You have WHAT? Explaining MDS

By Connie Connely

2 min read

Just my luck to get something no one understands! "You have WHAT? MDS? Don't you mean MS?" people have said to me.

No, I have a type of blood cancer called myelodysplastic syndromes (MDS). "I heard you have bone cancer," an acquaintance said when she saw me. I knew why she thought that. MDS is a type of blood cancer caused by bone marrow failure.

I explained MDS to a friend over the phone, and I told her it used to be called preleukemia. "Oh, well, it's good you don't have cancer yet," she said dismissively. I explained that I did have blood cancer because my bone marrow did not produce enough red and white cells. I read that one in three patients, MDS can progress to a rapidly growing cancer called acute myeloid leukemia (AML).¹

MDS explained

On June 2, 2017, my oncologist told me the bone marrow biopsy results two weeks earlier. A bone marrow aspiration is when they stick a needle into your bone and draw out a bone marrow sample. (Marrow is the spongy tissue located within the middle of certain bones.) Not awful, but not a walk in the park either. I had never heard of myelodysplastic syndromes. I had to learn how to pronounce it, spell it, and explain it. Myelo is a Greek word meaning marrow. Dysplasia is a medical term that refers to the abnormal appearance of cells when viewed under a microscope. Myelodysplastic syndromes are some conditions that can occur when blood-forming cells in the bone marrow become abnormal.²

You don't look sick!

I can't fault people who act like they don't believe me when I tell them I have cancer. I had a neighbor years ago who had cancer, and poor Wanda looked like a walking skeleton wearing oversized clothes. There are more than 200 different cancers. So consequently, our cancers will look differently. In the movies, they always show cancer patients as skinny and bald. I haven't been thin since I was eleven years old, and I have thick hair.

A young lady said to me, "I guess the worst thing about having cancer would be losing your hair to chemo." No, the worst thing would be losing your life! Hair will grow back. However, when I was young and had long blond hair like Hannah Montana, I would have thought the same thing.

So when are you going to get well?

I have had people ask me if I were in remission because they haven't heard me discuss treatments. They, of course, think I look healthy. "I thought your cousin was going to donate bone marrow to you," one of my former coworkers said. Yes, he did offer, but I'm not a candidate for a bone marrow transplant. There is no magic pill or quick fix for MDS.

Watch, wait, pray, and learn

Symptoms for MDS may include:³

Fatigue
Shortness of breath during physical activity
Pale skin
Dizziness
Increased risk of bleeding and bruising
Infection

My current treatment plan is "Watch and Wait." I have complete blood counts done every three months. Needles don't bother me anymore.

