Monday, September 20, 2010

Two Desmoid Tumors and Counting…….

According to the Desmoid Tumor Research Foundation, Desmoid tumors arise from connective tissue - the cells involved with the formation of muscle, fibrous and nerve tissue. Desmoid tumors, also called aggressive fibromatoses , are locally aggressive. This means that they can grow into and even destroy adjacent normal tissues, even bones. They do not, however, have the capacity to spread distantly (metastasize) throughout the body. Hence, most doctors consider desmoid tumors to be benign and not malignant. But regardless of the name, tumor-related destruction of vital structures and/or organs can be fatal. (

To me they are a life changing tumor that will take away your mobility and strength you once had.
 My Demoid Tumor Story begins back in 2007. That was the first time I noticed my upper right thigh giving me some trouble. It was winter and we were out Christmas shopping like we always do the week before Thanksgiving. This pain continued for weeks until I noticed a small knot. I watched the knot, treating it with a heating pad and believed it was a pulled muscle until the knot begins to grow. That is when I made my first doctor appointment. By this time it was early 2008 and one doctor lead to another, the knot all the while growing. April 2008 the doctor wanted to do a needle biopsy to find out what type of tumor this was. That was the worst pain I have ever been through. Weeks later it was confirmed, it was a Demoid Tumor. This doctor referred me to the only Indiana Desmoid Tumor doctor, Dr Wurtz. He is at IU Med Center. June 2008 was my first surgery.

Dr Wurtz told me he would only be making a 1" incision to get Desmond the Desmoid Tumor out and that I would be able to go home the same day. Turns out he was wrong. I woke up with a 12" incision but was still allowed to go home. Recovery was hard and painful. The muscle spasms I had after the Biopsy were back followed by lightning strikes—these were because he moved my main nerve and cut several smaller ones. It took me 4 days before I was able to take myself to the bathroom. But a month later I was back at work. I would say the first few months were great! I had no pain and felt like I did before the tumor came into my life. But that all changed when winter came. Late 2008 my pain was back and was worse than ever. I could not clean the house without being sore for days after. I called Dr Wurtz about getting a referral to Physical Therapy but he did not feel I needed one. So, I took some advice from my friend and co-worker Lee, decided to start going to get some massage therapy. No, not that relaxing feel good massage that you are thinking but the painful at the time feel better later type of massages. By 2010 I was feeling great and was even back to doing Yoga and bike riding. Life was good!
Then the phone rang, Wednesday, September 15th. Since being diagnosed with a Demoid Tumor I had to get yearly MRI's. I went in for my regular MRI September 1st and thought nothing more about it. Until the doctor called and said it showed my tumor had re-grown, this time higher around my hip area. My world was crushed! I was so glad Duste decided to come home early that day and she was there when I got the call. We cried the rest of the day. The next day I had an appointment with Dr Wurtz and another MRI. By this time I was done feeling sorry for myself and was now mad.
I am mad at my doctor because he said the hip pain I had complained about before my first surgery was unrelated. When the large lump showed up and my hip pain returned he said it was scar tissue. I believed him. He was wrong.
Now I have to have yet another surgery on Monday, September 27th on a spot where the roots/fingers of my last tumor left off. The same spot where the large lump appeared and all my pain all this time has come from. I do not want to do this again. I do not want to lay in bed for a month. I do not want to wake up after surgery to the pain. I do not want this!
I worry about my future. I worry about what this means for my mobility.
He did say one thing this time that he had never said before. Something I am trying not to think about, something I am trying to ignore. He said if it comes back again he would like to treat me with some pills, radiation and chemotherapy. The pill would put me into early menopause, which means no children for me. But he said he could not guarantee, after all this, that the tumor would never come back. He also said the hormone increase you have during pregnancy could cause the tumors to re-grow. I am not sure what to make of those statements he made but I am not going to let some tumor decide if I have children or not and that is for sure. I'm 27 years old, if I am going to have children I need to do it sooner than later and people love to remind me of this. I will not let a tumor that may or may not come back anyway determine my future of being a mother.
So that is where I am in my life right now. My life seems to be a raging river at times and my boat does not have seatbelts but Duste and I hold on tight for as long as we can. This reminds me of that saying "what to hear god laugh, tell him your plans!" This was not in my plans but we will work through this and carry on with our plans! Oh, and I am thinking about naming this one Dezy the Desmoid Tumor!


