• HygienistMom's Avatar

    HygienistMom wrote on Sddinkins's wall

    I have a question for you or anyone else with a synovial sarcoma. Now that I am done with my initial surgery to remove a 3.4 cm mass on right ankle and have completed 33 radiation treatments, what other scans in addition to chest CTs have you had and what is the frequency. I have just met with my orthopedic oncologist and am in the waiting room for my Chest CT. He wants me to return in 3 months for a chest X-ray if today's scan comes back clean and wants an MRI of my right leg at my 1 year anniversary. I am just questioning whether I should be having or should have a scan to check my liver, etc.... ?? He is experienced with sarcomas and considers mine to have a low risk of recurring due to size and the fact that I have had it for 30 years and it is considered to be very slow growing. I'm just feeling a little anxiety now that I am finished with active treatment and I don't want to think every little pain is something bad!!!!! Julie

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    • Sddinkins' Avatar
      Sddinkins

      My oncologist said the lungs are are the most common site for Mets with synovial sarcoma. Also recurrence at the same site is higher risk in the 1st 5 years. I don't think you said whether your surgeon got clear margins or not, they were not able to get clear margins at the base of my tumor. That may influence your particular follow up. I had a chest CT and an MRI of my tumor site every 3 months for the 1st 2 years, then every 6 months for the 3rd year then just a chest xray and site MRI every year. This summer will be my 5 year checkup with a chest CT and Site MRI. I don't know the plan after that. You are never wrong to question your plan of care or to get a second opinion. Unfortunately this experience leaves you a little shell shocked and worried about any cough, pain, lump, etc. It does get easier but I can tell every time I have to get my checkup I get a little crazy. Oh well my family may say very crazy but they support me just the same.
      So glad to hear you are done with your radiation and can get on with your life. Hope this info helps ☺
      Sncerely,
      Diane

      over 3 years ago
    • HygienistMom's Avatar
      HygienistMom

      No clear margins were established as I had a " tail" that wrapped around my tibia. My radiation oncologist was VERY particular about addressing this area. Often times I would be repositioned....many times 3 or 4 times to get that spot exactly where he wanted it. I had a X-ray of my ankle every set up for positioning and a CT ( anatomical not diagnostic) the first several treatments and then at least once per week thoughout my radiation treatments. I felt he was very detailed and this facility used the newest most modern equipment that is available . So that part of my treatment I have total confidence in that it was handled with the best there is available with today's technology.
      I was just anxious about my orthopedic oncologists decision to wait until my 1 year for a new MRI of my leg. His reasoning to me is that due to the size ( less than 5 cm) and the fact that I had it for 30 years ( it is obviously a very slow grower) puts me at low risk for recurrence. My chest Ct came back NED so happy news. He wants just chest X-rays now at 3 month intervals and than a chest CT AND right leg MRI at my one year. Not sure what the plan is after that. I was just checking as I don't want to " fall thru the cracks". I of course think they need to scan me from the tips of my toes to the top of my head daily to reassure me I'm NED!!!! Back to that being crazy part!!!! Thanks for your help....it is nice to have found someone with a similar situation to help me relax a little. I'm so happy you are going on 5 years with no sign of recurrence. You give me hope!!!!!! Julie

      over 3 years ago
  • HygienistMom's Avatar

    HygienistMom shared an experience

    Radiation (External radiation ): Just completed 33 radiation treatments following removal of a 3.4 cm synovial sarcoma on my right ankle. Tolerated the procedure well. Minimal skin irritation even with them using a bolus. Side effects so far include swelling in the ankle and stiffness if I am on my feet for any extended time. My radiation oncologist is expecting this to improve with time and thinks it may be also be lingering side effects from the surgery to excise the mass.

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    • cone's Avatar
      cone

      I'm glad you're finished with the radiation treatment and that there was little effects. How are you doing now? As my Aunt Agatha would always say...."it could always be worst!"

      almost 3 years ago
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    HygienistMom wrote on Sddinkins's wall

    Diane, How far into your radiation treatment did you start seeing a therapist? Most days I think I am okay and then I will have a really down day. They have a cancer support therapist at the treatment center I go to but I have only spoke with her briefly on the phone. Also, I am seeing the true colors of family and friends!!! I am overwhelmed by the generosity of some and shocked at the insensitivity of some immediate family members. How did or do you handle these toxic people?! Julie

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    • Sddinkins' Avatar
      Sddinkins

      I didn't start seeing a therapist until around the 3rd week of my radiation. At that point I just became unable to hold everything together on my own. I was just so exhausted and as a nurse, tired of taking care of ungrateful people who were much healthier than me. I sometimes just wanted to grab them and scream at them (which of course I didn't do, since I was supposed to be the professional.
      As far as the unsupportive people, I think you just have to decide you don't need them and build a new (cancer) support team. This may be a totally different group of people however the word cancer seems to bring out the best or the worst in people. Once during my treatment I went to visit my family and one of my close family members never asked how I was doing but did hit me up for gas money. Supposedly she had used all her gas to come to my mom's house and see me.....In my head I said just don't bother.....and then I tried to let it go....sometimes easier said than done. The therapist really helped me talk out those kind of problems.

      Don't hesitate to write back when you feel like you need someone to understand. If I am working it may take me a couple of days to answer but i will answer.

      DIane

      over 3 years ago
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    HygienistMom shared an experience

    Radiation: Began my first of 33 radiation treatments last night. Had a very long sim appointment last night with an early morning return treatment today. Am having to completely disrupt my work schedule to accommodate treatments but that is my only options as my orthopedic oncologist at the University of Chicago was very specific about " where" I could have my treatment. It is 56 miles each way to my treatment facility at University of Chicago Comprehensive Cancer Center Silver Cross. My only other option was driving into the city to the University Medical facility daily.

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