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

[Lulu54]

Kelly,
This whole community would like nothing better than to give you more hugs, hold your hand, and walk through this with you. I  hope you will remain around here and allow us to do so, virtually.

I am so proud of you to speak up about the oncologist you want to see and not just be pushed into the system.  You have learned enough from here  to direct your care, and although it will be tough, you must continue to be your own advocate.  

Here's hoping you see the specialist soon and can quickly develop a treatment plan.  As for the job, you are in one tough spot and I have no sage advice to offer.  Is this a large company?  I believe the size (number of employees) dictates a lot of who they are allowed to respond to health problems of employees, but I might be wrong.

hugs,
L

[torikat32]

Kelly, I am saddened by the new diagnosis but finally I hope you have the answers so that you can fight the disease head on. please keep us posted we are here for you when you need us

Kat

[sandythegeek2]

Oh Kelly. I am so so sorry. You are an inspiration to me. We are all here for you. Now I feel stupid for crying when my neuro told me that I might have MS. I wish I could sit with you and hold your hand and just be there to comfort you in person. You are in my thoughts and prayers. Hugs

Sandra (Sandy).

[ku111]

I am so sorry for all you are going through.  Many hugs from me!  You are well versed in what you are up against, know where you need to be and have a great support system from here.  You are a step ahead.  Now time to concentrate on YOU.  Gather all the positive thoughts and strength from those around you.  I am wishing you the very best in this journey!  Please keep us posted.  I am here for you any time!

[RazCarver]

Oh Kelly, I am so saddened by this news. I don't know what to say.  It's good you know a doctor that has knowledge and experience with this. Wish there was a way to sit quietly with a friend in cyber space to bring a small measure of comfort.

[doublevision1]

Kelly - I'm so sorry to hear this, what a blow this must be.  I'm glad you spoke up about the specialist you want to see; you want and need the best care and attention possible.  This is just such a shocking turn of events.  Take care xo