So a lot lot lot lot lot lottt has been happening and I thought I'd tell you what that is!
Just to recap since I know you can't possibly remember what I write in this blog and post to Facebook-- I know mentioned in mid July I was finally going to see my neurologist/NF specialist about a tumor that was found in my lower left abdomen that was deemed to be an NF tumor...(even though the tumor was found in September and I was not told until the end of January by the MRI techs/beginning of Feb by my GI who gave me the results- I thought my January MrI was of my liver [I have a FNH on my liver and I thought I had to keep getting MRIs of it to get it checked out]) and if you don't remember I posted that, well, that's what happened! :)
Anyway, despite that freaking DRAMA it took me months to get a hold of my NF specialist a few weeks ago (I only see him in DECEMBER so it would have been nice to know in September....) and he took one look at the MRI picture and he said it was not an NF tumor. i really thought when I was going to see him he was going to say to me "yeah it's an NF tumor, just continue with your pain management team!" and I had mentally prepared myeslf to deal with this pain forever- but no- I thought he was going to say hi and bye to me for 5 minutes- no I was with him for like two hours. This is when my Facebook status updates about most of my updated tumor things stopped (other than about the pain)...
While I was there he got 2 other opinions (muscle disorder specalist, GI radiologist who know what NF is). Nope- not an NF tumor.
So I had a CT scan. Then a biopsy. The biopsy was terrible. They sedate you, but not enough to put you to sleep (it's a guided thing, they tell you what's going on while they do it), the novocaine they put in your back is supposed to be full proof, and since this tumor is full of nerves, inside nerves, and since the biopsy is basically a needle that sucks in tissue sample- yeah it was not full proof (it was - didn't feel the needle until it touched the tumor- oh and they went through my back not my stomach because my tumor more in my back- it's really complicated where my tumor is, actually- look up retroperitoneum ahhahaaa) Well, because that had me screaming, crying and freaking out (this is an excellent hospital, so they didn't do the test wrong, I am just one of the few on which the sedation won't work, due to the nature of my tumor), they did not get a proper tissue sample (of course they thought they did, and it took about 3 days of sheer torture of waiting for results that I thought would take 10 days of waiting for something like 'this is benign and we won't do anything about it because it's not cancer!')
Well, now I need surgery. No point for a second biopsy....
Now, with all my craziness of forcing my GI to have me do all these tests due to my pain, I have a great array of tests and a fantastic array of physical proof of my history. This is why my doctors are concerned:
June, 2010 MRI: no tumor in lower left abdomen
July, 2010 PET: no tumor in lower left abdomen
September, 2010: TUMOR IN LOWER LEFT ABDOMEN
SO IT GREW THEN. This is not characteristic of my NF condition; it is characteristic of cancer. it is not that the scan didn't SHOW the tumor. the tumor WAS NOT THERE.
It is all so weird since I have been in pain since around May 2004, yet nothing was found until September 2010, but I will say that the pain has only become INTOLERABLE since June 2010, and this tumor that suddenly grew explains why. I do less, I actually miss work (or I'm late), or I miss class (or I'm late)... so I am glad people are jumping on it now.
I am seeing a connective tissue sarcoma team. Sarcoma is one of the rarest cancers out there. IT IS UNCERTAIN IF I HAVE CANCER- I WILL NOT KNOW UNTIL I AM OUT OF SURGERY. But if it IS, sarcoma is more likely among people who have NF. It could be THIS or it could be a regrowth (metastasis of my stomach cancer). IT cOULD still be a crazy neurofibroma, but that's still unlikely, since those don't usually grow out of control. It could just be benign. It could be a GIST (which could be cancerous or not). This thing is in the middle of nerves, blood vessels, etc- not a good place. i've been in physical therapy because it has screwed with my leg muscles. They are just concerned 1) bc it grew so fast and 2) because it's just so GDMFSOB PAINFUL and it's gotten worse. It started as a day or so and now it's constant. Since June- pretty much constant. Actaully, it's been extra intense since April, but constant since the end of June.
The sarcoma center I am a part of is one of the best in the country, so I am lucky. I don't know many of the details of my surgery yet (the technique, the date, etc....like everything important) but I do know this:
They will open me up, remove the tumor and some surrounding connective tissue. they till freeze the tumor and test it. if cancer, I will receive radiation (I will be in a special operating room with a radiation device). They will do this while I am open, so that they can move my bowels aside so that my bowels aren't affected by the radiation. And then they will sew me up, and I'm off to recovery, and then I guess weeks later, i get more radiation.... . If it is not cancer, I don't believe I get any radiation. If it is uncertain, I get radiation just in case....
I was told the only times this operating room was available was the week of Aug 15 and Aug 22, but my consultation is Aug 15, so I'm guessing my surgery will be the week of Aug 22, unless my surgeon (who's an ass, a brilliant ass, but an ASS) says, "hey you want it tomorrow?" and I will be taking this vacation time to think about if I really want to have it done that week if I am asked....
I hope I can be ok to start classes the week of Sept 7. I will be doubled over but I will go! I hope! hahhaa!
And that's what is going on with me. Of course I will keep everybody posted. I was going to start telling everybody once I got my surgery date but I can't keep it in anymore. So. There.
