SRS Rare 8 Inch Spine Tumor and Radiation

Discussion in 'On Topic' started by chainsawbarbie, Dec 4, 2006.

  1. chainsawbarbie

    chainsawbarbie New Member

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    For the long story: http://ritikamonster.blogspot.com/

    Cliffs: After 4 years of misdiagnosis for chronic back pain, doctors "discovered" an 8 inch tumor in my spine. I had surgery on November 13 (lumbar laminectomy, L1-L4). Surgery went well... tumor turned out to be a benign myxopapillary ependymoma (an ependymoma is any sort of brain or spine tumor and myxopapillary means that it's located in my lower back).

    These are extremely rare tumors. I've looked everywhere/online support groups etc., but I can't find a single person who has experienced what I have. Apparently, the most experienced neurosurgeon in the country only does two of these surgeries per year. I'm not sure what the hell this is. Apparently, there's no known environmental or genetic cause for this type of tumor... so it's sort of out of the blue.

    The doctor was unable to remove the ensire tumor. Microscopic residual parts remain and there's a high likelihood that this beast will grow back and perhaps travel to my brain. I am considering radiation therapy. Radiation has it's drawbacks-- including infertility, early menopause, spine problems, etc.

    What gets me most is the infertility. I'm 19 and a college student, and I'm not sure whether I want to have kids. I'm not mature enough to make the decision. I don't want to eliminate myself from the gene pool.

    I've considered going to a fertility clinic, but it's so difficult for women to preserve their eggs. I keep getting advice from guys to go to a sperm back. It's about 20x more expensive for oocyte preservation and success rates are low. It's hard to freeze eggs since they have so much water. When this water crystalizes, genetic material may be destroyed.

    I meet with my first radiologist tomorrow morning. The second is at Stanford University Medical center, and I'll probably go with them since they have top tier equipment.

    Anyway, has anyone gone through this? Does anyone know anyone who has gone through bits and pieces of this? I'm so confused, and I want to know what people have experienced.

    I'm not sure where to post this, so it's going in multiple forums.
     
  2. pixing

    pixing New Member

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    damn! that's incredibly scary. Do you have family to help you through this?

    Since the outcome of further tumor growth would be devastating, I would do whatever it took to try and prevent that from happening. Even if it meant that I could not have my own biological children.

    Losing fertility is sad. But you'd be alive and able to care for a child. Do you have a sister or female cousin that could donate eggs at a later date? I have a cousin who is infertile and a very good friend who has dealt with inability to maintain a pregnancy. The former is childless by choice and the latter has adopted two children and couldn't be happier.

    Good luck with your treatment.
     
  3. Darketernal

    Darketernal Watch: Aria The Origination =)

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    The long-term patient survival duration for MPE managed with surgery and adjuvant RT is favorable. To be honest, fertility is that last thing you should look at now, surviving the whole odeal and getting cured should be your at top most priority, think about it if you get a kid and it doesn't have a mother, that would NOT be a nice childhood to begin with, so who is most important thing at this moment is you yourself. You need to get THE BEST surgeon of the country, and very much discuss every possible option and latest available treatment that will work with the optimum amount of survivability and results.

    My advice is to definitly go for radiation theraphy. Whatever microscopic residu is still there needs to be destroyed immediatly!! And this is what you have to discuss with your radiologist and surgeon, as the elimination of this microscopic residu is of the outmost priority.

    For now forget about kids, instead do EVERYTHING possible imaginable that you still wanted to do in your life that is within your means. Whatever happens you have a valid reason to make the most out of your life in case of a nightmare scenario. Make every second of your life count!

    http://www.asco.org/portal/site/ASC...etail_view&confID=40&index=y&abstractID=32959
    http://www.asco.org/portal/site/ASC...gnVCM100000f2730ad1RCRD&index=n&pmid=16648988

    I did found a support group for people that have rare cancers http://survivor-support.rare-cancer.org/forum/ not sure what it can do for you tho with its rather low amount of members :hs:

    http://www.rare-cancer.org/

    It must be an experience beyond expressing in words *hugs* :hug:

