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19 yr survivor and NEED ADVICE! please

cweber52
Posts: 4
Joined: May 2012

I was diagnosed with rhabdomyosarcoma before my 3rd birthday and spent about 2 years in the hospital undergoing chemo and radiation to my head and neck area. The tumor was inside my nasal cavity bulging the soft pallet of my mouth and was centimeters away from my brain. Due to wear the tumor was located they blasted my jaw to my eye sockets with radiation causing me to have some long term side effects.I am now 23 and my lower jaw is underdeveloped causing my face to look more narrow than an average girl of my age. I have already had cheek bone implants and my next surgery is to have lower jaw bone implants put in, but the doctor who is to perform this surgery is telling me that the risks of getting an infection in my bone is much greater than getting cheek implants, especially with a person who has been radiated in that area, and he is scaring me because he is saying I could end up losing my whole lower jaw. He said the chances are 50/50 because he will be striping the blood supply on the outside of the bone and is relying on the blood flow inside my bone to hold up in the healing process, which is making me second guess my decision. I have been waiting for this surgery for years and you can only imagine how devastating it is to be told you could end up looking worse than you already do, I understand there is always risk in surgery. I had a somewhat minimal amount of radiation, 5080 CGY's to be exact and on Monday I will be having a CT of my skull so I have to take in consideration the amount I will be exposed to then as well. Can someone please give me information on this and/or successful recovery stats?

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi cweber,

Wow what a story you have lived! Congratulations on 19 years of being a survivor! I'm sorry I don't have ANY experience with the surgery you are inquiring about, but I am an advocate for second opinions no matter what type of surgery or treatment. Is there a major hospital or university hospital near you? You can start there or get a referral from your primary care physician. You may also want to check out the head & neck board, it seems to be a common procedure and there are many who have had it done.

Best Wishes!
Cat

bluerose's picture
bluerose
Posts: 1090
Joined: Jul 2009

I am so sorry that you have been and are continuing to go through so much stress and worry with your surgeries and possible reprocussions of the next one. I totally agree that for this kind of situation a 2nd opinion is necessary and would suggest you think seriously about having another specialist/surgeon have a look see.

All the best with whatever you decide to do and do keep us posted.

Blessings,
Bluerose

MT_Wallet
Posts: 1
Joined: May 2012

I will only add to the above excellent comments by saying that you could get even more advice from your university medical center or a hospital such as Mayo Clinic or Cleveland Clinic. I don't believe your current doctor is "scarey", but he may be painting the risks too heavily and not giving enough attention to the benefits. Many doctors will do this. It may be the doctors method of making you weigh your options and determine what is best for yourself, after all, it's your life that depends on his skill.

As a side note, when I had my surgery I was given a 60% chance of not living through it. I figured a 40% chance of living well was worth more than a 100% chance of living longer but dieing miserably. (For what it's worth.)

angela.barnes38
Posts: 15
Joined: Jan 2012

I agree with cat, you should consider having the second opinion from the nearest university hospital, before you decide anything.

annsher88's picture
annsher88
Posts: 5
Joined: Apr 2012

What a story you have! I don't have experience with rhabdomysarcoma but I do think, like some of the other posters here, that you should get a second opinion from another doctor about the risks and benefits of the surgery. In my experience it always helps to get more than one perspective before you do anything--especially anything surgery related. Keep us posted on everything! I hope you get better.

annsher88's picture
annsher88
Posts: 5
Joined: Apr 2012

What a story you have! I don't have experience with rhabdomysarcoma but I do think, like some of the other posters here, that you should get a second opinion from another doctor about the risks and benefits of the surgery. In my experience it always helps to get more than one perspective before you do anything--especially anything surgery related. Keep us posted on everything! I hope you get better.

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