IDC and Marfan Syndrome

Irony

Marfan Syndrome is an inherited disorder of connective tissue affecting 1 in 5000. It affects the eyes, skeletal system, skin, and heart. I was diagnosed with Marfan at age nine and genetically confirmed at age 40. In March 2000 I had open heart surgery to repair my mitral valve. I currently have an aortic root aneurysm that is being closely followed.

I was diagnosed with IDC in August of 2016 at age 44. It is small, er+/pr+ her2-. Initially I was going to go the lumpectomy/radiation route. After meeting with a radiation oncologist, I decided on a bilateral mastectomy with sentinel node biopsy to be performed on Sept 19.

There was just no solid research on Marfan and radiation. The cancer is on my left side and is very lateral. The radiation oncologist said that a small part of my heart and lung would be radiated. Since I will be looking at heart surgery in the future, I just did not want to take the chance.

I've only been in contact with one other Marfan patient that had breast cancer. My hope is that if another is diagnosed, she/he might find this thread.

RobinLiane

I see your post is over a year old, but I am hoping to connect to other women with Marfan's. I have yet to be formally diagnosed but I have the physical characteristics and have recently learned that my ascending aorta is dilated ( 3.9 cm. Normal is 3.0)

I have DCIS and radiation is recommended but I am concerned that this may weaken my aorta.

Nj, if you are still in community , I would love to hear your story.

Moderators

Dear RobinLiane, Welcome to the BCO community.We are glad that you reached out to out members. You can try sending a private message to Irony. You can also do a search in the blue tool bar to your left and use the words mar fan syndrome. It will produce other posts that contain those words and hopefully lead you to others. There appear to be older posts but it is worth a try. Let us know how you make out. The Mods

Whirlaway

RobinLiane, sorry that you find yourself here. 

You can also check on heart valve forums. My husband was/is a heart valve patient (not Marfans but 10+ years post valve surgery). . When he first was diagnosed I was a member on those forums and noticed several ladies with breast cancer as well.

You also should consult with your cardiologist regarding radiation. I hope your aorta stays stable for a very long time!

Irony

RobinLiane, I'm so sorry I didn't see this earlier. I am here. It is my understanding that the radiation should not affect the aorta. The radiation is directed to the area of the cancer. My cancer was very close to my chest wall. My doctor was confident it would not affect my aorta, but was concerned more about radiation to my lungs. He still believed he could do it safely. Bilateral mastectomy was my choice because I didn't want to risk it. My aorta is 4.6cm. At 5.0 they will operate, so heart surgery is in my future.

I am available if you need me. If you did email me, I didn't see it, but I will check again.

I'm sorry to hear of your diagnosis. Please let me know if I can help.

RobinLiane

Thank you so much for replying to my post. After talking to my surgeon and radiologist, I decided to go with lumpectomy and radiation. they said there is no evidence that mastectomy patients live longer than lumpectomy patients and as you know there is nothing much about Marfan's and radiation out there. I am unable to get in to see the Marfan's doctor until March. Fortunately, they tested me for about 16 different cancer genes and I don't have any!

Irony

I am sure there are many people that have had Marfan and radiation....it just hasn't been documented in a study. At the end of the day, you need to do what is best for you. I am an ultrasound technologist that specializes in breast. I actually found my own breast cancer. It did not show up on the mammo due to how far back it was and because of how dense my breasts were. Lumpectomy and radiation is a safe choice made by many. It just didn't feel right for me.

Best of luck with your upcoming surgery. Please keep me informed!

TeaAndCake

Hi

I have Marfan Syndrome and was Dx with breast cancer 2 years ago aged 43. I also had heart surgery aged 39, and have a mechanical aortic valve, and aortic root replacement. I needed a pacemaker as a post procedural complication and am 100% reliant on it.

My breast cancer was right sided, which was fortunate because rads can theoretically damage pacemakers. The radiation oncologist gave me a weaker dose over more fractions to reduce the risk of damage. I sailed through rads with very few SE's. I had a LOT of pacemaker checks (every day of my 23 day course).

I take warfarin for my mechanical heart valve and keeping my INR in check during chemo was a bit tricky, but I managed to get through it. I had Herceptin too, and fortunately my ejection fractions held over 50% - just about - so I could finish the course. The only treatment my team weren't keen on was breast reconstruction. I needed a mastectomy because I had 80mm DCIS in an A cup breast. They encouraged me to go for a simple mastectomy without recon to reduce surgery time

WorriedMe77

My dad had Marfans he passed away of a arotic dissection at 72. We ( his children) have been encouraged to take a genetics test.. I have never taken the test because I don't look like my dad he was extremely tall thin and had a lot of the physical characteristics and cardiac issues... The Only issues I've had is my shoulders dislocateand the lenses in my eyes have dislocated