Just a quick background, a few months ago I went to then ER for what I thought was appendicitis. After surgery and pathology I got news I had a rare sarcoma, EIMS or Epithelioid Inflammatory Myofibroblastic Sarcoma.
Not many cases exist on this exact condition and the prognosis is pretty bad for most. Medications used for lung cancer can slow tumor growth, but from the sounds of it I’m a sitting duck waiting for them to grow back in such a manner that my organs fail. I’ve heard 12-36 months as an average, but stories or 5+ years, while rare, exist.
Symptoms aren’t really existent currently, although with a diagnosis like this i can be clear on a Monday and full of tumors by Friday. Feel free to ask me anything.
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Sorry to hear😔 and also sorry if this question is insensitive..have you made a bucket list?
Not a question. a sincere prayer that you have the longest time possibile with the best quality of life possibile and that eventually you will be a happy exception to the statistics. Love from italy
Fellow young adult with a rare stage 4 cancer diagnosis here.
I have no questions for you. But I want to say that my diagnosis is usually considered incurable, but after continued progress over the last 16 months of battling, my treatment intent has shifted to curative intent. Over the time I’ve been fighting I’ve met plenty others who have also beaten the odds. The human body can do incredible things, especially in young people.
Never let statistics define you. Nobody can tell you what your outcome may be until after you’ve exhausted all treatment options.
Best of luck to you.
Has it made you more religious? If no, what do you think regarding the afterlife, and are you open to explore the possibility?
I’m very sorry that you’re going through this.
What head space are you in right now?
Is there something you wish you had done more of or less of?
Sorry to hear this. How have your family reacted to this? Hope you have a support system around you as you go through this.
I don’t have a question. I work in cancer research. I just want you to know that we are trying our best to come up with solutions. And I am sorry there is not enough done yet. But I want you to know we will continue and won’t give up. And you shouldn’t either. Sending love and hope to you.🫂
How long do they think you already had it?
( Sorry for terrible news)
No questions. Best to you.
I also have stage 4 cancer (I am 38 with 2 young children) my biggest fear from my diagnosis is leaving my children without a mother. I was diagnosed almost a year ago. My biggest takeaway….the small shit doesn’t matter anymore, you watch people fluff their lives away, cancer has a way of seeing clarity in life.
Enjoy all the things, enjoy your favourite people, take the risks, be present.
Sending positive vibes to you, my friend.
Im so sorry OP
Oncologist here, talk to a sarcoma specialist and consider adjuvant therapy despite a lack of data. There will never be data in soft tissue sarcoma let alone a super rare sybtype.
No questions
Just sending you some hope
Seems like many people here are doing the same
Stay strong, you’ve got this.
No questions, I just wanted to wish you well. I hope you have plenty of support.
All the best with treatment plans. And keep fighting! Also take a good long holiday. Make a gofundme if you need financial support. Do you have a support system?
In remission from an “old person’s” cancer I got when I was too young. +1 to the poster who said all else equal, a young person’s response to treatment will exceed expectations. My question is how is your headspace and what do you find comfort in doing day to day?
How rare are we tslking? Treatable?
How do people react when you tell them what’s happening to you? Or how do they react when they ask how you are?
I never know how/what to say to someone who has a crap diagnosis, in case I make them feel bad or that I come across insensitive.
I’m sorry to hear your plight bro, stay strong and there are people thinking of you and rooting for you
Has anybody suggested a cause? Any doctors suggest a specific diet?
You are much more than a survival probability number and I wish you the very best for the future.
How are you dealing with telling friends and family about what is happening to you?
I’m so very sorry
I (34M) have stage 4 lung cancer. I’m not in a good shape right now, but I hope it will get better when I start a new treatment path.
No questions on my end. I just want to say that your answers to other people’s questions are exactly what I would answer, particularly the ones regarding spirituality, religion, and how hard is to share our diagnosis with people other than close friends and family.
Seeing this your answers reminded me that I’m not alone, and I really appreciate your courage in creating this AMA.
And to everybody with cancer that also shared their stories here, I wish you all a happy life despite everything.
I don’t have a question. Just want to let you know that I feel for you and hope to hear back from you in 10 years or so. I am not religious but if the well wishes of strangers can make a difference, you have mine in spades.
No question, but as a survivor of a rare head and neck cancer a bit of advise. If you are in the US get yourself to one of the better cancer institutes. MD Anderson (Houston), Sloan Kettering (NY), Dana Farber (Boston), or Mayo Clinic (Minnesota).
Did you have any symptoms, anything weird/unusual happening with your body and senses, prior to ending in ER?
My daughter had a super rare sarcoma removed at age 6. We caught it early but it was “single digits nationwide” rare and not a lot of data. She’s healthy and fine now 2 years later. You got this!