Newly diagnosed: Epithelioid hemangioendothelioma (EHE) Cancer

Hi Carey,
That's too bad about your cancer diagnosis. How awful! I would suggest that you do a lot of research online about your cancer and the suggested radiation treatment and it's side effects and how good it is for this type of cancer. Also research chemotherapy and immunotherapy treatment in relation to the type of cancer that you have. Are you certain you have this cancer? Maybe you need a second opinion just to be sure. Do you have symptoms? If you do, research those also. When I say research, I mean searching on Google and the Mayo Clinic website. The Mayo Clinic is the most reliable source, but there are also some good resources on Google too.
My husband had lung cancer. He recently died in July. But he lived 14 years with lung cancer. I did the kind of research I'm suggesting for you and it helped his decisions as to what kind of treatment he did or didn't take. Keep in mind that it's your body and your money. If you feel you don't want a certain kind of treatment then don't do it.
One thing that helped my husband immensely was eating properly. He ate a lot of very good quality red meat; that was high in antioxidants and iron. Preferably, Allen Brothers brand. (You can find it on Google. Don't be shocked by the prices. It works!) Your body will be weakened by the cancer. It needs the good quality iron in the meat to fight back. My husband also combined that with a lot of good vegetables and fruit. He also ate good quality seafood. The only place now that you can get good quality seafood is from Iceland. The rest is all polluted. Even Alaska! When that tsunami hit Japan a few years ago, it polluted the water in Alaska, Washington and Oregon. But they won't admit it. I live in Washington State. I will never eat their seafood now even though I ate it all my life. Also, my husband ate no prepared foods such as frozen dinners and we never ate out. We made everything from scratch. Read food labels. Eat those foods with mostly natural ingredients.

The thing that will help you the most is to pray to God and ask for his help with your situation. He made you and he can fix you! You don't need to go to church to find God; although church is very nice. Just talk to God like he's your best friend and he is!

I hope everything works out well for you! I'll say a prayer for you.
PML

Hello @careysmith and welcome to Mayo Connect. I have also had a rare cancer diagnosis, while different than yours, I really understand the questions and anxiety that come with these rare diagnoses.

As I am not familiar with Epithelioid hemangioendothelioma, or EHE, I looked up some information on Mayo Clinic's website. I would encourage you to read it so that you have some background information. Information and education about any rare diagnosis is really important in order for you to adequately advocate for yourself. Here is a link:
https://www.mayoclinichealthsystem.org/search-results?term=Epithelioid%20hemangioendothelioma
Are you seeing an oncologist who is considered experienced in Epithelioid hemangioendothelioma?

I would highly recommend a consultation with a Mayo Clinic oncologist who specializes in this cancer. Here is a link with information about an appointment, Clinic appointment.
http://mayocl.in/1mtmR63
If, for any reason, you cannot been seen at Mayo Clinic, I would suggest that you contact the American Cancer Society (ACS)to see who they would recommend in your area, here is a link to their website, https://www.cancer.org/support-programs-and-services.html?msclkid=904d2990f39217133a204ea388348ca1&utm_source=bing&utm_medium=cpc&utm_campaign=Bing_ACS_BR_All_Donation_Generic%20Alpha&utm_term=american.

Did this diagnosis come about because of a growth on your ankle? How are you feeling? I look forward to hearing from you again.

@careysmith So sorry to hear of your diagnosis for a rare cancer. My appendix cancer in the past was equally rare but while still rare numbers are increasing so knowledge and treatments are improving. I relate to the difficulties of finding an appropriate oncologist who is either knowledgeable about your type of cancer and the best treatment option regimes.

I have also been fortunate in making contact with others around the world who share my type of cancer. I wonder if you might find a trusted EHE group on Facebook.

Wishing you the best with your treatment ❤️‍🩹

Hello,
I am sorry I can't offer much advice as I do not know this type or even much about the cancer I do have (well, hopefully 'HAD') but the onee thing I can say I think the best medicine of all is YOU. Tell YOUrself you will not let this monster rule your life. Tell YOUrself you will show it who is boss. Tell YOUrself it is not going to slow you down. Lastly, use the PO'd method. Positivity Only. Tell YOUrself it is just a blip in your life and when you get done showing it is who is boss, you are going to have a way better lif than before cancer.
Lastly, you are at the right place. The Mayo is a place of magic. I don't call my doctor Dr I refer to him as Magician.

Does anyone else have this EHE cancer? I had a tumor in my ankle that ended up being a malignant tumor in my ankle vein. I was diagnosed with EHE cancer, and it has spread to my lungs. Just wondering if anyone else has or knows anyone who has this cancer.

hi @careysmith, I think you started radiation this week. How is it going? How often do you get treatment?

Hi Colleen,

I actually start radiation 12/2 as I still have a cast on from my surgery where they removed the tumor. I get the final cast off next Monday and am thrilled about that!

Thank you for checking on me. I really appreciate it.

@careysmith, I was wondering if you had had surgery for the ankle, so that answers that question. Will the radiation be targeted to the ankle or the lung? Or both?

This round of radiation is for six weeks, five days a week, targeted on my ankle. I will see a thoracic surgeon in February to see if surgery is advised and next steps on my lung.