TubThumping's Journey with Sarcoma - Adult Soft Tissue Cancer

Patient: Sarcoma - Adult Soft Tissue Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Female, Age: 54, Stage III

  1. 1
    over 5 years ago
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    Diagnosed

    Oh No

    I had a swelling on my right shoulder area, around the shoulder blade. I had gone to the doctor for my regular check-up in June and asked the nurse practitioner to look at it. She gave a cursory glance and told me to use ice and heat. By August my arm would ache by the end of the day, I couldn't sleep on my right side or back and I was taking 6 to 8 ibuprofen a day. It was rare for me to take anything. I decided to make another appointment as soon as my daughter went back to school. on September 7 I saw a different doctor who poked and prodded, seemed puzzled and sent me for an MRI. I had the MRI on September 9 and left with the idea I would have results in about two weeks. THAT NIGHT, the doctor personally called me and told me it was a liposarcoma and gave me the name of a doctor to call. I made a mistake and looked up liposarcoma on the internet - DON'T DO THAT - IT CAN BE SCARY! I saw an orthopoedic oncologist surgeon on September 15. He was pretty confident I had a liposarcoma, but scheduled me for a biopsy the next day, September 16. All this while I was trying to work and pretend that nothing was wrong. I wanted the whole picture first, before I said anything to co-workers.

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  2. 2
    over 5 years ago
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    Needle Biopsy

    Procedure or Surgery

    September 16, 2010 - Needle Biopsy - Everything went as expected except the part where we waited for hours. The doctor was in surgery and the had to fit me in. I got there at 1:00 and the biopsy didn't happen until about 6:00. Thankfully we had friends that got our daughter to her after school activities and had dinner ordered for us when we got to their house.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    over 5 years ago
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    Diagnosed

    Oh No

    Continuation of diagnosis Wednesday, September 22 - Apt with surgeon. He confirmed the biopsy showed Stage 3 tumor. The sheer size of the tumor, 12 cm, gave it a scary category. CT Scan shows small suspect artifacts. Set me up to see radiation therapist on September 23

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  4. 4
    over 5 years ago
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    External radiation

    Radiation

    October 4 - November 8 2010-The worst part of the radiation was having to leave work and drive 40 minutes to the hospital. Treatment was less than 30 minutes from check-in to leaving. Then 40 minutes back to work. As time wore on I didn't return to work, I just went home. I was exhausted! The worst side effect I had was that I lost all the skin under my armpit. It was nasty, oozy and raw. I couldn't wear a bra so I wore men's t-shirts. I cut smaller T-Shirts so I could slide the sleeve inside out over my arm to protect the underarm. Then I'd wear another shirt to keep it all in place. On the bright side, the radiation oncologist gave me hope regarding the CT scan. He said the artifacts in my lungs are so small they can't even biopsy them and everyone has some artifact in their lungs. These are probably nothing, but they'll keep an eye on them.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    over 5 years ago
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    Low Iron Levels

    Oh No

    November 17 - Bloodwork done for surgery. Iron levels are dangerously low, have to see my primary care. Scheduled for a visit to a doctor I had never seen before. He is alarmed and told me not to go on vacation. Ha-That is not going to happen.

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  6. 6
    over 5 years ago
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    Bone Biopsy

    Procedure or Surgery

    Dr seems to think the tumor has infiltrated the bone because it is touching the bone He wants a bone biopsy done of my humerous.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  7. 7
    over 5 years ago
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    Cruise Vacation

    Celebration

    November 21 - November 28 2010 Radiation is finished and surgery is coming. We all need a break and this worked perfectly into the schedule; 8 days/7 nights on a ship to the Port Canaveral, Nassau and Freeport. I wish we had done cruises years ago. Irt was awesome. I was so tired every night though.

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  8. 8
    over 5 years ago
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    Blood Transfusion

    Procedure or Surgery

    November 30 2010 - Blood work still shows low iron. Have to go for a transfusion at Loudoun Hospital. They have W-Fi and will feed me lunch. I am just tired and sleep. After the transfusion I feel surprisingly lively.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  9. 9
    over 5 years ago
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    Decision Point

    So the bone biopsy is really inconclusive. It could go either way. My options are to have the tumor removed and scrape at the bone or remove the portion of the humerous that could be affected. If I choose just to have the bone scraped and there is infiltration, even minor, I could have a bigger issue later. If I choose partial shoulder replacement I lose my rotator cuff. I won't be able to lift my arm above shoulder height. It will make doing my hair difficult. I won't be able to swim effectively and I'm sure there are a number of other things. I err on the side of caution. We will do the partial shoulder replacement.

