Is MDS Cancer?

[CatherineJ]

I found an interesting article published by Washington University in St. Louis about the genetic mapping of MDS and the progression to leukemia.

I have such a hard time explaining what MDS is to my family and friends, the only way they seem to take it seriously is if I tell them it is basically cancer, just in an odd form.



http://news.wustl.edu/news/Pages/235...ZUJWQ.facebook

[DanL]

Catherine,

MDS is really funny that way. You tell people that you have MDS, they have not heard about it, and because in many cases you look fine, it is assumed that it is not very serious. If you described it as cancer or leukemia, then it changes the view quickly.

Here's what I have found: the Leukemia and Lymphoma pamphlet on MDS states pretty clearly that MDS is a diagnosis of cancer. This makes sense since stem cells that are dysfunctional create dysfunctional blood cells.

One definition includes "involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body." MDS does not typically invade the nearby parts of the body, but neither does AML or many other leukemias.

Many of the hematologists and publications consider it cancer as well. The challenge and confusion comes from the way that people are informed about the disease which is variably described as a bone marrow failure disease or a pre-leukemia. This may be because of the observation that only about 25-30% of MDS cases evolve to outright leukemia.

Ultimately, I am not sure that it really matters whether it is called cancer or something else. It is a serious disease that affects quality of life to varying extents and may lead to leukemia or other life-threatening complications.

Hope this helps.

[Chirley]

My doctor told me it's pre cancer but I got a letter from the Federal Government telling me that I'm registered on the Cancer Registry.....go figure!

Regards

[bebop]

my Dad's dr called it cancer and his cancer policy paid when he passed so my answer is yes it is a form of cancer. if you do a search here you can find a link to an mds website that will send you free booklets that tell all about it.

[Greg H]

Hey Catherine!

I'm with Don on this one. It's cancer, because it fits the definition. And the study you cite makes it pretty clear that the genetic abnormalities that begin in MDS stick around in AML, which no one disputes is cancer.

I find, in telling family and friends about MDS, if I want to cushion the blow of the news, I talk about "bone marrow failure." If I want them to understand the seriousness of the thing, I use "cancer."

I often start with the former and move to the latter.

Take care!

Greg

[CatherineJ]

I think MDS is a cancer from the research I have done. It is a neoplastic disease, meaning there are mutations in a cell and that cell reproduces in a clonal and excessive fashion ignoring healthy cells around it. MDS just doesn't produce tumors, but neither does leukemia.

I usually also initially tell people it's a bone marrow failure disease, but I think the hardest part is that I look perfectly healthy and strong so people in my life have difficulty understanding it. When I was first diagnosed with MDS, some people said "At least you don't have cancer". They said this because the diagnosis was between leukemia, MDS, and AA.

My two best friends have registered to be marrow donors and have donated blood, but when I try to encourage others in my life I think they just don't understand how important the cause is to me or how serious MDS is. I'm not trying to get the people in my life to donate or register for me, I don't need transfusions or a transplant yet, but I want them to show their support for a cause that has grown to be important to me, or at least understand that MDS is something more than three letters. I wish I could be a donor.

I feel like many cancer sites such as stupidcancer.com or the American Cancer Society do not list MDS or do not consider MDS as a cancer. I know stupidcancer.com is for young adults with cancer and MDS is rather rare for young adults, so it may make some sense that it wouldn't be listed.

I wonder why there is a lack of conformity among scientists, doctors, medical resources and websites. There is always a lot of media attention and action around leukemia, but not as much for MDS. I wonder why there is a dichotomy even though the two life-threatening diseases are so very closely related.

The activist side of me is arising, I want to be able to do something about this. Sorry to ramble, I'm grateful for your responses and engaging in this discussion.

Catherine

[Greg H]

Hey Catherine!

I think part of the deal is that MDS only came to be considered a separate disease (at least in the US) in the mid-1970s. Before that, it was "pre-leukemia" and kind of a sideshow to the main event.

It's also a disease that primarily affects folks over the age of 70, and some of the symptoms could be chalked up to folks "failing with old age." But, now, significantly extended life expectancies mean we pay more attention to the diseases that affect the retiree set.

I agree completely with you that MDS is kind of second fiddle on more generalized cancer websites. Even the Leukemia and Lymphoma Society tends to give MDS short shrift.

That's why AA&MDS International is such a great organization. And I would bet they would love to help you channel your rising activism. You ought to give them a call.

BTW, given your interest in the topic, have you had a chance to read The Emperor of All Maladies? It's a fantastic book on cancer and the war on cancer. I reviewed it in a marrowforums post here.

I think you'd enjoy it.

Take care!

Greg

[Steve_F]

The American Cancer Society definitely considers MDS to be cancer. They have fact sheets and a package that will help you in your treatment plan. The package is tailored to the individual type of cancer and contains a LOT of information on the specific cancer and the current treatments.

They can be reached at 1 800 227 2345.

I wish you well !