  1. Talisa,
    I found you blog address on the DTRF listserve. My daughter was diagnosed a year ago with a left thigh tumor. She has been receiving chemo for a year and has only 3 more treatments left. We decided to not use the pills you talked about due to her age - she needs to decide about pregnancy when the time is right and we did not want to take that option away from her. So far the treatment has worked: no growth and some shrinking. I know what we have been through the last year so I know it has been really tough for you. I pray that you are able to find healing and relief from pain no matter what you choose to do. I will be praying for you and following your progress.


  2. Thank you so much Michelle! I wish you and your daughter the best of luck, please keep me posted on her progress. I am very interested in what other treatment people have done since there isn't a set treatment plan for this. So far my recovery has been slow but I feel it was the best choice for me. I hope to never have to face this again but will be more educated if I do. Thanks again!

  3. My story begins with me going to the emergency room with sharp pains down my leg. They told me I had sciatica and sent me for physical therapy. This did nothing for me. I then went to an orthopedic doctor and was told it wasn't my back but my hip. He then sent me to a hip specialist who told me it wasn't my hip but sent me for an MRI anyway. When the MRI came back he told me I needed to go see a cancer specialist at Sloan because there was a tumor in my right upper thigh.

    I went to Sloan and was told they didn.t think it was cancer so come back in 6 months and we will look at it again. I then tried NYU with no results. Finally after about 15 months and a dozen doctors I went to the MAYO clinic and was diagnosed with a Desmoid tumor.

    I had a wonderful doctor who said that we needed to remove it surgically. So I had the surgery and they removed a tumor that was over 12 inches long and looked like a slab of beef. I also had it wrapped around my sciatic nerve and now have a numb foot, but the doctor told me I will get the feeling back. I now have a scar that runs from the top of my buttocks to the back of my knee.

    Unfortunatly my surgeon couldn.t get it all because there was some pieces that couldnt be surgically removed. I now have to go back in 2 weeks and meet with an onchologist and set up my chemo to hopefully kill the rest.

    I will come back here after my chemo and post an update.


  4. Jim~I can not believe how hard it was for you to be diagnosed. I had a diagnoses by my second Dr and was being treated by the third. I am so sorry it took so long and the tumor got so big. How was your recovery after the surgery? Did they have to take any muscle? I wish you luck with the chemo and please keep me posted on your recovery. Thank you so much for sharing your story!

  5. I'm so sorry you've had to go through this! I'm also 27 years old with a desmoid tumor. These things suck. I also have a blog about my journey with the tumor:

    The doctors have also talked about not being able to have children with me as I'm on chemo and then next thing on the list is anti-estrogen drugs. I wish you the best of luck! Hopefully this this the last you'll have to deal with the tumor.

  6. How wonderful it is to talk to someone my age with these tumors--please email me so I can get to know your story a little more. Thanks for contacting me!

  7. I am 36 years old and a female. I was first told that I had a desmoid tumor in 2001. In my mid twenties. For years I had this lump in the back of my right calf and the doctors always told me that it wasn't anything to worry about. In 2000, I went to to doctor because I could not walk, they did a MRI and just told me that it was fatty tissue but I needed to have it removed, so I did, guess what is was a Desmoid. I was told there was no cure and was set to a top surgeon how deal with Desmoids. I then had another surgery in 2001 in January, by April 2001, the tumor had came back and was bigger than before, the first surgery I was cut from the ankle to the just behind the knee. I then had another surgery in 2004, to remove the one from my calf again, but guess what when the surgery started removing it this time it was growing further up the leg, that never showed up on any MRI's, so when I woke up this time I was cut from my right ankle all the way up to the top of my tight thigh, I had of 200 staples. I then went through radiation and did the pills that put you in to early menupause. Well we then did not have any signs of the Desmoid in the leg, but guess what in 2005, I felt a lump in the top of my right foot, guess what a Desmoid, had surgery then radiation, then again in 2007 I once again had surgery on my foot to remove it again. My foot now is numb and tangles. But the bad thing is not from the radiation that I did but from the pills, and when they stopped all the pills I came out of menupause and then I had to have a full hysterectomy. Now it is 2012, there is still small pieces of the Desmoid in my leg but not big enough to remove. Can a Desmoid move yes, because mine bypass my ankle and went to the top of my foot. I now have a lump in my left top leg that has all the signs of a Desmoid. Desmoids per say will not kill you but all the medications and radiation and chemo will cause harm to other parts of the body. There are very terrible to have.

    1. I hope you are doing well. I am so sorry you are dealing with these.