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  10. 10
    over 5 years ago
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    Surgery

    Procedure or Surgery

    12/7/2010 Surgery - A day that will live in infamy. Obviously I don't remember much about this day. I arrived at the hospital with my husband and my 22 year old son joined us to stay with his dad. They took me back to prep. I know I was anxious and just wanted to get everything over. Before this day I had never had anesthesia, so one of my biggest fears was not waking up. I got into the operating room, switched to the operating table and don't remember anything else until I woke up in the recovery. I was uncomfortable but not in pain. The surgery took about 5 hours total. Part of the time was spent on the removal of the tumor and the other part was spent on doing the shoulder replacement. I honestly don't remember what time it was. They moved me to a room. I remember only waking up long enough to push the pain killer button. The next day the surgeon came in to say the surgery went well, but he had to remove more muscles than expected. He wanted to bring in a plastic surgeon to perform muscle flap surgery. Without the additional surgery it would leave my scapula unprotected.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  11. 11
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    12/10/2010-Second surgery to do the muscle flap reconstruction. A plastic surgeoun performed the operation. I asked if he would pull the girls back up where they belong while he was in there. He was NOT amused, silly doctors, they need a sense of humor. That surgery too a few hours and I know I woke up in recovery crying. I'm sure they put me back out and the next thing I knew my family was there. They got me to my room and I stayed until Monday. All in all I had no complications. I was confused, they had me on the oncology ward and then this woman from Life With Cancer came to visit. I found out I had cancer! No one told me I had cancer. I had a tumor, a sarcoma, it was malignant, it was Stage III, they did radiation, but no one told me it was CANCER! I think that worked for me, a little denial meant I could deal with this tumor, work and family. All together I had seven days in the hospital. The ride home was bumpy but Tim kept the ride as smooth as possible. He drove more carefully than when we brought our kids home from the hospital.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  12. 12
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    January 2011 - March 2011 Chemotherapy - After I felt nicely recovered from surgery and was moving along on physical therapy train muscles to take over from the missing muscles I was told I needed chemotherapy. I guess it shouldn't have come as a surprise, the surgeon said he was going to send me to an oncologist who specialized in sarcomas. Chemotherapy isn't realy proven to be beneficial in the treatment of sarcomas but the oncologist said the like to use it in case there was residual cells floating around. Again, a better safe than sorry treatment. So off to start rounds of MAID chemo, but before that could begin I needed a port installed and a MUGA scan. Great drugs - one can cause heart damage and the other bladder damage. Chemo was 4 days on three weeks off, began at 8:00 each morning and I left about 5:00 each evening on an overnight pump. Looking back I find it amusing that not only did they pump my full of a drug that nurses handled with two sets of gloves because it causes skin damage they sent me home with it! Long story short, my blood counts tanked over and over again. I had 6 blood transfusions and two platlet transfusions. I kept telling them to give me the blood of a 19 year old soccer player! The plan was four rounds of chemo but I only made it to three. I felt like cr** but only got sick 3 or 4 times. I finally figured out it happened when I ate anything with a high sodium count - boullion or Cup of Noodles. Once I stopped eating anything with high sodium content it didn't happen again. I lost a little weight but not enough and it didn't take long to put it back on. Sad face.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  13. 13
    over 5 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    August 2011 This is more than peripherial neuropathy. It's being called radiation induced brachial plexopathy. I do have some neuropathy in my left fingers, right at the tips, but my right hand lost fine motor function from late June - early August when I had to switch to being left handed and typing with one hand. For the most part I just deal with it because it doesn't do any good to feel sorry for myself and question why this happened to me - why any of it happened to me. Some days I do allow myself a little pity, this setback has robbed me of a lot. I used to knit, crochet, sew and scrapbook. Now everything, even things I don't like to do, like fold laundry and do dishes are more than difficult, but life happens and I move on.

