OT - I Have Cancer - Carcinoid Syndrome

[anon07072023]

I received a phone call this morning from my rheumie/neuro office.  They had the results of my tests and wanted to see me today.  I asked if they could tell me over the phone, and the nurse said that the NP wanted to discuss the results in person.  I was so nervous, my hands felt like they were shaking.  I knew it had to be bad news.  At 4pm I was sitting in her office and she asked if I remember the urine test that I did. Honestly, I've done so many tests in the last few wks, I didn't know right away which one she was referring to.  Then she said the one that measures the serotonin.

Right away I knew it. I have all the symptoms for carcinoid syndrome/cancer just like my mom did, and just like my brother does – lots of unintentional weight loss, heart racing, low blood pressure, flushing, etc.  She said I tested high on my 5HIAA test which is positive for carcinoid syndrome (symptoms related to carcinoid tumors that have typically spread).  And my ct scan shows reactive mesenteric lymph nodes – which the tumors tend to spread to.    

She was going to send me to the same idiot oncologist that my brother went to. I told her, there’s no way. She said I can go to anyone I wanted.  Then I told her I was going to go to the same oncologist my mom was going to who specialized in neuro-endocrine tumors.  Carcinoid syndrome in really rare – only 2 in a million get it, and I want to go to someone who knows about it.  She’s at the Anschutz Cancer Center at the Univ. of CO in Denver.  

When she was looking her up on her computer (because I couldn’t think of the oncologist’s name) I started crying.  I thought I was doing really good, and then it just hit me.  She gave me a big hug and when I was leaving, her nurse gave me a hug.  

I just hope that I don’t lose my job/benefits before I can get in to see her.  It’s so hard for me to work right now. And on top of that, the other 2 people in my dept turned in their notice to quit.  So then it’s just me and the team lead and I have to learn all of their projects and all sorts of different software before they go (the next week), when I can’t even do my own job from day to day. It only took me an hour and a half to type this....  

-Kelly

[anon07072023]

Thank you all for your thoughtful words and your words of encouragement.  You all continue to inspire me.  Everyone here is so caring.  I hope you all know that it really means a lot to me.

[twopack]

Hi Kelly.  This proves to me once again that it makes almost NO difference whatsoever that we know a thing is possible, prepare for its probability,  or expect its confirmation.... we will still be as surprised and subdued upon hearing the words as if we had never suspected at all.

At the moment, all I can do is remind you that I STILL think it is a good thing to know the name of your opponent - even when it is carcinoid.  Your statement about being eager to see the new docs tells me you understand.  

I'm remembering the Christmas picture on your profile page.  It always struck me that the table for that day's celebration was round - a representation of the close circle of love created by the nearest and dearest members of your immediate family.  I know you are pulling together tighter than ever right now, each holding all the others in strong support as individuals and as a unified whole.

I visualize good things for you as always.  
Mary

[stillsearching1121]

I didn't read through all of the posts but I had to respond.  I had carcinoid almost 10 years ago.  I was very fortunate that they found my primary tumor and were able to surgically remove it and all of the tumor that had spread...as far as we know.  

The BEST carcinoid specialists are in New Orleans.  I have been to see them several times in my journey to diagnosis what is going on now...??MS, Lyme, etc? At one point we though maybe it was my carcinoid that had returned.

Anyway, I wanted to tell you to search for them. It's the Neuroendocring Tumor Program at Oschner Medical Center in Kenner, LA. Dr. Woltering, Dr. Anthony, Dr. Boudreaux, and Dr. Wang are all wonderful to work with.  They are actually in Kenner, LA at Oschner Medical Center.  They actually have a foundation and can provide a place for you to stay free of charge while having treatment there.   They have performed unbelievable/miracle surgeries on carcinoid patients.  

I hope you can find your way to them.  I wish you the best!  Feel free to PM me if you want any more info.  I'd be glad to help in anyway I can.

[supermum_ms]

Dear brave sweet kelly,

My heart aches, truely aches for you. Your news has shocked me and finding the words i want to say to you, are just not as forth coming...

Reach for us and we will pick you up
Reach for us and we will wrap you in our collective arms and hold you close
Reach for us and we will wipe away your tears, replacing them with smiles
Reach for us and we will help you through the good and the bad
Reach for us and we will lend you our strength and get you through
Reach for us and we will try to understand this time in your life
Reach for us and we will see you, feel you, hear you!

HUGS........JJ

[saucygrl]

I'm so sorry to hear your dx.  Remember that I am here in CO with you so if you need a hug, I'm here! ((HUGS!!))

Chris

[Sidesteps]

Ohh Kelly, I am so sorry. I know this brings up a lit of pain past and present. Hugs