24yr old mom with tumor in spinal cord

mamaof3boys Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
So im 24years old, i have 3 beautiful young little boys and finally got news as to why ive had the worst pain ever for the last 2 years being pregnant. I have cancer. My last pregnancy was really very very painful. The whole pregnancy i thought i had Sciatica so i ignored it and just proceeded to take darvacet as my Ob/gyn prescribed me throughout entire pregnancy. The pain i had was killer, I pretty much lived in our hottub as hot water gave some relief from pain. After i gave birth to our son on Nov. 11th 2009 i noticed that my pain still didnt ease up, as a matter of fact it worsened and i lost all feeling in saddle area, movement in legs, and couldnt walk at all and would fall at times when i tried to get up. My husband rushed me to the local ER and they ended up running an MRI on me that night and found i had a LARGE tumor inside spinal cord that is pressing against all nerves and causing loss in many things as its tangled up in there. I was always hurting in tailbone, and that explained why it hurt so bad. The tumor had been slow growing and decided to grow fast when i was pregnant for 2 years back to back. It is located from the L4 to S1 i believe dr said, so quite large. The ER dr's sent me that night to Standford University and they preformed surgery the next morning. Dr was able to remove 90% of tumor but as for that 10% he wasnt able to even touch it without causing me to be permanantly paralyzed. So yesterday we had radiation consultation and Dr discussed what needs to be done now. He said that i need radiation treatments for 6wks, 5 days a week and started telling me that in anywhere from 5-30years i will more than likley get some other kinda cancer from all the radiation. Now, when im being told this, you can only imagine what im thinking, GREAT im gonna go through this now, and again later??????? whats the point. So then my mom was reading in their little handout booklet of the other kinda of radiation available for me. Its called Protons radiation???? Has anyone received this kinda treatment?? the dr. said that its a better radiation for me, and wont cause the long term affect like the other kind. I know my post is long, im sorry for this, this information is really scary for me and honestly i don't know what to do but i thought i would open up here and see what kinda of information i might get from people. Thought it would be a good place to open up. I guess there is only 4 places in the US that preforms this kind of radiation, and Riverside, ca which is 6 hrs from me would be where we would go if they ok the treatment.

Stephanie T


  • mrshisname
    mrshisname Member Posts: 186
    proton therapy
    is the website for Loma Linda Hospital where they do this therapy.
    I had a friend a few years back with spinal canal tumor and she went to Boston for treatment. Sorry I can't be of any further help, your thread just caught my eye, I don't know if it was for a reason but I just happened on it, after looking at the Loma Linda site for my husband's prostate cancer.
    I will pray for you.