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Two Desmoid Tumors And Counting.......

I was 25 when I had my first Desmoid Tumor removed. It was in my upper right thigh. The dr told me about an 1" scar, I woke up with a 14" scar. He told me I would be fine after I healed. I have had nothing but pain since. I told him before the first surgery my hip hurt all the time, he said it was unrelated. I am now 27 and the tumor is back and right on top of my hip. The large lump, that is the tumor, has been there since shortly after the first surgery--they said it was scar tissue. I am more than mad at this point. I do not want to do this again. I am nervous about what this means for my mobility. I already have a hard time sitting or standing for too long, walking far and so on. What will I be left with after this second surgery?

He told me I shouldn't have any children because they think maybe the increase in hormons can increase the risk of these tumors coming back. So, my choices are have children and maybe have tumors or have no children and maybe have tumors. I will not let these tumors decide if I have kids or not. I will have kids. Screw these tumors.

I am pissed. I do not know why my body is forming these. I do not know what to do to stop these and it is heartbreaking that the dr's do not know either.

My 2nd surgery is Monday, September 27th.

Talisa

UPDATE--

Sorry this has taken so long. Thank you so much for all the kind words!

Yes, my second surgery went ok as did my third. I am now on my second year since my 3rd surgery, all my tumors have reoccurred at year 2. I have had the first MRI this year and all is clean and clear! Hopeful my last scan of the year will show the same unchanged results! Please feel free to catch up with my story at my blog:
http://peacefulwillowfarm.blogspot.com
talisaburnett talisaburnett 26-30, F 8 Responses Sep 17, 2010

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Just diagnosed two days ago. Very confused. Nobody has real answers either.

You are correct, there isn't answers. But there is hope, there is a life beyond these tumors! Fight!

you can read about my story at:
http://peacefulwillowfarm.blogspot.com

I you would like someone to talk to, I was just diagnosed today with a desmoid in my pelvis. I am scared and confused. Haven't even talked to an oncologist yet - just a message from my Orthopedist's PA. I thought I was relaying good news to family that my tumor was not malignant, just a desmoid. Looked them up on the net tonight and now and completely freaked out.

Hi I'm meghan I'm 27 I was diagnosed with desmoid tumors in my lower left calf when I was 25. I've done so much research and I've tried 3 different drugs. I started with surgery and dr. Removed to tumor wrong. It spread through calf and caused 4 tumors to grow back in the matter of 2 months. 15cm being the largest. I then had 3 more surgeries and 8 tumors removed. I had surgery every three months. In the mean time I tried Gleevec for 6 months and that didnt work then I tried hydroxyurea for 2 month that was pointless. I then tried nexavar it has kept my tumors stable I have 7 right now. I've been on been on nexavar for a year and a half . 6 months on two pills and a year on one pill. I have very little side effects. Just a pink face but makeup helps. I also dropped 15lbs and I'm tiny to begin with. I also decided to not do radiation. I started seeing a natural path and changed my diet and take lots of supplements that help keep tumors at bay. I cut out red meat, sugar, soy, all dairy, and try to eat very clean. Dr. At md Anderson don't want me to have children but I just got married in August and we want children badly! I'm determined to get rid of these! Hope to hear more about your progress!

Yes, I agree! Health and life style changes are required when you have these tumors! I too have started eating healthier and cleaner, started taking my health more serious and staying active is key! I have never felt any better! Hope you can keep the monster at bay and having a family in the future!

I agree don't let this awful disease dictate your life and happiness! My desmoid is in my right glute. Had surgery, radiation. Then re-occurrence. I started Chemo lost my hair for my wedding and the tumor grew, and show up behind my knee. I got supper healthy, and then pregnant. Blessed with a little healthy boy I will NEVER regret the decision to get pregnant even though it cost me my mobility. This disease will grow alot pregnant and you can't take much because of the baby. Doctors everywhere have not been able to 'cure' or stablize my case so live life. Do as much as you can for as long as you can.<br />
They are doing alot of research out there. Hopefully soon we can be tumor free. Good luck on your journey.

