Monthly Archives: September 2013

Giving Up is NOT an Option

I had an appointment the other day with a new oncologist. This is my 6th oncologist in 7 years. I am trying to find an oncologist who will listen to me. Someone who will or can explain their reasoning behind certain decisions. I want an oncologist who will work with all of my other doctors as a team.  I do not think this is too much to ask, and this is one cancer that is best approached by a team of specialists, sharing information and knowledge and conferring with one another.

My current oncologist knocks down suggestions made by my other doctors and gives no real reason. He has become very complacent and has stopped listening to me altogether.  When he thinks I am stable, he wants to pull therapy saying it is no longer needed. Then I find myself having to fight a physician to keep the standard of treatment and maintenance therapy in place for myself. The therapy (my twice a month Sandostatin injections) is the one thing that keeps me able to live a somewhat normal life about 60% of the time. It is the only reason I can leave the house. This random, misguided elimination of my treatment regimen has happened twice now and I don’t feel I should have to fight for something that is standard treatment.

I was hopeful when I left the house yesterday morning. I should have known it was going to be a train wreck when we hit horrendous traffic before we even got to the freeway. I called the clinic and let them know I was going to be late. They said no problem. Deep down I felt I should have canceled, but I did not listen to my inner voice. I found out later my husband also felt the same way, but he didn’t want to say anything. I don’t blame him really. I probably would not have listened.

We got there about fifteen minutes late, got checked in, and everything seemed to be fine. Then the doctor walked in and both my husband and I felt at that point it was not going to be good. The doctor had me go through seven years of what I have been through, which I was not really prepared to do.  Is it too much to ask to have a prospective new specialist physician to have read my charts, events, medical history, and followed my critical blood tests and care prior to a first appointment? I pulled it off as best I could and of course I left out a few items which might have helped.  Thinking back now, these overlooked event just would not have made any difference in the outcome of this appointment.

 When he entered the room, he seemed like he had better things to do. He even stepped out of the room to take a call and was gone for almost 10 minutes. When he did return I had to go over information which I had already covered. After that he then proceeded to tell me that he looked over my records and that there was no possible way I could be suffering with carcinoid syndrome. He said he had no doubt I had been suffering with something, but it wasn’t carcinoid related.

I was floored. This guy had no clue what he was talking about. At that point I felt it was in my best interest to wrap it up and leave. He then said something to me that just made my blood boil. He asked me if he arranged for me to get Sandostatin injections every 14 day would that make me happy? The implication was that he wouldn’t be following on this and that I would not be followed in oncology any longer.

This just kept getting better! Did he really just imply I was a drug seeker, requesting a medication that has no addictive properties whatsoever? A drug that in reality would have NO effect on a normal person unless they had the illness and in need of suppression of those related symptoms? I almost had no words. I wanted to come unglued at that point and tell him what I really thought of him. I was so hurt and angry.

I did not give him an answer and just listened to him as he continued to tell me things about carcinoid cancer that have either been disproven or that have been out of date now for past 20 years. I began to wonder if this guy was living under a rock.

I have been treated for this cancer/syndrome now for seven years. It is very well documented. I have had several instances of what they call carcinoid crisis during surgeries and procedures. How can they wipe out seven years of my medical history because two doctors have decided that there is no possible way I could have carcinoid syndrome. I don’t understand it.

I would have fought harder in that appointment but this doctor had his mind made up from the moment he walked in the room. There was nothing I could say to change it.

Now I get to do damage control. I need to see what my next step will be. I am afraid my next step will have to be arbitration with the insurance company. That can take 12-18 months and I have to get a lawyer.  At this point I am not even sure if I will be able to continue to get the Sandostatin that brings relief from the debilitating symptoms associated with carcinoid cancer.


Helping People Understand NET’s Awareness Day


NET’s Awareness Day (Neuroendocrine/ Carcinoid Cancer) is coming up November 10th.  I thought would do a post on symptoms of Carcinoid syndrome (caused by NET cancer/Carcinoid tumors). Along with that how it is so often miss-diagnosed as IBS or Crohn’s disease.

Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why they fail to catch it early. However as time goes on and traditional cures for IBS & Crohn’s fail to work. The patient gets even more ill and the doctor has a choice. He/she can continue to search for the real cause or as in most cases they just continue to treat as IBS and or Crhon’s.

Many people go for 5 years or more (in my case it was 6 years) before being properly diagnosed. Most are stage 4 by the time they are diagnosed, and by that time it has spread to distant regions. There is no cure for Neuroendocrine/Carcinoid Cancer by the time it has spread. The reason most are stage 4 and it is caught so late is because doctors don’t look outside the box. They don’t want to think maybe it could be something else more rare.

The reason most doctors do not bother to look into more rare causes for symptoms is one thing they hear over and over in med school.

“If you hear hoof beats, think horses, not zebras.” They are taught it is generally more productive to look for common rather than exotic causes for disease.

Most of the time people are finally diagnosed when they have Carcinoid Syndrome (after it has spread). The syndrome symptoms can actually be very alarming and scary.

Carcinoid Syndrome Symptoms:

  • Flushing
  • Diarrhea
  • Heart valve lesions
  • Cramping
  • Telangiectasia
  • Peripheral edema
  • Wheezing
  • Cyanosis
  • Arthritis
  • Pellagra

I was going to explain all the symptoms, but there are sites out there that would do a much better job at it. There are so many websites out there now dedicated to helping people with Carcinoid cancer (just wish there were more doctors). When I was first diagnosed there was very little information out there.

The website I am using for this is CarcinoidLink. It is set up specifically to help people understand Carcinoid syndrome and how to manage it. Also it has downloadable pages for people to track symptoms so they can take them in to show their doctor. Helps them know how the therapies are working or not working.

The biggest reason I wanted to use it for this post is because it is easy to find information and easy to understand. Here is the link.

Carcinoid Link:


Check it out and feel free to ask questions. Email me if you like. The more understanding and awareness we get out there about this the more doctors will educate themselves. They will have to take it more seriously. With education they will be able to recognize it and maybe treat it in people before it becomes stage 4.

Neuroendocrine/Carcinoid Cancer is a horrible disease to live with. Right now here in the US we only have a handful of specialists and very few therapies to help us. If this were Europe we would have so many more options. They have therapies and procedures to prolong life that have been used for 10 years or more, that here in the US are just now in clinical trials.

I know so many who have paid to go over seas for treatment because of the limited options here. Most would not be alive today if they did not go. The therapy I am referring to is called PRRT (Peptide receptor radionuclide therapand) requires 3 trips to Europe. Each trip costs 10,000 US dollars. Most that I know have done fundraisers to go (some have used their own money if they had it). However this is not an option for most.

Over the past 2 years I have seen so many (10 or so) die from this. Some I knew some I just knew of. Being this is a rare disease you kind of seek out others who have it. It is like our own community and when one of us Zebras (as we call ourselves) dies it really affects the rest of us.

We do our best and live life to the fullest. Our ribbon is zebra striped (as you can see above) for the zebra. Last year I made this graphic and it is true. Our stripes do make us unique. We are a proud few and we are survivors.

I made this graphic last year and it is true. Our stripes do make us unique.