Need advise please

Ellie79
Ellie79 Member Posts: 1
in Sarcoma #1

Hello,

I had an ultrasound and a ct scan two weeks ago and doctors think I have a fairly large

large retroperitoneal liposarcoma and are suggesting a pt scan and biobsy as next steps

steps. I then did some reading about this cancer and have some thoughts. If you 

are familiar with this subject may I have your feedback please.

My thoughts right now:

1. I have read that a biobsy may not be a good idea because it will "seed" more

cancer cells.

2. Will a pt scan not add more (bad) radiation?

3. I worked in the semiconductor industry fir 28 years and specifically very close

to ion-implanters and with spin on arsenic in the early 80's. I read that radiation and ch

and chemical exposure could be causes. Is there anyone else out there who worked

in this industry and developed this kind of cancer? Is there a pattern? Very concerned

because I still have family working there.

Thank You.

Comments

  • kazzie
    kazzie Member Posts: 2
    #2

    I too have found out i have  a2kg 25cm mass retroperitoneal liposarcoma in my abdominal cavity - I have now had so many tests. I cant comment on the amount of radiation but I am at the stage I just want it out. I am in my 3rd of 25 radiation treatments which will be followed up with majour surgery removing my kidney and some bowel also as it wqrapped around these areas and also whree the radiation is hittng. Becasue its so rare I have given over control to the specialists as I dont see many alternatives really. It doesnt appear that anyone seems to know what caused it.

  • Deedee17
    Deedee17 Member Posts: 2
    #3
    Husband with retroperitoneal liposarcoma

    Hi Ellie,

    First of all I am sorry to hear about your health challenge. I am the spouse of a liposarcoma fighter my wonderful and very dear husband.

    My husband was first diagnosed with liposarcoma August of 2016. He had all of the associated fevers and night sweats. Of course because this is such a rare cancer it took some time to get it properly diagnosed so I understand the frustration of getting test after test. He had his first surgery September of 2016. Unfortunately the darn tumor came back in June of this year. The night fevers and sweats tipped me off. They removed the tumor in late June and decided to start him on radiation (last Monday) and Ibrance (today). His first post surgery MRI is showing an abnormal growth about 1in diameter near the original spot of the tumor. We don't know what it is yet. Oncologist and surgeon are currently looking into it.

    1) My husband had to go through a biopsy the first time because the doctors wanted to confirm it was malignant. Once it was confirmed surgery was scheduled and they removed the tumor.

    2) Due to the recurrence my husband has to get an MRI every 4 weeks now. During his first recurrence the tumor grew 5 inches in less than 2 months!

    3) Nobody knows what causes this type of cancer. In my husband's case I believe stress to be a contributing factor.

    My thoughts and prayers are with you and your doctors. I take my life now one day at a time. I enjoy the hours with my husband when he is free of nausea and try to get through the other hours as quickly as I can.

     

     

     

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