not alone... Sending prayers and well wishes your way!
  • dodot
    dodot Member Posts: 14
    #10
    mb112660 said:

    Hello Kendall. How is Robin doing? I am newely diagnosed and would so appreciate any information about this disease,including treatment plans your wife has had or is currently undergoing.Is she currently connected with a Sarcoma center? I will add you and Robin to my prayers.Thank you!

    hello mb
    she is not doing good at all. in alot of pain. i hate to see her suffer like she is. I hope u are doing well. email me at ksodders@jlroberts.com i would like to stay in touch. God Bless and pray for us.

    Dodot
  • 2taikomom
    2taikomom Member Posts: 4
    #11
    Leiomyosarcoma Resources & Help
    Hi - We have about 500 leiomyosarcoma (LMS) families on the ACOR online group. You will find a lot of medical help & support there!

    ACOR L-M-Sarcoma
    http://listserv.acor.org/archives/l-m-sarcoma.html

    I also write LMSeAlerts to keep everyone updated on the latest LMS research and news. It is an announcement only service, not a discussion group. Join here:
    LMSeAlerts News Bulletin: http://health.groups.yahoo.com/group/LMSeAlerts/

    See my other LMS groups & resources below.


    Sending hugs,

    Sharon in San Francisco
    http://www.themonthly.com/feature1011.html

    "Working not Wishing" www.LMSdr.org
    LMSeAlerts News Bulletin: http://health.groups.yahoo.com/group/LMSeAlerts/
    ULMS & Hormones Study Group:
    http://health.groups.yahoo.com/group/ULMS-HormoneTherapy/

    1/2002 dx ULMS (fibroid) MI 10/10 hpf, high grade
    6/2002 hysterectomy, left one ovary.
    1/2003 1 L lung met removed by VATS
    9/2003 ovary removed after tumor tested 99% Er and Pr positive
    1/2004 vaccine trial at Dana Farber - didn't work
    5/2004 1 met in chest lymph node & 1 met in L lung removed by thoracotomy
    5/2004 started Arimidex (AI) for 99% estrogen & progesterone receptors
    NED ever since! (no evidence of disease)

    No chemo, No radiation, No angiogenesis inhibitors so far.
    Just 3 surgeries & an aromatase inhibitor (AI) estrogen blocker, Arimidex.
    NED since 5/2004 - since taking the AI.
    Fingers crossed!
    .......................................
  • sandy1962
    sandy1962 Member Posts: 9
    #12
    4girls4me said:

    Thinking about you.
    Hi Sandy1962. I am 41 and was diagnosed with a high grade stage 2 LMS (intravascular) in a vein in my right hand after a simple in office procedure to remove a small painless lump 3/16/2010. I have undergone radiation and more surgery and extensive therapy to regain function in my hand and had my first 3 month CT Scan which was clear of any metastasis. I spent many many sleepless nights on the Internet trying to find someone like me but always fell short. I am trying to live life to the fullest everyday and trying not to think about what could be on the next scans. One day at a time...
    I fought hard to believe in myself that I could fight this and win, and I will never give up.
    I am under the care of an excellent Orthopedic Sarcoma specialist at Mass General in Boston and arm myself with questions before every visit.
    Just remember you are not alone... Sending prayers and well wishes your way!

    Thank you
    Thank you for the words of encouragement. I have my 2nd scan early April. As the date approaches - the more terror I feel. I have a deep faith in God and know that He is always in control, however, I am human and fear at times takes over. I'll remember you and please stay in touch. As with you...I WILL NEVER GIVE UP.
  • Londoner
    Londoner Member Posts: 1
    #13
    sandy1962 said:

    Thank you
    Thank you for the words of encouragement. I have my 2nd scan early April. As the date approaches - the more terror I feel. I have a deep faith in God and know that He is always in control, however, I am human and fear at times takes over. I'll remember you and please stay in touch. As with you...I WILL NEVER GIVE UP.

    In the same boat as you
    Hi Sandy, I also was diagnosed with uterine LMS after a hysterectomy for "fibroids". I'm 54 and suffered horrendous bleeding and abdominal pain for 9 months, the first gyne I saw said it was just the menopause and "get on with it". Had an endometrial biopsy which was clear, and they put a Mirena coil in to help stop the bleeding - which it did for a short while, then it all started up again. Saw a second gyne, who did an MRI scan but she failed to spot that the "fibroid" had increased in size from 9cm in June 2010 to 13.5cm in November 2010. The MRI showed signs of severe degeneration of the "fibroid", but this wasn't attributed to leiomyosarcoma. Big mistake! I waited another 3 months to have the hysterectomy (done in Feb 2011), and high-grade ULMS was detected in the pathology.

