A little over a year ago my husband, my 24 year old special needs son, and myself, moved from northern Michigan, where all of our family is, to Foley Alabama.  I have not had time to get out and meet and greet anyone.   I have been busy getting settled into our home and for the first time in my life, being a homemaker.  I was so thoroughly enjoying this new role and had a wonderful schedule going for myself.  Like laundry on Monday and clean on Thursday, Bank and Shop on Friday.  I had finally got to the point where I was settled enough to try and get us lined up with a family physician and etc.  I found a family doctor only a few doors from our local hospital.  He gave both my husband and I very good exams, as we were new patients.  As he was giving me a pelvic exam he said he thought he could feel a growth, he wanted me to have an ultrasound, which I did and then they wanted a MRI, which I couldn’t complete. Then he wanted to send me to an OB-GYN.  Well he didn’t waste any time as I had an appointment that afternoon.  The OB-GYN confirmed something was there. He gave me several options as how to find out what this was.  Ultimately it would have to be removed no matter what.  So I opted for surgery right away without a biopsy or anything.  I had been told several years ago I should consider a hysterectomy, but I put it off, as I didn’t want to take the time for recovery.  Well now was as good a time as any, since I wasn’t working outside of my home.  I was scheduled for surgery as soon as an operating room was available, which was about a week and a half later. [May 3, 1999]

My OB-GYN got a lot more than he bargained for!  Would you believe that as rare as L-M-Sarcoma is he had seen another case, much earlier in his career?  The pathologist had never seen it, but my DR was fairly certain of what he was seeing.  I was in surgery for 3 ½ hours, and he did what he could.  This mass was on my left pelvic wall and the fingers had reached out and around the ureter, and there were some problems there.  I guess everything surgically turned out OK.  It took several weeks for this mass to be evaluated.  It ended up at Stanford University, and was confirmed with the DR’s opinion of Leiomyosarcoma.

My doctor had mentioned Leiomyosarcoma to me in the hospital, but he did not tell me it was cancer, and I didn’t know enough to ask.  I just wanted out and home.  Even when he told me he was going to send me to an oncologist, I had to go home and look up oncologist, as I didn’t know what it meant.  I guess I have been in LA LA land or somewhere, but boy have I made up for the lack of knowledge in the past couple of months. The oncologist sent me for a CT scan and a bone scan. Well something showed up on the CT scan so he decided to refer me to MD Anderson for a second opinion.

I was at MD Anderson the end of June.  It was confirmed!  They sent me home for a biopsy as they couldn’t do it for another week and there was no point in my staying out there all that time. I came home and got the biopsy, which by the way was negative.  My oncologist here has tried repeatedly to contact the DR at MD Anderson, and has never had his call returned.  Just last week he presented my case to the tumor board and they said if there was to be any treatment they would recommend radiation.  Well I have an appointment with the radiation oncologist Monday morning, and then an appointment with the oncologist on Thursday.  I guess some 3 to 4 months later I will begin some kind of treatment.  I have not heard all the facts and have not made up my mind.  My thoughts are that since my surgery was not a cancer surgery done by a cancer surgeon, and because of the placement of the mass, and the size being 7 cm, and the difficulty removing it, I believe I should go ahead with the radiation therapy.  The oncologist said there is no reason to consider chemo at this point as right now there is nothing to treat, but of course it is only a matter of where and when it will return!

Monday afternoon [8/16/99] I went back to radiologist to be measured and pictured to begin treatments in the morning.  The DR tried to talk me into canceling or at least putting of our vacation to do the treatments.  When I refused he asked me if I could start tomorrow.  He called other Radiologist at the University of Alabama, and they confirmed that I should start treatments ASAP.

He said if I waited to start treatments until I returned from vacation [10-3-99] I might as well not bother as to much time would have passed.  Since this was the only treatment offered, I took it.  I am updating this today being 8/28/99, and things are going fine, except I believe the diarrhea set in today.  I have taken one imodium and it seems to have stopped it, momentarily, anyway.  I have had nine treatments to date.

September 1, 1999- DR Plager from MDA called at 10PM-Better late than never I guess!  He said he thought I was doing the right thing by having the radiation, but he also thought that I should do chemo.  He suggested finishing my radiation, taking my vacation and then do chemo.  He thinks that I should have a chest CT and bone scan right away.  I guess I would feel better about having the scans now, rather that waiting until the end of October.  He also said he would call DR Tan back tomorrow and discuss this further as he had talked to him today.  He said because of the size of the tumor being 7cm and because it was high grade, he was recommending the chemo also. 

