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Undiff Pleomorphic Sarcoma (thigh)

wifeofUPS
Posts: 9
Joined: Dec 2016

My husband was recently diagnosed with undifferentiated pleomorphic sarcoma. In brief, he had a tiny hard bump on his outer thigh that he just noticed one day. Then after about 4 months it became more noticeable and kind of painful. Within the next two months it really grew fast, was obviously larger, tender to touch and very painful. He had surgery to remove a misdiagnosed lipoma. Biopsy resulted in undifferentiated pleomorphic sarcoma with positive margins. A cancer clean out surgery was performed leaving an open wound (wound vac for several weeks) to heal before 7 weeks of radiation can be done (scheduled for 02-2017). His tumor was high grade 3, Stage IIa, 5.1cm subcutaneous tumor. (It had not gone into his muscle or bone, they removed all his tissue including the sheath just before his muscle).  

It doesnt show to have metastasized but my additional concerns and now questions from reviewing his first MRI and CT scans (taken between the two surgeries) are that there is a 2.3cm low-attenuation small nodule in the right lobe of his thyroid gland (which I have read are low % of being cancer) and subtle ground-glass opacity in the base of his left lung (definitely worrisome).  

Now just in search of information to help educate, prepare, plan and know what to expect as treatment continues. Have loads of questions for the doctor at next visit. still waiting for his wound to completely close so he can begin radiation. Then will be very anxious to get first CLEAR scans...and in hopes that it will stay clean and clear! Hopes, prayers and wishes for all going through the cancer scare.

Buddyjkl
Posts: 3
Joined: Oct 2016

Hi my Husband was diagnosed in April 2016 with Pleomorphic Liposarcoma High Grade,stage III, 11cm Tumour in his right thigh, he had 25 sessions of Radiotherapy and 3 Cycles of Chemo and surgery to remove tumour was in August 2016, he had further surgery due to complications with healing and a VAC dressing applied on 26/09/2016, he has moved to a dry dressing just today :-)  He has had clear chest CT and clear MRI of the leg in December and he is doing good now, i my Husband was diagnosed in April 2016 with Pleomorphic Liposarcoma High Grade,stage III, 11cm Tumour in his right thigh, he had 25 sessions of Radiotherapy and 3 Cycles of Chemo and surgery to remove tumour was in August 2016, he had further surgery due to complications with healing and a VAC dressing applied on 26/09/2016, he has moved to a dry dressing just today :-)  He has had clear chest CT and clear MRI of the leg in December and he is doing good now, I am so anxious it will reoccur/metastasise, I hope your husband is doing ok xx

wifeofUPS
Posts: 9
Joined: Dec 2016

Hi Buddyjkl,

I hope things are still going good. Are the dressings getting easier and things healing quickly?  I will keep praying for good results, health and strength for us all!

We will be going for our first scans since the clean out surgery tomorrow.  Then the following week he will start localized radation, 35 sessions.

Just sending you well wishes...

 

wifeofUPS
Posts: 9
Joined: Dec 2016

that is great news! Glad to hear he had clear scans and removing the vac is almost like freedom! My husband only had it for about 3 weeks but it was a bit much to carry around and go places.  I almost gave up trying to find others with similar diagnoses.  I just happened to check back in. the news on your husband sounds very encouraging! I believe that is our scare too, the waiting and anticipation that this will come back. I am the optimistic one, but I also know the reality is that it is very aggressive. So I do still worry. 

the doctors have only recommended radiation at this point for my husband. I am hoping they don't recommend chemo, for one, it can be so hard on the body and I just don't know how my husband would handle it. And two, I have read so much about it not having any effect on sarcomas.  If it ever comes to it we will cross that bridge and obviously consider it. did it do the job the doctors expected it to for your husband's case?

of course my husband's surgery was before the radiation because it was misdiagnosed and thought to be just a non-cancerous fatty tumor. Then he had to have the bigger cut to get clean margins. And now his wound  very small but still not closed up. Since his scans were clear in October, I assume theybdont feel chemo is necessary. And only radiation to make sure they zap any microscopic cancer cells from his leg area. 

It is mid January, I would like for him to have images every three months just for my peace of mind...he feels the same. I hope you (your husband) continue to have clear scans and good news. I will check back often, so please keep me posted!