Thank you so much for your kind words! I agree, we can not let these darn tumors stop us from living life!

Talisa, I finally took the time to research and found this site. First I would like to know how your second surgery went please? Please God it went well with no more recurrences.<br />
I was diagnosed with a desmoid tumor of the pubis when I was 28 yrs. old and 8 months pregnant. Many surgeries followed, each time the doctors felt they got it all. Finally teh last operation to remove it was followed by 25 rediation treatments. I truly believe that is what finally stopped the recurrences. Lots of damage was caused by the tumors and surgeries. I am now 63 yrs. old and live a reasonable life and so can you. I have never known, or heard of, anyone else with a desmoid tumor, so while this is sad, it is also enlightening.<br />
Marilyn

So glad to hear you are doing well and living tumor free! I will update my post!

From all the research that I have done in my own spare time, the desmoid tumor is highly related to a condition called Gardner's syndrome (a form of FAP). Maybe your family and children ought to be screened for FAP in order NOT to have colon cancer in the future.<br />
<br />
My boyfriend has FAP and after surgery to remove his colon, he is now developing one desmoid tumor around 11cm big in his abdomen area. I am so frustrated but the good news is that this type of tumor can be shrunk by high dose chemotherapy. We will see what happens.<br />
<br />
Hang in there and have faith.

I hope everything turns out well for your bf--I do not have FAP and no one in my family has a history of it either. I will update my post soon!

Our 12yr old daughter had a tumor on her left calf, when removed it measured 8.5cm and was thought to be cancer but pathologist at Harvard says its a Desmoid tumor. PET scan shows 2 more tumors in left thigh and one in lymphnode of left groin..all about 2" diameter! St Jude's has team discussing options but we are so frustrated. How can they be spreading if they are unable to matastasize?? What if they are ALL Desmoids? What does this do to her mobility? The ones in thigh are inbedded into the muscles!! Her first surg to remove the one in the calf was successful but they were unable to get any margin.<br />
I am so sorry to hear your story, but I am frantically researching everything I can. Do you know of anyone who has multiple desmoids, esp in the lymphnodes? Are our other 4 children at risk? We are so scared! We thought cancer was the worst diagnosis but this seems to be even harder so handle. What is the long term prognosis? Our baby girl will always have these? Can they pop up anywhere, anytime? <br />
Praying for only the best for you and hoping you can help us understand this sickness more. God Bless!

I am so sorry this has started in your 12 yr old daughter. My 2nd was in deep in the muscle as well. Unfortunately, these could and could not show up in your other children. No one really knows why they appear in the people they do. I am the only one in my family history that has had these tumors. The key is staying active--personal training has helped me more than anything. I have stuck with it for 2yrs now and it helps build up the muscles that were damaged because of surgery and helps strengthen the ones that are left doing double duty!

I know you posted this several years ago but I would love to know how your daughter is doing. I am newly diagnosed with a desmoid in my pelvis.

I was diagnosed with Desmoid tumors at age 9. My surgeon suggested a biopsy, and then after they found out it was a tumor, they thought it would be best if i had surgery to remove both of them, one on the back of my thigh in towards the muscle the other right behind my knee.. My surgery wasn't bad, and i am sorry to hear that. However, I also had more tumors appear. I now have 7 tumors, which over the last 3 years have been stable. But, i went through a course of Gleevec, a chemo and i honestly didn't even take it when i was supposed to (terrible i know) But they stopped growing! I'm terribly sorry to hear this. I am now 15, and stable. Good luck.

That is amazing to hear and I hope you are still doing well! I am so sorry you were and are so young and going through this. Keep your head up!

I'm so sorry to hear about all that you're going through. I hope your second surgery went well. I don't know much about what you're going through but if you need someone to talk to please feel free to message me anytime.<br />
Take Care

Thank you for your kind words!