"Aren't you scared?" a young person asked me. Sometimes, yes. I try to remember to pray when I am afraid. The MDS Foundation sponsors webinars that have helped me learn a lot. I remind myself that I am living with MDS, not dying with it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Katelynn Bauer Moderator & Contributor
Hi Connie! Thank you for your explanation. I actually hadn't heard of this type of cancer until recently, I'm still reading up on it. I feel for you, I understand how frustrating it can be to relay all of this information to people who don't quite grasp what's going on. I hope you are doing well, please keep us updated on your goings on! Warm wishes, Katelynn (Blood-cancer.com Team Member)
1. Connie Connely Contributor
 I am doing well. I have my second COVID vaccine scheduled for later this month. Thank you for reading.
2. Katelynn Bauer Moderator & Contributor
 I'm so glad to hear that!
Ramae Hamrin Moderator & Contributor
Hi, <inline-mention user-id="3639405" username="Connie Connely"/> . I have to admit I didn't know what MDS was either until reading this, so thank you for writing about it. I naively thought that transplants were helpful for all blood cancers. You are so right that we are living with cancer, not dying with it. And needles don't bother me anymore either!
1. Connie Connely Contributor
 Thank you for reading!
Dennis Golden Moderator
Hi Connie - I hear you. And can not tell you the number of times someone has said to me,"You don't look like you have blood cancer." Yikes I often wonder what that statement means and how I am supposed to look. When I was first diagnosed I lost lot of weight in just 5 weeks. By the second chemo treatment my weight loss stopped and I began to gain a few pounds. Not tasting food was another issue and also something you can not explain to someone who has not been there. I do not know why but for some reason I did not lose all of the hair on my head. My buzz cut was a little more sparse but not that noticeable . That said my eyebrows and body hair disappeared. Even now some 3 months after completing chemo, the hair on my body is still making its own decisions on where it will reappear. I do not know which is worse - looking like something is up health wise or looking healthy with blood cancer. My daughter has dealt with the opposite issue. She has a rare skin cancer called LYMPHOMATOID PAPULOSIS ( LyP). It took dermatologists at Yale New Haven Hospital weeks to figure it out. The cancer impacts only 1 in one million people world wide and is characterized by pink or red-brown bumps, that ulcerate, and can appear on any area of the body. In the US it is labeled as cancer in Europe it is not – who knows why. Either way it is not easy to explain to someone what is going on with this disease. You can look fine one day and then a few days later look like you were attacked by an invading army of bedbugs LyP lesions typically heal with scaling and crusting, and some possible scarring. Her lesions usually heal over a 2 or 3 week period but can take as long as 8 weeks. No matter how you look at it – cancer is a challenge and each variety has its own unique way of presenting itself. All are difficult to explain to anyone who has not been directly impacted. Thank you for the article I was not aware of MDS and appreciate your explanation. Dennis(blood-cancer.com Team)
1. Connie Connely Contributor
 Thank you for reading. We never know what hidden struggles people have.
ruth Member
I to have MDS do oral chemo everyday and yes people say you don't look sick and it makes me angry I ask them what do you think I should look like.
1. Connie Connely Contributor
 I know. I tell them make-up helps.
Ronni Gordon Contributor
<inline-mention username="Connie Connely" user-id="3639405"/> Sometimes I think of the title of the old movie, "The Man Who Knew Too Much." I knew what it was! My brain seems to be stuffed with a lot of stuff. I guess it's because I've been in blood cancer world since 2003. I imagine it would be hard to tell people you are watching and waiting. We Americans want to just go ahead and fix everything! Glad you are doing well.
Connie Connely Contributor
Thank you for reading!
Shane.Lee Moderator
Connie Connely hope your doing well. I don't know how I'd react if I had to go "watch and wait" status. I was diagnosed with AML. Thank you for sharing your story with us. Best wishes. Shane (moderator)
Connie Connely Contributor
From what I understand, sometimes "Watch and Wait" is the best way to go because the chemo can do more harm than good, so it's best to hold off until absolutely necessary.
1. Yolanda Brunson-Sarrabo Moderator & Contributor
 <inline-mention username="Connie Connely" user-id="3639405"/>Hi Connie, I was on that "watch and wait" plan and totally understand the concept of not jumping into that chemo plan before its necessary to do so. I had a good run for 5 years until I became sick with something else that spiraled my numbers to start treatment. Thank you for bringing this point up.
Dennis Golden Moderator
Watch and Wait ...Yes it can cause a lot of on going stress and inflammation along with it comes the release of cortisol - the stress hormone that tells us fight for flee or freeze in place. The latter is ok in small doses but not good if it is ongoing and continuous. Cortisol impacts almost every part of your body and it is definitely not the best hormone for a cancer patient. They tell me I am in remission now from both blood cancer and prostate cancer. Sounds like good news ... but the ongoing need to visit and be tested by oncologists and urologists every few months can create a lot of stress ... If you allow it. I am now at the point where I recognize that all of the self created stress over my next of many "watchful waiting" visits does me no good. These days I focus on what is positive in my life. When I do my part, all of the monsters under my bed at night disappear and I actually can get a good nights sleep. Look for the good and a great way to start is turn off the news, read a good book, listen to music or take walk on a sunny day. ...Dennis(blood-cancer.com Team)
nyyankfan7 Member
Hi Connie! Thank you for your article. I was diagnosed with MDS in March of 2017. I was only aware of MDS because Robin Roberts of GMA had publicized her diagnosis and subsequent treatments to bring awareness to joining the BeTheMatch Registry. It really is amusing some of the things people say to you! Besides my low WBC, I had no symptoms that anything was wrong. The only explanation I received was probably from having had chemo treatments for my breast cancer which had occurred 13 years prior!! I was fortunate to come through the bm transplant successfully almost 4 years ago and just continue to remain cautiously optimistic about my future!
1. Connie Connely Contributor
 <inline-mention username="nyyankfan7" user-id="3650592"/> Good for you! Thank you for the uplifting post.
dan122 Member
Hi Connie, Thanks for your words. I´m terrified to join you with MDS one of those days. I already have Follicular Lymphoma. I had an auto BMT and It didn´t go well, my white blood cells got low (about 50% of the minimum). My red cells are ok. It is not evolving so until the pandemic is over here in Brazil I will stay low. No way I go to an allo transplant now. I just keep watching how it evolves. 
1. Doreen Member
 <inline-mention username="dan122" user-id="3642479"/> Always know we're here for you. Sending positive vibes. ~Doreen (Team Member)
Connie Connely Contributor
COVID has made for some rough days. Take care of yourself.

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