I don't want to die

I was diagnosed with inflammatory breast ca 2007, treated with chemo, radiation and then had a bilat mastectomy hoping to prevent it from recurring. May 2009 I complained about knee pain, had mult MRI"s and they told me I had a bone bruse with edema of my bone marrow. I requested PET scan, but was told because I have fibromyagia, I would light it up and they wouldn't be able to tell what was what. Well, guess what? I have recurrent cancer with bone mets to my legs, heal, hips, back, skull. My Dr told me that they are going to treat me paliatively and that I only had 1-2 yrs to live. I don't want to die. There has to be something out there that they can do. Some type of program, trial that they are having success with. I think my Dr has given up on me.

[katarina777]

That is horrible, and I am so sorry.

The following pertain exactly to me: (except I had not bilateral mastectomy)

'I was diagnosed with inflammatory breast ca 2007, treated with chemo, radiation and then had a bilat mastectomy hoping to prevent it from recurring. May 2009 I complained about knee pain, had mult MRI"s and they told me I had a bone bruse with edema of my bone marrow.'

That's what I had two in my right knee and I first had PET scan and this was followed up by MRI. Turned out to be osteonecrosis and my right femur towards the knee was dying. Also the bone marrow swelling, it was so incredibly painful, but it was not cancer and which I had thought it was for sure.

I don't know what to say right now and am still in shock by your words. Maybe I will comment later.

You are in my thoughts very much,

KAT

[katarina777]

Oh, but my knee thing happened a year earlier. I was diagnosed with IBC in June, 2007.

[Karen99]

Hi.  Have you been able to find any experimental trials? Is there a Breast Cancer support group in your area?  

Please let me know how you are doing.

Karen

[starsouler]

(I have stage IIIa breast cancer.) There are clinical trials going on all over the United States for breast cancer, and I recently read an article stating some don't even open due to lack of participants! Don't give up. I know there are listings at the NIH.gov website, National Institute of Health website. I had also found a website that just kept track of clinical trials, I think it was www.clinicwatch.org, but am not sure. Have to go get zapped now(Gives a nice glow to my skin!) but hang in there, you can beat this! I will do some research and get back to you with good websites. If your Doc gave up on you, find another Doctor that won't give up on you! Sounds like yours does not know what else to do, so find someone who does...just NEVER give up on Yourself!

You Will Make IT,

Hope (it,s my name!)

[maybebaby29]

I'm not sure where you are but is there a good research/teaching hospital? They usually have clinical trials (like for Chicago, University of Chicago, Rush, Loyola, Northwestern are the top 4 for trials). I'm so sorry.

[jayhorses]

hey hows it going??? i am near L.A> and ucla has several trials? are you getting worse? have you tried a new DR.?? xoxojay

[GeezLouize75]

Go onto MD Anderson Cancer Center's (in Houston) website and do a self referral.  They could likely have a trial going on right now that would help you.  You DON'T have to have a doctor refer you to be accepted.  My sister and my aunt both did the self referral and was called within a day of filling out the information.  Good luck and God Bless you.  Don't lose hope and your will to live.  That is what will get you through....And of course, God.

[Cassandra309]

I highly recommend the book "Love, Medicine & Miracles" by Bernie S. Siegel, MD.  Although it is 20 years old, it is about "exceptional patients" who defeated terminal diagnoses with self healing.  According to him, your attitude, beliefs and actions can affect your actual outcome v. prognosis.  If you just accept what your doctor said about your life expectancy, he/she will likely be right.  However, if you work with doctors to participate in and influence your own recovery, so-called miracles can happen. I have stage IIIa and found the book to be incredible and I've never been a holistic type of person.  I checked the book out from the cancer library at my hospital.

Very best wishes to you.

Cassandra