    If you manage to get totally cured , you will most likely need to check up every 3-4 months or half year check up, depending on what your doctor will recommend. Because of it being rare, doesn't mean you are alone, we are here for you. :love:
     
  4. CharlesMNeo

    CharlesMNeo New Member

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    good luckk to youuu, whatever decision you make i'm sure you are gonna get through fine =)
     
  5. Sloi

    Sloi Back up in your ass with the resurrection

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    Fertility/Kids should be the last thing on your mind. Take the necessary measures to eliminate any leftover tumor. I hope things get better for you :hug:
     
  6. chainsawbarbie

    chainsawbarbie New Member

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    Update: Today, I had a two hour consultation with my radiologist...

    and goodness does my situation keep getting weirder and weirder.

    Apparently, my tumor is much rarer than what I suspected. The radiologist (rad.), a Yale grad with 10 years of experience, has never seen a case like mine. According to to the rad., there is no research on my type of tumor. There will most likely be no research. There have been 30 reported cases of people with my precise condition in the last 30 years (in the U.S.).

    It turns out that radiation will not affect my ovaries and uterus. My neurosurgeon thought it would, but it won't, so I've put those fears to rest.

    Radiation opens another can of worms, however. Radiation (considerably) increases chances of future cancer-- the rad. is especially concerned for my bladder and rectal area. If I do get cancer, I may not be able to have radiation in the future. The longer I live, the higher chances I have of getting cancer. I have 60 + years left to live, so who knows when I would die a cancerous death? Also, there's a chance that the ependymoma will grow back... even with radiation. If the ependy grows back, I will not be able to have radiation.

    So my other option is to wait it out. If I wait it out, I would need regular brain and spine MRIs... every 3 months or so for the rest of my life. It may grow back, it may grow back very slowly, or it may not grow back at all. If it grows back, I may need a second surgery... followed by radiation. We're not sure if my neurosurgen cut the blood supply to the tumor. I don't think he did, since the remaning tumor is entwined with my nerve roots.

    If the tumor grows back, it will be harder to remove with radiation since the radiologist must attack more cells. If I do radiation right now, there are fewer cells to kill, so it would be easier. It may be more practical to do radiation later. If the tumor grows back in 5 years, technology will be better, so I may have more options.

    If I choose to proceed with radiation, I will need to do it in southern California at Loma Linda. Apparently, I need a specific type of beam for the procedure (I need a proton beam as opposed to a photon beam due to particle dispersion properties). No Bay Area hospitals, not even Stanford or UCSF are equipped to do it. Radiation will take five or six weeks if I choose to proceed. I'm planning to meet with someone at Loma Linda within the next two weeks.


    The tumor probably won't kill me, but radiation may. I'm not sure if I feel comfortable going through with the radiation, but I'm going to wait until I meet with a couple more radiologists.

    So many things have begun to come together-- why I was misdiagnosed, why I had so much trouble in sports and tae kwon do, why I always dragged my feet while I walked. I probably had this tumor for my whole life. It's really a wonder that I can still walk and that I've regained so much strength.

    I'm so lucky.
     
  7. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Well, i did do some look up on it, and what suprises me in your case is why they didn't do a research on the tumor tissue that was removed, Especially if its such a rare tumor that might be linked to a genetical chain caused by some sort of DNA malformation.

    You definitly need to keep the checks every 3 months, even if that means for the rest of your life, and trust me id be the last that would wish such a thing happening in your life.

    Such a horrible thing can give you a devestating emotional blow, so you be sure to find support from your family and loved ones(on the condition that they are willing to understand your condition to a certain extend of course) and again get yourself the best of the best, you want to go severely thru all the possible options, and have long decisive talks with multiple professionals and let them correspond together on what they think is the best possible treatment for you. Because you are in more then just a difficult situation its from the outmost importance that you get the best of the best so that you did all you humanly possible effort into investing in your future.
     

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