September 7, 1999- I had a chest CT and a bone scan at South Baldwin Medical Center.

September 8, 1999-Results of scans is clear!  I also talked to the patient advocate at MDA and told her DR Plager had never called DR Tan after I had spoke to him.  I also asked to have a different physician assigned to my case.  She said they will do that but for right now we should follow through with DR Plager as he has started this treatment plan.  She is supposed to call me back by Friday.

September 23, 1999, I finished Radiation therapy.  It actually was a breeze.  A little Diarrhea, but I think only due to my eating habits.  If I followed the diet, no problem.  I was extremely fatigued some days.  But all in all I felt very well!

After many phone calls and a long time later, today, October 12, 1999 I finally have a new DR at MDA, DR Burgess, and a Nov 1, 1999 appointment.  I will be getting a new Pelvic CT Scan and chest X-ray October 25.

I had the abdomen    and pelvic CT and the chest x-ray October 25.  Everything was clear! 

I saw DR Tan October 26, and he told me that DR Plager had called him last week and still was planing to give me the chemo and wanted to start it right away.  DR Tan told him he wasn’t so sure that’s what I wanted to do, and he felt that I needed a break, as I had just recently finished radiation.  He also told him that he thought I was going back to MDA to see a different DR.  DR Plager said that was highly irregular, but I could still do the chemo.  I told DR Tan that I will listen very carefully to DR Burgess, and I will weigh out everything, before making my final decision.  I will see DR Tan again on November 9, as long as I have returned from Houston.

My meeting with DR Burgess was great.  He is a very nice man, he doesn’t pull any punches, but he is very informative, answers all you questions, and told me like it is.  I was very pleased with DR Burgess, and his nurse, especially after DR Plager.  He examined me briefly, and then talked to me.  I recorded the appointment so that I could refer back to what he had said.  I wish I had started the recordings much earlier in my appointments.  My cousin, Nancy, was there with me.  DR. Burgess asked me what he could do for me.  I told him I was there for a follow up visit after radiation and to make sure everything was OK.  I also told him there had been some discussion on me having chemo and I was not in agreement with it.  After discussing several issues, he said he probably would not recommend chemo for me, #1 I didn’t want it, #2 I had radiation and #3 I was six months out of surgery.  He said there may be others right there in the same clinic that would have a different opinion and I was welcome to go elsewhere.  I told him I was very happy with what he had told me, and I didn’t want another opinion.  He also wanted me to make sure I knew the chances I was taking by not having the chemo, I told him I understood and I was willing to take the chances involved, as there is no guarantee that chemo would do anything anyway.  If there is nothing there to treat, why treat it.  His statement to that was we don’t know if there is anything there or not, and we would not know if it would help if there was.  He just wanted me to be sure that I was satisfied with my choice of not having the chemo, and would not be sorry later down the road if the LMS comes back and be sorry that I did not do everything possible to avoid recurrence.   He also said I did not have to come back unless the LMS came back.

Tuesday November 9, I saw DR Tan and we went over everything and he was satisfied with the choices.  He said I should see the OB-GYN every six months and I will have scans every three months, alternating the chest CT with a chest x-ray.  He said it was an awful lot of dye to have the chest CT every time.  I will also have blood work every three months.  We discussed my back problem and decided to send me to Pensacola to an open MRI on Monday morning.  He said they will go over the results with me before I leave.  I just wanted to be sure we could rule this out as being part of the LMS.  I will know more on Monday.  I have an OB-GYN appointment on December 6, and will have more scans in January.

The MRI of November 15, 1999 revealed a herniated disc.  I was so relieved that it was not LMS related!  I will follow up with DR McLeod November 24, 1999.

DR McLeod suggested we do nothing about the herniated disc, as long as it wasn’t bothering me.  I guess if it doesn’t get any worse I can live with it.

New scans January 17, 2000 Ct Pelvic and Abdomen and Chest x-ray, all came back clear.  Had appointment with DR Tan Jan 18, and he said I was doing very well and we will do more scans in May, which will make it a year out of surgery.  Then for the next year we will continue with every three months and then if everything stays clear we will go to every 4 months.

April 14, 2008
My nine year anniversary is just around the corner.  I  have scans April 29.  Wish me luck! My onc says I can go to annual scans after 10 years.  I told him we will talk about it.  I am just not comfortable with annual scans.  That is just to long to go in case of reoccurrence.  A lot can happen in a year.  If it were to return it could be all through your body in a year.  I think I like the 6 month scans.