    Had my first CT scan 3rd March, it shows some nodules in my lungs that the specialist "doesn't like the look of", so now waiting for the second CT scan to see if they've grown or whatever - another 3 weeks to go. I know the fear you're feeling, but you're right to say NEVER GIVE UP. My second cousin has had the same disease for 18 years, never had chemo or radiotherapy although she's had 4 surgeries, and she's still going strong.

    God sends us challenges that He thinks we can cope with, and this is for sure the biggest challenge I've ever faced. For now, I take each day as it comes, I try not to think about what the future might hold: after all, none of us, healthy or not, know what's around the corner for us, so I reason that I may as well just get on with my life even with this thing hanging over me. Of course, every twinge and ache makes me wonder "what if it's the cancer", but I try to push those thoughts out of my mind.

    Hopefully, both of us will have good results from our next CT scans.

    God bless and take care xxx
  • katmena
    katmena Member Posts: 2
    #14
    My mother had the same thing
    My mother had the same thing happen to her, heavy bleeding from what the doctors thought were fibroids. Her doctor did a D and C in surgery before the hysterectomy and found what was suspicious of cancer. They did the hysterectomy and the doctor seemed hopeful that there was no sign of metastasis, and her lymph nodes were clear. The pathology report showed Leiomyosarcoma. But, at her 3 month scan we were shocked to find out that there were 3 tumors suspicious of metastasis attached to the soft tissue in her abdominal and pelvic cavity. She has been on 1 round of chemo, and her 4 month scan showed no change so she started her second round last week. She is taking docetaxil and gemcitabine.
  • sandy1962
    sandy1962 Member Posts: 9
    #15
    Londoner said:

    In the same boat as you
    Hi Sandy, I also was diagnosed with uterine LMS after a hysterectomy for "fibroids". I'm 54 and suffered horrendous bleeding and abdominal pain for 9 months, the first gyne I saw said it was just the menopause and "get on with it". Had an endometrial biopsy which was clear, and they put a Mirena coil in to help stop the bleeding - which it did for a short while, then it all started up again. Saw a second gyne, who did an MRI scan but she failed to spot that the "fibroid" had increased in size from 9cm in June 2010 to 13.5cm in November 2010. The MRI showed signs of severe degeneration of the "fibroid", but this wasn't attributed to leiomyosarcoma. Big mistake! I waited another 3 months to have the hysterectomy (done in Feb 2011), and high-grade ULMS was detected in the pathology.

    Had my first CT scan 3rd March, it shows some nodules in my lungs that the specialist "doesn't like the look of", so now waiting for the second CT scan to see if they've grown or whatever - another 3 weeks to go. I know the fear you're feeling, but you're right to say NEVER GIVE UP. My second cousin has had the same disease for 18 years, never had chemo or radiotherapy although she's had 4 surgeries, and she's still going strong.

    God sends us challenges that He thinks we can cope with, and this is for sure the biggest challenge I've ever faced. For now, I take each day as it comes, I try not to think about what the future might hold: after all, none of us, healthy or not, know what's around the corner for us, so I reason that I may as well just get on with my life even with this thing hanging over me. Of course, every twinge and ache makes me wonder "what if it's the cancer", but I try to push those thoughts out of my mind.

    Hopefully, both of us will have good results from our next CT scans.

    God bless and take care xxx

    As the date approaches....
    One week from today I go for my 1st scan after being diagnosed. I have felt every small pain my body has and I too fear it is the cancer. I really feel the best I have felt in years, however, this could be a false sense of security. May God bless you also. Let's try to stay in touch as we both fight the fear and the disease.
  • sandy1962
    sandy1962 Member Posts: 9
    #16
    sandy1962 said:

    As the date approaches....
    One week from today I go for my 1st scan after being diagnosed. I have felt every small pain my body has and I too fear it is the cancer. I really feel the best I have felt in years, however, this could be a false sense of security. May God bless you also. Let's try to stay in touch as we both fight the fear and the disease.

