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 - 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
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.
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!
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
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.
Kelly, we all love you and are obviously so heartbroken for you. I will keep you in my prayers and pray for healing. I can't imagine what you must be going through, but please know you have a community of people standing behind you. When you need to vent, we are here. Wish we could give you a great big group hug!!!
Thank you so much everyone. This community has always been and continues to be a big source of support for me since I joined.
They do think that I have both - MS and carcinoid syndrome.
Right now, I just don't know what to think. I guess, the good news is that my brother is going with me to my appt, whenever that may be. Maybe they can help him, too. My plan is to call the oncology office late Mon afternoon to try to get an appt. By then they should have received the referral from my doctor's office.
And in the mean time, I'll try to get all my things in order to take with me. My ct scan and report, my cardiology report, my skin biopsies reports (they said they don't typically see what I have, unless someone has cancer or some sort of compromised immune system), & probably that one pic of my red face, etc. I just feel like I can't get in to talk to them soon enough.
I will be lifting you in prayer daily and praying for the Lord to bless you and your family with daily courage and strength,and wisdom for the doctors too!
I'm so sorry to hear this is happening but I know the Lord will prepare the way for healing and recovery for you.
Please keep your faith and know you are not alone.
My sympathies go out to you and your family as they go through this journey with you. I understand the anxious waiting to talk to the oncologist (bravo on your advocacy) on Monday. My sugggestion is to channel that energy into something positive.
Write down your game plan. Write your questions down, convince yourself that you can handle your job responsobillities. You can, you have red hair, we redheads (or shades thereof) can dig in and handle whatever we are handled. Collapsing after the superhero efforts happens but we look good while we do it. Attitude is everything!
Cry and let your emotions flow! You have been through so much! Let your partener hold you and help you grieve. Then on Monday you will be ready to start this battle that you ARE going to win!! You've got the collective forum behind you!
Sending many hugs, virtual hand holding, hugs and love,
I am so sorry sweetie ((((HUGS)))) , I can't even imagine how you must have felt on that phone call, and how you must feel now. Know that we are all here for you, whether you have the MS part or not, we want you to keep coming.
We can support you, and give you a shoulder to rest on.... and we would be honored to do that....
My heart goes out to your family, as they have been through so much waiting for the dx...... and you must be in a very cloudy spot.
I too am going to read up on this, and hoping that maybe we can learn something that may help to support you.
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!
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.
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.
Ahhh, sweet Kelly, I'm so sad to read this (sniff...)! I wish I could reach through this keyboard and hug you - you'll just have to accept my sentiments.
I'm thinking good thoughts for you... ((((Kelly))))
I am a brand new member on here and I know your post is old, most likely you will never see this but my mother is in the same boat as you (MS and a recent carcinoid syndrome diagnosis.) Just wondering how you've been doing battling the two conditions?
Hi Renee, thanks for asking. Medhelp actually notifies you when someone makes a comment on your post. I wish I had more time to spend on here - the people on this forum are awesome. :-)
My mom died from carcinoid syndrome so it's always in the back of my mind. I'm on disability now - I don't know how I worked as long as I did. It is difficult having both (actually I have more medical conditions than these 2 big ones). I'm taking 3 shots a day for the carcinoid & then my MS one. The symtoms (symptoms) for both conditions aren't good. I'm forever at doctor appts or having scans. I constantly feel sick & have a fever, etc, etc.
I'm heading to Iowa for 4 days for a special trial scan they only have in 2 places in the country (Galium 68 PET scan). And to see an oncology/endocrinology specialist there. They'll be my 4th oncologist for carcinoid that I'm seeing. Many many doctors are involved. Between all my conditions I've had over 100 medical appts so far this year.
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