Diagnosed with rare breast cancer (leiomyosarcoma) scared

Skylarxoxo

Hi I am 29 years old mother of two, last week I was diagnosed on 10/20/2016with a rare breast cancer called leiomyosarcoma of the breast chances of getting leiomyosarcoma is 0.0006%. I'm scared there is not much information out there and my doctor said he has never had a case like mine he is putting together a research team to figure out what to do next. So I am waiting on that go back in four weeks. since I don't have any family history or I really don't know anyone who has been through this I feel alone unsure and confused I don't know what to expect I don't know how bad it is. I am just in this waiting game with so many thoughts in my head. Just looking for some advice and tips. This is probably one of the hardest thing I might have gone through but I'm am strong enough to get through this I know I am. Just a little nervous almost feels like a blind date you just don't know what to

Sjacobs146

I am so sorry that you have to deal with this, but I'm glad that you found us, there is a great deal of support to be found here. Since your Cancer is so rare (from what I can tell <20 recorded cases), there may not be anyone around with your particular diagnosis, but some of the treatments may be the same. You will likely have surgery of some sort, lumpectomy or mastectomy. So check out the surgery related boards for more info. You will likely want a second opinion, so you might want to start lining that up, especially since there will be research that will need to be done. You don't say where you live, but I would recommend going to a large Cancer research hospital if possible (e.g. Dana Farber in Boston, Sloan Kettering in NY, MD Anderson, etc.). This ain't garden variety Breast cancer such as I have.

As for the immediate future, you'll probably be speaking to a Breast surgeon, medical oncologist, and possibly a radiation oncologist. They will come up with a treatment plan for you. Gentle hugs to you, and good luck with your upcoming appointments. I know that the word Cancer is very scary, but it's very likely that you will have a full life going forward. It's not the death sentence it once was, especially if it's been caught early

joyandpiece

Skylarxoxo, I am glad that you are reaching out during this difficult time. The emotions you are feeling are universal to all of us at the beginning of our journey - you are not alone here.

It sounds like you have a caring doctor if he/she is putting together a research team for you. That is great! That research may lead them to doctors that have the most experience with your type of cancer.

The waiting is not easy, but taking the time for your doctors to have a plan of action is important. It will give you time to research options and information, too. Only do this if you are comfortable with it.

My other advice until then is to get yourself a notebook and write down any questions that pop into your mind so you will remember to ask your doctor.

Hugs to you

lekker

Skylar - the general recommendation with any sarcoma is to be treated at a recognized sarcoma center.

http://sarcomahelp.org/sarcoma-centers.html

I'm not questioning your doctors but if at all possible, consider at least getting a second opinion with a team that has seen breast LMS (or at least LMS) before.

I just happened to send the link below to a friend in regards to her friend who was just diagnosed with uterine LMS.

https://newsinhealth.nih.gov/issue/oct2016/Capsule...

I'm so sorry you're dealing with this and I wish you the best as you get your treatment plan underway. Please come back and let us know how you're doing.

Moderators

Hi Skylarxoxo, welcome to Breastcancer.org. We're sorry this diagnosis has brought you here, but glad you reached out!

If it helps... we've found a post from Jennifer back in August that was looking for members with this type of cancer. If you want, you can contact her via Private Message by clicking on her username, and then click on the "Send member a Private Message" button. Here is her post in case you want to take a look: https://community.breastcancer.org/forum/137/topic...

Hope this helps!

The Mods

Skylarxoxo

thank you every one for the support and information I contact Jennifer I'm still waiting on a treatment from my doctor and a ct scan to make sure it did not spread and I am also looking into a 2nd opinion so I'm still in this waiting game

lekker

Skylar - thanks for checking back with us. Please keep us posted