    Scan Results
    The results from my 3 month Scan was clear (thank GOD). I go for my next Scan in 3 months. I'll continue to pray for my friends on ths site as I hope you will me.

    1 Peter 5:7 was part of my devotional this morning
    "Cast your cares on Him, for He cares for you".

    I give this disease to God.
  • sandy1962
    sandy1962 Member Posts: 9
    #17
    sandy1962 said:

    As the date approaches....
    One week from today I go for my 1st scan after being diagnosed. I have felt every small pain my body has and I too fear it is the cancer. I really feel the best I have felt in years, however, this could be a false sense of security. May God bless you also. Let's try to stay in touch as we both fight the fear and the disease.

    Next Scan is Approaching
    July 11th will be my next scan. I am terrified. I am having pains in my pelvic area. Not sure if they are true pains or my imagination. My Dad had a stroke 3 weeks ago and needless to say that also has put a lot of stress in my life. My faith is in God. My prayer is he heals my body and my Dad. I have read so many people who have gone months with no metatisis and then all the sudden it apprears. Dreading the day.
  • koda66
    koda66 Member Posts: 1
    #18
    sandy1962 said:

    Thanks
    Thanks for the response. My appointment did go well, however, I still have a lot of questions and concerns. The first thing the oncologist ordered was a CT scan. The results from the CT scan showed no metatisis (thank God). When I returned for my follow up appointment he suggested we do nothing and wait until it returned. He ordered additional scans for every 6 months. Even though this was great news, I am going for a 2nd opinion at MD Anderson in Houston. I want to believe my oncologist, however, with the rarity of the disease, I want to be sure this is the right course of treatment. I have read your later post and will be praying for you and your wife. I know that God answers prayers, sometimes it just not the way we want. We may not understand His plans but I do know he is in control. God Bless

    Hello Sandy
    I am 45 yrs
    Hello Sandy
    I am 45 yrs woman from Finland.
    I get my bad news on january 2011 after normally hysterctomy and heavy bleedings.
    In ultrasaound before the surgery there were myoma ( this was the part the leyomysarcoma were)

    I had ct scan in january and it was clear, no metatisis .
    I have doctor appoinment every 3 months next one is 22.09 .
    It is very difficult to get any information about this LMS so this leaves you with lot of questions and concerns....
    If you want you can e-mail me directly and we can switch our stories they seem to be similar in many ways.
  • sandy1962
    sandy1962 Member Posts: 9
    #19
    koda66 said:

    Hello Sandy
    I am 45 yrs
    Hello Sandy
    I am 45 yrs woman from Finland.
    I get my bad news on january 2011 after normally hysterctomy and heavy bleedings.
    In ultrasaound before the surgery there were myoma ( this was the part the leyomysarcoma were)

    I had ct scan in january and it was clear, no metatisis .
    I have doctor appoinment every 3 months next one is 22.09 .
    It is very difficult to get any information about this LMS so this leaves you with lot of questions and concerns....
    If you want you can e-mail me directly and we can switch our stories they seem to be similar in many ways.

    Leiomyosarcoma
    I am heading for my 3rd scan since diagnosis next week. I have had a great summer with my family. Every time I get ready to go I am fearful. I have read about so many people who have gone for months without any signs of metastasis and then one day "BOOM" the cancer reoccurs. My prayers are with you (and me). They only thing I am doing right now is every 3 month scans. I don't mind the scans at all; I just dread the sleepless nights.

    May God be with us both.
  • vic8
    vic8 Member Posts: 2
    #20
    katmena said:

    My mother had the same thing
    My mother had the same thing happen to her, heavy bleeding from what the doctors thought were fibroids. Her doctor did a D and C in surgery before the hysterectomy and found what was suspicious of cancer. They did the hysterectomy and the doctor seemed hopeful that there was no sign of metastasis, and her lymph nodes were clear. The pathology report showed Leiomyosarcoma. But, at her 3 month scan we were shocked to find out that there were 3 tumors suspicious of metastasis attached to the soft tissue in her abdominal and pelvic cavity. She has been on 1 round of chemo, and her 4 month scan showed no change so she started her second round last week. She is taking docetaxil and gemcitabine.

    I also have the same thing
    My tumors have come back after a hysterectomy It's in my abominal cavity and small grape size in my left lung. Im starting the same chemo your mom is on as a clinical trial with a side of Bevacizumab Have you heard of any good things about this? I am so afraid because of the side effects.

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