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As the onc doc said, this is very rare, so little is really known about how it behaves or how it reacts. She will consult with a PA doctor who "specializes" in this kind of cancer problem if only because he gets to see more of them than most doctors.

She wants to set up several tests.

Basically this tumor could go 2 ways - common metastasis (for which she wants to verify my lungs are OK, though lymphs and colon were fine) or a kind of uncontrollable abdomen cancer. She is concerned because it was so huge.

So, there is still the issue of do I have any cancer, or is it a big risk that I should go on chemo to stave it off?

Let's just say I did not feel all reassured.

Prayers are appreciated!

Will continue praying for you. Keep your chin up. Cancer is such a roller coaster ride.

My first response was to learn all I could about my cancer (which led to challenges with my doctors which had definitive positive input on my treatments). My second response was to re-educate myself on nutrition and lifestyle strategies.

My battle is in the early stages so the jury is out whether or not these changes have been physically beneficial. Certainly my lifestyle changes HAVE been beneficial emotionally. It gives me a sense of control and direction that a cancer diagnosis tends to take away.

Spiritually, cancer has re-aligned my priorities towards a much healthier relationship with my Savior. I am thankful my church has a cancer support group called Harbor of Hope.

Am I glad I got cancer? No. Has God used this disease to bless my life? Unequivocally YES!

I pray the LORD continues to bless you and I as well as all other FR’s experiencing this disease.

Survivor Stage 2 Invasive Lobular Carcinoma

You might want to contact: http://www.floridaproton.org/ it is closer to you than MD Anderson and although they mostly treat prostrate cancer, they have branched out and take other cases. My husband had inoperable lung cancer and Moffitt cancer center gave grim survival odds and were not very nice. Now three years later and his tumor is still erased. He had “standard” chemo and proton treatments in Jacksonville, fl. Doc had to get original scans to compare with his last scan because there is nothing there, not a dead tumor, no scar tissue, nothing! ***** best treatment on the planet. We were referred there by another FReeper and are quite convinced it was life saving. Freepmail me if you would like more detail or would like to talk to us. I am also convinced prayers lead us to this place.

Two years ago I was having small blood clots in my urine.

Tests were conducted and it was determined that I had bladder cancer.

I underwent chemo for 4 months and surgery was scheduled to remove my bladder and prostate gland. The surgery occurred in March 2012. A new neo-bladder was created from a small section of my small intestine.

Pathology tests determined that I was “cancer-free” at that time. Follow-up exams determined that I am indeed “cancer-free”.

Tests will continue over the next few years and my latest exam and CAT SCAN last month reveal I am indeed “Cancer-Free”.

Prayers to Our Great Physician on your behalf will be presented to our Lord Jesus Christ for you.