Just to recap since I know you can't possibly remember what I write in this blog and post to Facebook-- I know mentioned in mid July I was finally going to see my neurologist/NF specialist about a tumor that was found in my lower left abdomen that was deemed to be an NF tumor...(even though the tumor was found in September and I was not told until the end of January by the MRI techs/beginning of Feb by my GI who gave me the results- I thought my January MrI was of my liver [I have a FNH on my liver and I thought I had to keep getting MRIs of it to get it checked out]) and if you don't remember I posted that, well, that's what happened! :)
Anyway, despite that freaking DRAMA it took me months to get a hold of my NF specialist a few weeks ago (I only see him in DECEMBER so it would have been nice to know in September....) and he took one look at the MRI picture and he said it was not an NF tumor. i really thought when I was going to see him he was going to say to me "yeah it's an NF tumor, just continue with your pain management team!" and I had mentally prepared myeslf to deal with this pain forever- but no- I thought he was going to say hi and bye to me for 5 minutes- no I was with him for like two hours. This is when my Facebook status updates about most of my updated tumor things stopped (other than about the pain)...
While I was there he got 2 other opinions (muscle disorder specalist, GI radiologist who know what NF is). Nope- not an NF tumor.
So I had a CT scan. Then a biopsy. The biopsy was terrible. They sedate you, but not enough to put you to sleep (it's a guided thing, they tell you what's going on while they do it), the novocaine they put in your back is supposed to be full proof, and since this tumor is full of nerves, inside nerves, and since the biopsy is basically a needle that sucks in tissue sample- yeah it was not full proof (it was - didn't feel the needle until it touched the tumor- oh and they went through my back not my stomach because my tumor more in my back- it's really complicated where my tumor is, actually- look up retroperitoneum ahhahaaa) Well, because that had me screaming, crying and freaking out (this is an excellent hospital, so they didn't do the test wrong, I am just one of the few on which the sedation won't work, due to the nature of my tumor), they did not get a proper tissue sample (of course they thought they did, and it took about 3 days of sheer torture of waiting for results that I thought would take 10 days of waiting for something like 'this is benign and we won't do anything about it because it's not cancer!')
Well, now I need surgery. No point for a second biopsy....
Now, with all my craziness of forcing my GI to have me do all these tests due to my pain, I have a great array of tests and a fantastic array of physical proof of my history. This is why my doctors are concerned:
June, 2010 MRI: no tumor in lower left abdomen
July, 2010 PET: no tumor in lower left abdomen
September, 2010: TUMOR IN LOWER LEFT ABDOMEN
SO IT GREW THEN. This is not characteristic of my NF condition; it is characteristic of cancer. it is not that the scan didn't SHOW the tumor. the tumor WAS NOT THERE.
It is all so weird since I have been in pain since around May 2004, yet nothing was found until September 2010, but I will say that the pain has only become INTOLERABLE since June 2010, and this tumor that suddenly grew explains why. I do less, I actually miss work (or I'm late), or I miss class (or I'm late)... so I am glad people are jumping on it now.
I am seeing a connective tissue sarcoma team. Sarcoma is one of the rarest cancers out there. IT IS UNCERTAIN IF I HAVE CANCER- I WILL NOT KNOW UNTIL I AM OUT OF SURGERY. But if it IS, sarcoma is more likely among people who have NF. It could be THIS or it could be a regrowth (metastasis of my stomach cancer). IT cOULD still be a crazy neurofibroma, but that's still unlikely, since those don't usually grow out of control. It could just be benign. It could be a GIST (which could be cancerous or not). This thing is in the middle of nerves, blood vessels, etc- not a good place. i've been in physical therapy because it has screwed with my leg muscles. They are just concerned 1) bc it grew so fast and 2) because it's just so GDMFSOB PAINFUL and it's gotten worse. It started as a day or so and now it's constant. Since June- pretty much constant. Actaully, it's been extra intense since April, but constant since the end of June.
The sarcoma center I am a part of is one of the best in the country, so I am lucky. I don't know many of the details of my surgery yet (the technique, the date, etc....like everything important) but I do know this:
They will open me up, remove the tumor and some surrounding connective tissue. they till freeze the tumor and test it. if cancer, I will receive radiation (I will be in a special operating room with a radiation device). They will do this while I am open, so that they can move my bowels aside so that my bowels aren't affected by the radiation. And then they will sew me up, and I'm off to recovery, and then I guess weeks later, i get more radiation.... . If it is not cancer, I don't believe I get any radiation. If it is uncertain, I get radiation just in case....
I was told the only times this operating room was available was the week of Aug 15 and Aug 22, but my consultation is Aug 15, so I'm guessing my surgery will be the week of Aug 22, unless my surgeon (who's an ass, a brilliant ass, but an ASS) says, "hey you want it tomorrow?" and I will be taking this vacation time to think about if I really want to have it done that week if I am asked....
I hope I can be ok to start classes the week of Sept 7. I will be doubled over but I will go! I hope! hahhaa!
And that's what is going on with me. Of course I will keep everybody posted. I was going to start telling everybody once I got my surgery date but I can't keep it in anymore. So. There.
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