Hi All i have missed u

[Sharon2714]

LOL i am back browsing again bevause my last onc visit went pretty badly
and i could not continue to be positive at that time
right now i am begging for a pet/ct to finally put my cancer to bed
see ... i thought mine was a sprint but with cancer it just is a marathon and
i really wasnt prepared .. my best friend is on this forum so i chose this one
for that little announcement ... and hopefully help others prepare
its okay to be optimistic .. it really helps !!!!!! you need your hope, faith, love
and strength as a base for the long haul .. i pray u all this and more

okay they had a tumor board and sent my path to a blind second opinion
result was small b cell lymphoma (darn)
but the people on the tumor board overrode the second opinions opinion LOL
3 pathologists, 2 gyn oncologists and a regular ob/gyn with a nurse coordinator present

the second opinion was done by a pathologist who specializes in gynecological cancers
so i am begging my pcp and blue cross/blue shield for a pet ct or at the very least a
consult with a hematologist .. will know tomorrow

sorry ladies .. it wasnt that i didnt care ... i just wasnt myself

big squishy hugs
love
sharon

[Sharon2714]

Laney i so wish i could get on estrogen replacement or the right supplement or something ... unfortunately my doc wont clear me for it yet .. not until all the tees got dotted and the eyes got crossed LOL ... yes i got the hot flashes like i was living inside an oven .. it is so funny cause i break out in a sweat when it comes on ... well not funny haha but funny as in i really didnt expect it to do that

trudie, they sent my slides to a specialist in gyn cancers without telling him what he was looking at to get a "blind" opinion ... and thats what he/she came up with .. bad part is i wish they would have said something more about it to me or at least start talking about it with me in October (which was when they got the results) ... i talk to the American Cancer Society and they recommended calling the hospital records department and getting the path straight from them instead of through the docs office because everytime i order it ... it never includes the results from the last path ... my guess is it is misfiled so if i talk to the records folks they might be more likely to put their hands on it ... i wish ... here in america .. that they would give u a paper or something everytime u see the doc so that u know exactly what "doctorese" they are saying

i know u and know that each of us have had such a variety of issues with this .. for some it goes in one direction and for others in another but all of us started right here LOL with all of the same main theme .."why am i not getting any answers?"  what are they telling me or what arent they telling me ... then finally we hit the post comment button in the tinies t of hope that someone has gone thru this before us and we can follow their lead :)
I love this place and i love u all
sharon

[TrudieC]

Sharon, how on earth did they get from your original diagnosis to possible NHL?  I hope we can give you the kind of support and inspiration that you've given to us all.

[Laney8463]

Hi Sharon,
So nice to see you post. You sure have been through alot. Wow, I hope things are looking up for you. I do know that lack of estrogen can cause thinning of the hair and brittle nails. Have you had your thyroid checked though? Just a thought. Are you able to take estrogen? It sure has been a life saver for me.
I miss hearing your inspirational words... God Bless you
Laney

[Sharon2714]

ty ty for ur kind words and thought provoking questions
i went to the doctors office yesterday and cried for three hours and now i feel great
the path report he told me about in JANUARY was from the slides that he got
that second opinion on in OCTOBER ... i misunderstood the oncologist to mean
that it was nothing to worry about it is the ... guess what ... the wait and see
approach for three months aaarghhhhhhhhhhhh .. test me please .. bc/bs will pay for
a pet ct if he decided its a medical necessity but an undue expense if the wait and see
approach reveals nothing .. oh and another thing .. he asked me if i was of african american descent  .. these people can be so confusing some times .. why not talk to people in just plain old american ???? i KNOW he went to Yale .. he doesnt have to prove it all the time LOL ... i will always respect him for saving my life in July :)

now all i want to do is make sure it wasnt for naught and that i am going thru this because people plan on following up on it ... so i have an appointment on feb 3rd to see my primary care provider .. hes gonna sort thru the onc paperwork and see if he can find a justification for a pet ct now as opposed to waiting ... again ...
oh and i get more blood drawn on february 6th (they were trying to make the timing convenient for my long drive

regardless since the ovarian cancer was low malignancy and the  b cell lympoma (if i have it) is a low malignancy .. timing is only for my peace of mind and not because they feel they have to rush to treatment ... and thats all i got for now

so my question is ...have any of u had issues with ur fingernails getting thinner and loosing half the volume of ur hair only 7 months post hysterectomy ?? i have tried looking for that one and cant

ty for ur prayers .. i am living proof that prayer so so so works ... and i know that on february 3rd whether i should get a pet ct sooner or later and that is tremendous peace of mind .. take a page from my book please everyone .. if ur not getting answers just start crying ur eyes out .. and dont stop until u have an appointment :)

i had a lot to say .. heaaven forbid i ever get to talk to any of u on the phone .. it'll take at least half a day :)   :)  

love to all and prayers to all who ask for it and especially for those who dont
love
sharon

[fungirl1011]

Sharon, you know how much I have missed you right???  I sent you a PM a few minutes ago.  I am so upset with your docotrs and with the insurance company.  I am wondering if you could have some blood work done that would tell you if you have small b cell lymphoma.  I don't understand why the onc botherd getting another opinion when he was just going to disregard it.  It makes me SO MAD!!!  Is it possible to get all of your reports and get yet another opinion?  Stay strong, and know that I am praying for you all the time.  Hope to hear from you soon.  Love, Kasie

[ireneo]

Sharon - how did I miss this news? I'm so sorry you're doing battle with this and with BC/BS. So even if the doctor says you NEED a PET/CT scan, the insurance folks may not pay for it? I understand if you just say you want one but the doctor should be able to tell them what's needed. I hope it gets settled soon.

It's good to see you again.  Irene

[TrudieC]

Sharon, we have so missed you and worried about you.  I hope this can be cleared up for you very soon so you can have a proper scan and get the peace of mind you deserve.  You are in my prayers.  Love ya, Trudie

[lvfrogs]

Oh Sharon,I am so sorry to hear this.  I wonder why they overrode the second opinion? What is your onc saying? Can't he tell Blue Cross/Blue Shield that it is medically necessary for you to have a Pet/Ct?  I was so happy to see your name/post but I am sorry to hear this. Let us know what happens!!! Praying for you, Colleen