leiomyosarcoma spread to lungs

Hi everyone, My wife has had a leiomyosarcoma spread to her lungs, small nodules to both lungs.  our doctor at M.D. Anderson wants to wait for 6 weeks to test again and see how fast the cancer is growing than treat her with chemo.  The tumor that was removed 2 years ago was suppose to be High-grade 10cm by 13cm.  Is there anyone going thru something simular??

gee

Hi,

I am a leiomyosarcoma patient myself. I don't have any mets to the lungs, but I was wondering of you were aware of the leiomyosarcoma listerve. It's a rare cancer, so it can be helpful to have a more specific list. Just in case you're interested, the link to subscribe is:

http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=l-m-sarc

On 2/28/2008 hubby wrote:

Hi everyone, My wife has had a leiomyosarcoma spread to her lungs, small nodules to both lungs.  our doctor at M.D. Anderson wants to wait for 6 weeks to test again and see how fast the cancer is growing than treat her with chemo.  The tumor that was removed 2 years ago was suppose to be High-grade 10cm by 13cm.  Is there anyone going thru something simular??

gee

I have had ULMS spread to the lungs and have had 2 surgeries, and 2 RFA's (Radio Frequency Ablation's).  I still have more now, but are too small to surgically remove or to use RFA.  For me, I would always opt for the surgical option, as it is the best and really only way to get rid of the tumors.  However, I am very aggressive in my treatment.  But, I am still here...nearly 15 years.  I would want to know how big the tumors are, where they are located, and how they are going to take them out.  My second surgery, it was minimally invasive and done through my side.   In my experience, it has been me that has pushed early on to have the tumors removed as opposed to watching them.   Of course, it depends on the person's health, etc.  It is so hard to know what to do.  I am my own manager and it is so daunting and scary.  With such a rare and complicated disease, I rely on my own instincts and the care and guidance of my doctors'.  Good luck.

Hi I have just been told I have leiomyosarcoma in both lungs and in the skin on my head. Orginally I had it three and half years ago in my uterus. My treatment in Swansea has been terrible as no one seemed to know what to do with me. I have just visit the Royal Masden in london and feel much happier. I am going to have 2 lots of chemo followed by a scan to see if chemo is working on the cancer. Hope every thing goes well for your wife

Regards

Anne

hi

 i am 32 yrs old and had my 3rd baby in feb 2008, in april i had my monthly cycle and started bleeding very heavily. i was admitted into hospital, given a blood transfusion and sent home with medication. then in may my period started as usual and then the extreme heavy bleeding again, this time the gynae decided to try and operate. i had a fibroid that they were aware of that was not a problem in my 3 pregnancies. he tried to remove the fibroid and used a camera to see what was going on. he also took some tissues from the fibroid too. next month i was called in and told the tissues were suspicious and they thought it maybe leiomyosarcoma. a hysterectomy was performed within the week. total hysterectomy was done and i was told it was actually leiomyosarcoma but it hadnt spread out the uterus. i was told a routine ct scan would be done. i went in to have this done and have today been told that nothing has spread to the blood and all seems ok apart from a small 6mm nodule on right lung. they dont know what it is and it may be scarring from a chest infection i may have had years ago. they think best to operate and remove from the lungs. what do you think i should do, should i seek a 2nd opinion. i took out private health care a few months ago. the hospital i had the operation at carried out the ct scan as a routine check and are not sure if this is connected or something completely irrelevant. would this be covered privately or classed as pre existing?? i am so confusedf and so worried!!

