Radical Surgery To Fight MY Cancer REVISED

OK, I have to revise this post. I have been mixing up Nebraska and Vanderbilt. So, to set the record straight, I am going to Nebraska. I think too much is going on. Sorry about the confusion. 🙂

Well, Nebraska is circling again. I had all but given up on them and it seems that I may still be a candidate for radical surgery. In case you are not aware of this, I went to Nebraska seeking a second opinion regarding my carcinoid cancer. Originally, I had been referred to Nebraska by other carcinoid cancer patients who had surgery done by Dr. Eric H. Liu. Unfortunately, he has left Vanderbuilt and moved on and so I was a bit worried that I would be running out of options. Fortunately, Dr. Vargas works there and has a ringing endorsement from Dr. Liu. So, off I went to seek an opinion about radical surgery to fight my cancer. I was excited because they have an entire department set up just to handle carcinoid cancer.

They Fell Off The Map

Well, I spent a hefty sum traveling to and from Nebraska. More than I had. I was examined and they had all of my records and I was told that surgery was a possibility but they needed to review my scans,  consult with the carcinoid board and that they would get back to me. They asked me to get new scans and have the results sent to them which I did. And then….nothing. For months. Nothing. I tried calling, emailing, smoke signals, Morse code, carrier pigeon…..nothing! On top of that, I was starting to feel like I was getting the “run around” when I finally did get in touch with somebody. And then…

They Called

So, I angered my current oncologist by going to Nebraska. I guess maybe he felt threatened or unappreciated? I have no idea. After I pressed him for one of the tests that Vanderbilt had requested he got angry and actually said “No, and if you don’t like it then they can be your doctors.”. Can you believe that?! I smoothed it over but I was starting to think I was going to end up with NO doctor at all. And then Nebraska called. I was shocked. I had all but given up on them. As it turns out, they wanted the tests and needed further access to my medical records. They were working in the background on my case but never communicated that fact with me. OK, I thought. I’ll roll with this and see where it goes.

I’m Still Being Considered

Yes. I’m not kidding. After all of this, I’m still being considered by Vanderbilt as a candidate for radical surgery to fight my cancer. How radical is radical? A huge chunk of my liver would be removed, maybe lymph nodes, a giant section of my intestines and, as I understand it, anything else they find and can remove without making my condition worse. It looks like I’m on my way back to Nebraska for further tests and more details but it looks very promising. They will remove what they can so, I’m wondering if I will still be on chemo in the end????

The Final Twist

So, the final twist in this saga is that Cancer Treatment Centers of America contacted me and we are off to visit them first. We are going on the off chance that they may propose something less invasive or more effective or both. Isn’t that crazy.  Dates are still up in the air but I’m sure they will get back to us soon. UG!

Wish Me Luck,
Ed – To find out how to use my images on your blog for free – Click Here

scrollwork

carcinoidcancerbadge

 

 

 

16 Comments

  1. Wow! First you are the invisible man and now you finally got some attention. Really nuts! But at least someone seems to be listening. Prayer does help

    • When it rains it pours. Well, the bright side is that I have appointments…..the flip side of that coin is that they all happened at the same time which is very stressful.

    • Thanks…..it is soooo frustrating. Honestly, I was told surgery was not an option when my largest was a bit over 4 cm. Now, it’s over 12 cm. Can you believe that? Well, at least somebody wants to try something other than the most conservative approach. 🙂

  2. glad to see you got some answers although the attitude of your existing docs is appalling. I do not know your precise position and what your scans and biochemistry say but surgery is known to offer the best survival prognosis for metastatic carcinoid. Normally the primary hangs around the terminal ileum but this may not be the case with you? A standard surgery would be around 3 feet of small intestine (you have 21 feet or so) and a right hemicolectomy (the ascending colon en bloc with ileocecal valve and appendix (these have to go otherwise they would be hanging on their own unconnected to anything!)). I did hear of some specialist surgery whereby they can sometimes save the ascending colon. Whilst they have you open they try to get as much out of the mesentary – mainly lymph nodes and any desmoplastic reaction (fibrosis) that might threaten to occlude blood routes etc – they may even need to reconstruct certain blood routes as part of this procedure. Liver metastasis removal is a standard operation but they are constrained by quantity (two third is around the max) and risk – i.e. mainly how close certain tumours are to blood routes. I had my abdominal and liver surgery separate because they had quite a bit of work with fibrosis to do. They normally whip out your gallbladder as a routine derisking measure against future problems (mainly gall stones from somatostatin analogues). They sometimes also carry out liver embolisations before and/or after liver surgery.

    I hope you get some traction?

    • You want to know the craziest thing about my current doctor? I think he really cares!!!! I don’t understand him.

      I think you have summed fairly closely to what the doctors at Nebraska have discussed with me. You really have a great command of the subject. Thanks!!! May I ask who would be removing the lymph nodes…..if you happen to know. When they are done I will still have cancer in my liver and bones so, I am wondering if I will still be on chemotherapy? I’m also wondering if they can follow up with something like the nanoknife later and get everything out of my liver? Questions….questions……questions.:-)

      Thanks again Ronny!

      • lymph nodes in the mesentary are normally dealt with my the same surgeon doing the intestinal work. However, there are lymph nodes in various places – do you know where the suspect ones are? I’ve had additional surgeries for lymph nodes in my left axillary (armpit) and left Supraclavicular Fossa (clavicle).

  3. So many things to think about and decipher to find the best road. I can only imagine the stress levels. We’re behind you 100% on your decisions. You have your own cheering section here in Bama. Team Ed! We love you!

  4. Wow, that’s a lot of information! Are you considering either Vanderbilt or Nebraska? How will you make the decision? Will your local doctor still work with you after the surgery? I hope you get some good answers – sounds like a lot to think about – no wonder it’s stressful! Let me know if I can help with anything – I’ve been through some of that surgery.

    • The plan….let’s see if it works out this way….is to go to the Cancer Treatment Centers of America for a second opinion. Then we are off to Nebraska for a full workup and, depending on what I hear from Cancer Treatment Centers of America, surgery. I would like to continue with my local doctor but I think he’s gonna give me the “boot”. Feel free to share anything….I would greatly appreciate it. You can comment here and you have my private email too Thanks for the good thoughts Beth. 🙂

  5. Pingback: My Experiences With Nebraska Medical - Carcinoid-Cancer.com

Leave a Reply