Update

Hi all~

I'm sorry I haven't posted, I understand that there's been a couple threads asking about me (awww, warm fuzzies!).  I actually haven't been on OH, just so much going on during the past week.

I got my CT scan back that I had previously taken of my pelvis & abdomen.  I had had a chest xray on the same day & the CT tech had accidentally (divine intervention??) also done a CT chest - all with contrast.  Those are the results I got back this past week.  It showed that I have four anterior mediastinal lymph nodes swollen, a cluster of masses centered around my mesenteric lymph nodes (behind small intestines & outside of the abdominal cavity itself), a cluster of masses around my retroperitoneal lymph nodes (above my rectum/ back wall of pelvis), and a 7.1 cm long chain of masses running from my pelvis towards my hip - this essentially means that there are tumors growing one right after the other along the length of my lymph vein.  All are up to 2.9 - 3.2cm in diameter as the largest of each of the sites.  Remember that I also found 4 - 5 masses in my neck, which was biopsied this past Thurs.

I also had my PET done this past Wed & got the results on Fri.  It scanned from the top of my head to my knees, so it covered all of the lymph nodes.  It showed all of the spots that the CT scan were "hypermetabolic", meaning that those masses were eating the injected glucose at a much faster rate than the rest of my cells, which strongly suggests that it is some type of cancer.  Since they are all on my lymph nodes/ veins, this indicates lymphoma, type unknown.

The surgeon said that he sent the biopsy out to both the local pathologist and a second pathologist at a larger facility b/c he figured the local one would seek a second opinion and that would save time.  I have a f/u with my hematologist this Thursday to go over all of the results & hopefully (maybe) the biopsy will be back by then.  Knowing the cell type is extremely important for treatment choice and knowing prognosis/ average outcomes.  I have a couple of indicators that suggest I should also get a bone biopsy done & I expect he will place an order for that this Thurs. 

I already know that it is considered a stage III with "B" symptoms - indicating advanced symptoms and generally, it is considered to be in an advanced state/ stage.  If it has spread to my bone marrow, then it is considered Stage IV.  More importantly, though, I need to know the cell type.

I am keeping in mind that I won't known the cell type until I get the biopsy back, but some things that I can't help but think of b/c I have looked into.  Hodgkin's is the best type to have, but seldomly does it spread below the diaphragm.  Based on the largest mass and the fact that it is in the middle of the "chain" of the 5 lymph nodes going from my head to my pelvis, my cancer probably started at the mesenteric node site.  I found a large study that cited only 4 - 5% of those lymphomas were classified as Hodgkin's while 35 - 40% were classified as non-Hodgkin's.  I also found 2 other articles that stated the majority of lymphomas involving the mesenteric node were follicular non-hodgkin's lymphoma.  That is the one type of lymphoma whose treatment outcome, or prognosis, has hardly changed in the past 30 years.  Given my stage and other blood markers, IF IF IF it is follicular NHL, the 5 yr survival rate is only 51% and the 10 yr survival rate is 36%.  IF IF IF that should be the case, **I** am going to be one of those 36%!!! . . . . but, it also scares me & makes me very sad.  NOT hopeless, but scaired and sad all the same.

I feel a great many different emotions right now.  The bottom line is I have always thought of myself as a fighter and survivor, I'm a little "Shee-ra" in disguise!  I'm an optimist by nature.  I'm going to be one of the people who live a long time.  That's not to say that I'm not scared or angry.  I feel like I just started living my life again in many ways now that I have spent this past year as a thin person.  God forgive me for saying this, but I you're supposed to worry about getting cancer when you're old, not NOW!  It's not fair.

Another thing - I don't have internet at home anymore, so I might not get back to this posting once I leave for wor****il the next day.  I know that a lot of people have been swinging critters and praying for me, all of which I am very grateful for.  I appreciate all the support offers I have gotten and I'm sure when things calm down, I will call those who have kindly offered their ear :)

Thank you so much for the update Lisey, I was just thinking about you while driving home today.

I wish you nothing but the best.

Take care of yourself, please.

Thank you, Kayla.  I will do my upmost to do exactly that :)

I've been thinking of you Lisa. Call when you can.  

((hugs))

--gina

I will call soon, Gina, I'm just still in the absorption phase.  I very much appreciate that you are there when I need you!

You sound so strong and I'm sure you're going to fight this with all that you have. Sending healthy and happy thoughts.

Sheri (aka mrsmeyerson)

Thank you, Sheri!

Lisey,
Thank you for the update. Many of us have had you in our thoughts and prayers. Update when you can,

Sending thoughts and prayers your way. You are ABSOLUTELY going to be one of those long term survivors because you ARE a fighter.

You betcha!  Thank you.  BTW, I really like your avatar!!  Tinkerbell's just so cute!