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  14. 14
    over 5 years ago
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    MRI

    Procedure or Surgery

    10/19/2011 - Today I am having an MRI of my right brachial plexus. The motor skills of my right hand have deteriorated to almost nothing. I cannot write, type, grip, hold or pick up things with my fingers. When I do hold something using the right hand it is very clumsy looking and whatever it is must be supported or Ii'll drop it. I have no real feeling in my fingers, they feel lik someone has pumped them full of fluid. Strangely though, if I hit my work badge on them or any thing else that is rigid it feels like they are slicing in half. Weird. This has been the most run around I have received. In August the oncologist sent me to the surgeon. I already had an appointment but when I saw him he sent me to a neurologist. Neuro guy is nice enough, but a little clueless with a brachial injury. He had me do an EMG which showed involvement to the median and radial nerves. He told me to Google Brachial Necrosis and said to try to see the radiation oncologist. I saw him last Friday and he is convinced that this isn't radiation induced. He wants another MRI to rule out a tumor on the nerve! Why do they always go for the worst! The surgeon doesn't believe it is a tumor. I guess I'll find out Friday or Monday and as I keep saying. It is what it is, we fix it and move on.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  15. 15
    over 5 years ago
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    Health insurance issue

    Oh No

    My radiation oncologist sent me to a hyperbaric oxygen treatment doctor. I had a consult that lasted a few hours between speaking to nurses and the doctor. It's unknown if this will help the nerve damage I am experiencing, however this is an approved treatment. It's even a Medicare approved treatment. My insurance company came back today and denied treatment. I have to wait for the letter to come in the mail and then start annoying them. Sad.

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  16. 16
    over 4 years ago
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    Hyperbaric Oxygen Treatment

    Other Care

    02/13/2012 - After waiting and waiting the insurance company finally approved the hyperbaric treatment. I have 30 sessions over the next month. From beginning to end each session lasts about 4 hours. The drive is horrendous-ok not horrendous-but it's far and in traffic and construction. I also have to leave work or go in late everyday. They say f the treatment is effective I won't see results until after it is over. Cross your fingers.

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  17. 17
    almost 5 years ago
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    CT Scan Results

    Procedure or Surgery

    4/24/2012 - Had my CT Scan on 4/18 and got the results today. I have mixed feelings about what I was told. I have these three nodules that they have been watching since the beginning. They are small; 4mm, 3mm and 4mm. Another small nodule was seen in my December scan. The two 4mm nodules have increased in size to 6mm and the 3mm nodule is stable. The other one isn't even given a measurement, so it must be very small. No new lung nodules have developed. Not awful news but not comforting either. My next scan is July. I was hoping my scans would get farther apart, but I guess not yet.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  18. 18
    almost 5 years ago
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    MRI

    Procedure or Surgery

    5/7/2012 - Had an MRNeurography at John's Hopkins today. They are specifically looking to see if they can see scar tissue or anything repairable with the brachial plexus nerve. It's basically a high powered MRI. They also looked at the surgical bed and surrounding areas to check for recurrence. I don't get results until next week, so now it's the "'scanxiety" waiting game.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  19. 19
    over 4 years ago
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    CT scan

    Procedure or Surgery

    08/02/2012-Results of the CT scan done on 07/24/2012 were good. One 6mm nodule increased in size to 7mm over the course of 3 months. This apparently does not concern Dr S so it is not going to concern me either. The other nodules are unchanged. Even better, I don't have to have another CT for 6 months! So, not until January! I'm hanging with NED through the holidays.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  20. 20
    about 4 years ago
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    Birthday

    Celebration

    12/7/2012 - OK, not my 'real' birthday, but we all get two of them now don't we? It's been two years since I had surgery to remove the tumor from my shoulder. So far so good. I don't have new scans until February. They are still watching some small lung nodules, but I am not going to be worried unless the doctor says to worry. So, for now I'm cancer free and hoping NED sticks around.

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  21. 21
    over 3 years ago
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    Cancer has spread/Metastasized

    Oh No

    OK, so I don't know that I would call this spread or that it metastasized. I have a few lung nodules that have been around since my first CT scan. They are very small and have changed at a very slow rate over the course of 2.5 years. One reached 13mm so we did a lung (needle) biopsy. It came back consistent with sarcoma but a less aggressive type than my original tumor. So now I am part of the Votrient team.

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  22. 22
    over 3 years ago
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    Fatigue (tiredness)

    Side Effects

    Ok, so side effects from the Votrient. I picked one, but there are many. I don't want to complain because comared to AIM this is a piece of cake. I am tired, but not overly tired unless I exert myself too much. Then I am exhausted. I have mouth sores, tongue sores and my throat is raw. Those things are all connected. I also have hand/foot condition. My hands and feet are red and the skin is peeling off. They are a bit tender. Like I said though, this is a piece of cake compared to AIM and I get to keep my hair.

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