On 9/9/2008 dee g wrote:

hi

 i am 32 yrs old and had my 3rd baby in feb 2008, in april i had my monthly cycle and started bleeding very heavily. i was admitted into hospital, given a blood transfusion and sent home with medication. then in may my period started as usual and then the extreme heavy bleeding again, this time the gynae decided to try and operate. i had a fibroid that they were aware of that was not a problem in my 3 pregnancies. he tried to remove the fibroid and used a camera to see what was going on. he also took some tissues from the fibroid too. next month i was called in and told the tissues were suspicious and they thought it maybe leiomyosarcoma. a hysterectomy was performed within the week. total hysterectomy was done and i was told it was actually leiomyosarcoma but it hadnt spread out the uterus. i was told a routine ct scan would be done. i went in to have this done and have today been told that nothing has spread to the blood and all seems ok apart from a small 6mm nodule on right lung. they dont know what it is and it may be scarring from a chest infection i may have had years ago. they think best to operate and remove from the lungs. what do you think i should do, should i seek a 2nd opinion. i took out private health care a few months ago. the hospital i had the operation at carried out the ct scan as a routine check and are not sure if this is connected or something completely irrelevant. would this be covered privately or classed as pre existing?? i am so confusedf and so worried!!

I am so sorry for your diagnosis.  It is very scary, I know.  With regard to your lung nodule, I would defintely operate and take it out.  They should also check very carefully to see if there are any others that do not show up on the CT.  The lungs are the first place that ulms usually recurs, and I agree with your doctor that they should operate.  Where are you?  Is this a thoracic surgeon that would be doing the surgery?  Are they talking minimally invasive surgery?  There are different types of lung surgery depending on size and location of the nodules.  Please let me know if you have any questions..

On 9/14/2008 warrior1 wrote:

 

On 9/9/2008 dee g wrote:

hi

 i am 32 yrs old and had my 3rd baby in feb 2008, in april i had my monthly cycle and started bleeding very heavily. i was admitted into hospital, given a blood transfusion and sent home with medication. then in may my period started as usual and then the extreme heavy bleeding again, this time the gynae decided to try and operate. i had a fibroid that they were aware of that was not a problem in my 3 pregnancies. he tried to remove the fibroid and used a camera to see what was going on. he also took some tissues from the fibroid too. next month i was called in and told the tissues were suspicious and they thought it maybe leiomyosarcoma. a hysterectomy was performed within the week. total hysterectomy was done and i was told it was actually leiomyosarcoma but it hadnt spread out the uterus. i was told a routine ct scan would be done. i went in to have this done and have today been told that nothing has spread to the blood and all seems ok apart from a small 6mm nodule on right lung. they dont know what it is and it may be scarring from a chest infection i may have had years ago. they think best to operate and remove from the lungs. what do you think i should do, should i seek a 2nd opinion. i took out private health care a few months ago. the hospital i had the operation at carried out the ct scan as a routine check and are not sure if this is connected or something completely irrelevant. would this be covered privately or classed as pre existing?? i am so confusedf and so worried!!

I am so sorry for your diagnosis.  It is very scary, I know.  With regard to your lung nodule, I would defintely operate and take it out.  They should also check very carefully to see if there are any others that do not show up on the CT.  The lungs are the first place that ulms usually recurs, and I agree with your doctor that they should operate.  Where are you?  Is this a thoracic surgeon that would be doing the surgery?  Are they talking minimally invasive surgery?  There are different types of lung surgery depending on size and location of the nodules.  Please let me know if you have any questions..

Hi i appreciate your reply greatly...

my consultant is referring me to a cardiothoracic surgeon at newcross, wolverhampton. I have not had any response from the surgeon yet. So i dont know how serious this is?? If it was life threatening would they be operating immediately?? I am still waiting for the private plan insurers to advise if they will cover me as i dont feel this is pre-existing as i only found out about it a few weeks ago. My consultant tried to tell me that its probably not linked to the leimyosarcoma and that it may be an old scar from an old chest infection. What is the likelihood that its linked... my blood was clear and the lymph nodes too?  Can it be in my lungs... they said it was 6mm and they cant just test it as they might miss so they want to remove it.... i dont know what to do. What is the chance that they remove it and it comes back somewhere else? they said it was completely removed from the uterus.. i am so scared about what might happen next.... i would be grateful if anyone can advise.. thanks