 

asskicker
Posts: 2
Joined: Feb 2017

My husband is in a similar situation as yours. We just got home from Duke University last night from having his gluteus maximus muscle removed from his left side. It is the same side he had an above knee amputation 19 yrs ago after a hunting accident. His first chest scans showed 3 very small areas that could be from smoking for 30 years... they will recheck every 3 months for the first 2 years. We are waiting for the pathology report to make sure there were clean margins. 

A very large and painful tumor grew very quickly inside his glute. His pain level has dropped immensely since the tumor was removed, Thank God! But, because of where it was he is having issues of sitting and he cannot wear his prosthesis until he is refitted and a new socket is made. That may take several months, if not longer. It would be wonderful if we could stay in touch with each other since it seems we are on a similar journey.

Buddyjkl
Posts: 3
Joined: Oct 2016

Sorry only seeing these messages now, hubby is doing good, VAC dressing eventually came off in January and he has had clean scans so far, his latest chest CT results due in two days, hopefully still clean, trying to get on with life as we know it now!! 

carolann710
Posts: 8
Joined: Oct 2017

Buddyjkl

How is your husband ?

 

carolann710
Posts: 8
Joined: Oct 2017

Just diagnosed with liposarcome high grade.......sugery ...she said she got it all with clean margins....still healing ...going for ct scan today.....im terrified to the point i cant sleep or function.  I fell a year ago and was told it was a hematoma......it got bigger ...is subcutaneous ......i have myself dead.....im in agony........I have an adult retarded son dependent on me.....and dont know where to go or what to do.  I am in michigan....after the ct scan said hematoma...my dr. said let it go unless its causing pain......i was in lots of pain so she sent me to an ortho surgeron...who sent me for an mri ...that showed sarcoma.......he sent me to an oncology ortho surgeon......they didnt tell me sarcoma before this apt...so i dint get to pick a "sarcoma " clinic.........I told her to take it out and the next day she did.......now she says radiation after my surgery heals..........however........no other dr. or anything....i feel alone and lost......she didnt tellme the tumor name ..just high grade......i dont know what to do cant find many survirors.....or maybe they juist dont post.....

Aintgoneyet
Posts: 3
Joined: Nov 2017

I am glad to see a message board specific to the cancer I had. Many, many sad and scary stories though. I am only 1 year into this. I had a myxoid pleomorphic sarcoma removed from my leg (shin area) December 2016. I have had 1 or 2 follow up MRIs of my leg and they have been clear. I have had several chest CTs. There were small nodules in my first chest CT and they never grew. Those first couiple of chest CTs were so scary. I have never had so much anxiety in my life. I have 3 children. that doesnt mean I am more important, just more people to worrry about of course. I am due for another MRI and chest CT now. I have been procrastinating setting up the appointments. Friday is my 1 year anniversary since the diagnosis. When I first discovered the tumor, it seemed so sudden, that I thought it was a spider bite. I work in a physicians office and had 2 MDs tell me tha tI had nothing to worry abuot, so I kept puting off making the appointment.  It took me almost 6 months to get in to see my primary. She assured me that it was probably a lipoma but send me for a U/S anyway. That came back questionable. So then they did a MRI. That also turned out to be questionable. Stll , the Drs were not overly concerned. I went in for a surgery consult. I didnt want a ugly lump on my leg either way. The day before thanksgiving last year, the surgeon told my husband and I that there was only a 5 % chance that the lump would be malignant. I had it removed on December 1st 2016 and was diagnosed with my sarcoma that day. We told our children a few days later. I think that was the most horrible conversation we ever had to have. This all followed with a few weeks of daily localized radiation on my leg. Fortunately, I was referred to a sarcome specialist that has years of experience with this type of cancer. It was fairly small (it seemed huge to me at the time) but ended up being a under 4cm. So, now I am a year into it and doing very well. My leg is uglier than I would like, but I am not a bikini person anymore anyway.. so thats ok. I have about a 11 or 12 inch scar and the front of my leg is a little red from the raditaion, but it doesnt bother me. I wish I would have done physical therapy to work out the scar tissue because that is a bit of a pain. I dont have exactly the same movement in that leg. But it is a very small price to pay. I hope I will remember to come back here a year from now and have all positive results still. I think I will. I wish you all the best. 

Buddyjkl
Posts: 3
Joined: Oct 2016

Hi all, 

Sorry I haven't been on here in a while, quick update in my husband. He had a lung nodule show up on his February 2017 Lung CT, watched it for 6 weeks, it doubled in size, removed by VATS in may 2017, two lung CT's in august and December have been clear. He also continues to have MRI of right leg which have so far been clear, hope you are doing good.

Buddyjkl.

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