My Timeline for LMS

Time Line:

September;

 /9/2001: Pain in side first occurred. (yes; two days before the Towers)

Primary care Dr. at that time didn't take them seriously and wound up in emergency room.

Scans reveal mass in abdomen, misdiagnosed as benign fibroid tumor.

Hysterectomy recommended.

November: 

Hysterectomy reveals tumor is much larger then expected and is cancerous; uterus not the source of tumor. Source was the retro-peritoneum. Pain was caused by it growing so large it involved itself with the ureter; causing extreme pain.

Surgeons wind up scraping tumor particles off with their gloved hands in desperation to remove as much as they can as the clock winds down on a safety window.

I'm informed of the situation when I awaken. Biopsy reveals it is a grade 5 tumor.

One physician in the hospital in misguided intentions comes to me separately to tell me I have no options or hope as LMS is untreatable and fatal. “Take that last vacation, get your affairs in order”

I got really angry and afraid. I've never understood what he was thinking.

December– March/2002:

 Quest to find some information ..and hope...begins. A friend of the family who worked in a medical library does research for us and we begin reading about my prospects; which don't look too good.

I visit oncologists throughout Massachusetts looking for information. One was a gynecological oncologist I'd been sent to by mistake who made me an appointment with an oncologist closer to me.

Another misread the biopsy report and calls me with the good news is was all a mistake. This prompts the first and only time I've gotten hysterical. Calls to other oncologists reveal shock at her stupidity and we continue on the quest.

I go to Dana-Farber in Boston and I'm told there is no hope for a cure or treatment but they still want to treat me with the strongest chemotherapy drugs out there to see what happens. I try not to despair.

I then meet up with the local oncologist. I'd almost canceled this appointment as I was at a point where I didn't think anyone would have anything new to tell me; proving Never Give Up.

I decided to see what he had to say. He then sent me to the new local Radiation Oncologist. Who looks me in the eye and tells me I'm not going to die. They are having good luck with the new Radiation technologies and he's treated it before. Outside of Dana-Farber he is the first Oncologist who has ever seen a patient with non Uterine LMS. I'm shocked and feel that little bit of hope begin to grow.

April - June: 

I have, I think, 9 weeks of radiation pointing at the source of the tumor: the retro-peritoneum.

I then try to go on with my life.

2003: 

 I've forgotten the exact date but they discover a small tumor in my right lung and remove it. No further treatments required.

2004: 

a repeat of above but in my left lung.

2006: 

A small tumor removed from my waist line.

November 2010: 

treated for Lyme Disease.

March 2011: 

two tumors in the liver. One in my waistline, one near the base of my neck and another at T8 in my spine.

After over four years LMS seems to have come back with a vengeance.

June: 

two procedures two weeks apart using radio ablation.  to destroy the tumors in the Liver. Apparently successful (see 2012)

November: 

 Removal of the tumor on the waistline.

January 2012: 

Tumors on the neck and spine are removed. A steel plate is placed on the T8 to strengthen the bone after some of it was removed.

Scans following this show that one of the liver tumors from the ablation in 2011 has returned as well as the start of 7 other tumors.

At first it is discussed that Chemotherapy is the only course. Consultation with my Radiation Oncologist and Surgical Oncologist changes that and other means are discussed.

February: 

5 weeks of radiation on both the neck and spine areas.

I do very well; side effects are minimal. 

March: 

An embolization of my liver performed on the returned tumor in the liver and other arteries to some of the other tumors are blocked.

Scans will reveal in another month how successful this was. Embolization or radio ablation will be used on the other tumors in the liver depending on how successful the former was.

April:

Follow ups on spine show there is no return of tumors and the steel plate and screws are secure.

I'm told, as far as the spine goes, to lead my normal life.

Cat scans reveal some of the tumors are shrinking from the Embolization; Ablation tumors are doing nothing. Nothing is good; LMS grows quickly normally.

July:
Scan results for the Embolization and radio ablation are good. Embolized tumors are shrinking. Ablated tumors are apparently dead or at least are doing nothing.

Will be scanned again in a couple months.