Finding a Specialist

Over the past 8 months, I have had the privilege of being the Director of Patient Support for the Caring for Carcinoid Foundation. Over these months, there have been many times that patients, family members and friends of patients have contacted me. Most frequently, these individuals do so in order to find more information on carcinoid/NETs. The number one complaint that seems to accompany this request is that their physician knows little to nothing about carcinoid/NETs. The sad truth is the majority of these people are correct.

There are very few physicians who are well versed in diagnosing and treating carcinoid/NETs. And yet, this is not the fault of the most physicians. Doctors are humans and one cannot expect them to know everything especially when it comes to a disease that is considered to be as rare as carcinoid is. However this does not mean you should sit back and be content that your physician knows little to nothing. There are experts out there; physicians who specialize in treating patients with NETs and who are interesting in discovering a cure. These are the people you need to see. If you are struggling to find such a physician, please do call CFCF at 617-848-3977 or email info@caringforcarcinoid.org. We are here to help.

In most cases, your physician should be willing to refer you to a specialist. All you need to do is ask. In the case that your physician refuses to do so, you need to ask why. If your doctor gives you some cockamamie excuse like there is nothing that can be done or there are no specialists, go see someone else and do so quickly, but if you are given something legitimate, take time to consider it. If you still desire to see someone else, a second opinion may not hurt.

A few tips that many patients have found helpful when finding a carcinoid/NET specialist.

• First, remember this is your life you are dealing with and you need to take care of it.
• Learn as much as you can about the disease and the specialists involved.
• If your physician tells you he/she knows nothing of the disease, ask for a referral to someone who does.
• If you physician tells you to take the wait and see approach and you are not comfortable with this, ask for a referral to another physician. There is nothing wrong with getting a second opinion. Even if you are comfortable with the wait and see, it might not hurt to make sure.
• Do not give up hope. If you are discouraged, talk to your family, friends, other patients and us.
• Be persistent! As my mother always says, “it's the squeaky wheel that gets the grease.” Sometime you just have to be willing to ask one more time or one more person in order to receive the answer you are looking for or to get the treatment you need.
• If you have struggled to receive a diagnosis and are now being treated, PLEASE do not sit back and do nothing. Go out and get involved in your local support group. Raise awareness of NETs so that others do not have to suffer. Here is a great brochure that I recommend you distribute to your local doctors office. If you would like copies of this, please contact me.
• Finally, I know that this is a ‘rare and incurable cancer’ but do not take no for an answer.

Breezy Point

This year, once again, I am training for the Breezy Point Sprint Triathlon in Norfolk, Virginia.
At my uncle’s suggestion, I competed in my first triathlon at Breezy Point four years ago. When my uncle mentioned that I do it, I never thought that the race would be much of a challenge; swim 1000 meters, bike 20km and run 5km more. And so, I signed up.

At the time, I was completely oblivious to what biking 20 km and then running immediately afterwards felt like. For those of you who have never experienced this, the sensation is equivalent to running 3 miles with cement blocks strapped to your feet. It's not easy and it sure isn't comfortable. Moreover, it hadn’t occurred to that I was no longer in the shape I was in years past. In college, I had been a competitive swimmer and a pretty decent runner. However, somewhere on the road since college I had gained 35 pounds and adjusted to living a relatively sedentary lifestyle.

I will not go into detail about the actual race experience because it really wasn't that pleasant, and I don't remember large portions of it since I think my brain has blocked the more painful parts of it. However, I will say that I spent a good deal of time in the transition area of the race (not really transitioning, but resting) and that 12 miles on a bike makes for a very long and uncomfortable period of time.

That was my first race. One might think that one time would be enough for me. However, I did the Breezy Point race again last year. This time because my mother suggested it. She didn't just suggest that I do the race, but that all 10 of her children do it.

You see, shortly after I completed my first triathlon, our mother was diagnosed with carcinoid cancer. We were all shocked and at a loss as to what we could do. I think everyone of us had always seen our mother as an invincible figure and never really knew how to respond to the news. Well, last year, we decided we needed to do something to raise awareness and funds. We were brainstorming and weren't really coming up with practical ideas. One person suggested we bike across the US while another said he would rather do a hunger strike than bike that far. We were all thinking of things that could draw attention to this rare disease. I think my mother, who is always the practical person, realized that a family of 10 regardless of what they do, tends to draw attention. And so, she suggested we all do the Breezy Point Triathlon and see what came from it.

Well, once again, I will not describe the experience in detail but I think it is safe to say that most of my family members had the same first experience that I did. However, everyone finished the race and we were really successful in achieving our goal. We had over 30 people participate (including our father) and we raised nearly $30,000.

And so this year, we are preparing (more or less) to do the race again. However, this year, I think is even more important to all of us since our mother is doing it. Last year, her physicians would only allow her to do the swim, but this year, she is bound and determined to do the whole thing.