Rosalie’s 20+ Year Journey with Leiomyosarcoma
My story started in 1981 when I had a hysterectomy to remove a fibroid the size of a 5 month pregnancy (12cm) with heavy bleeding. The doctor and I were both surprised it was cancer. He told me I was cured, that he sent a slide up to Boston General and he got it all. I was cured. Sure……I went on my merry way never getting chest x rays, never getting checked out at all except for pap smears every year. 11 yrs. later, I had to have breast surgery and had to have pre op tests. They discovered 5 nodes in my lungs. I had the breast surgery and I had breast surgery 3 more times for lobular cancer in situ. The doctor I went to for the lungs told me, after a lung biopsy, to go home and pray for the best, and expect the worst.
My breast surgeon recommended I go to Memorial Sloan-Kettering Cancer Center in NYC. I did, and the thoracic surgeon knew immediately it was a metastases from the uterus. No one made a fuss over it being LMS. I did not know it was so rare and hard to treat. I asked questions, got no answers. She did both lungs at the same time with a bilateral clamshell thoracotomy. Cutting down from the armpit under the breasts and across the chest up the other armpit. My tumors were hanging outside the lungs like icicles (spindle cells). Almost 3 years later I had to have the same operation for 4 more nodes in both lungs. This is a very painful surgery because it hurts to breathe in the beginning and the sternum hurts from being opened. Only thing was the drugs hyped me up so badly, I never slept and couldn’t rest in bed. This time, I asked for someone to come down and see me from the Pain Clinic. It was a big help. I had an epidural and the PCA pump. I don’t know why my first surgeon did not tell me I didn’t have to suffer the way I did.
I have never had chemo or radiation. I have a low grade LMS. I was very lucky that I could be a candidate for surgery. I have other health problems that do not allow me other options. I am lucky to be alive. I say it is luck because I have been neglected and not followed up, and I am still here. I have another node that grew back 4 mos. after my last surgery. How? No answer but that it happens….. it has not changed and the surgeon said it is too difficult to keep opening up a person to get to the lungs, so we wait and watch. There have been changes but not significant ones YET. My last lung surgery was 3 yrs. ago and the first 6 yrs. ago and I remain stable. The tension, surgical trauma and arthritis that has set in from all the upper body surgeries of all these years is finally getting to my nervous system. Dealing with my other health problems is a challenge too. I have an autoimmune problem called celiac disease. It requires a special diet. If I don’t stay on it, it could cause an intestinal lymphoma over a long period of time. I also have an IgA deficiency which complicates treatments too. This causes me lots of infections and a leaky gut syndrome (malabsorption)which allows many allergens to pass through the gut into my system causing multiple allergies.
I know a lot of you would say you would change places with me in a minute, but believe me, it is a tough road to walk when you have other serious health problems as some of you who have other problems know. My sympathies go out to all of you having surgery and taking chemo and with the challenge of other health problems to deal with too. It is not easy. Take care, be well, be strong. Hang in there. Miracles do Happen. I am still here.
Update: April 2000
My fight is ongoing. I had surgery to remove an 7 cm retroperitoneal tumor on March 8, 2000. It was encapsulated and taken out. No other tumors. It was LMS again. After almost 19 yrs, it returned to the scene of the original crime in the pelvic area. No two cases are alike and this has never happened before after so many years. I went back to MSKCC again. The tumor was growing out of a nerve and I feel lucky I can still walk. The nerve was removed along with the tumor. I have a little problem with the leg which I hope will resolve itself with time!
Update: March 2001
I had another recurrence in both lungs. It was discovered when I took my ct scan on Jan 23rd, 2001. I have 5 more nodules. Very small. I am going to try hormone therapy because the last tumor tested was progesterone positive. I am starting Megace which is an antineoplastic and anti-progesterone steroid hormone. If that doesn’t work, we’ll try Arimidex. I had not had a recurrence in over 5 yrs to my lungs and who would have thunk? Cautiously optimistic….trying to avoid another bilateral clamshell thoracotomy.
Update: November 2001
I have been on hormone therapy 9 months now and am stable. I have been taking Femara (letrozole) now for 3 months as megace was giving me digestive problems. I was reclassified as having endometrial stromal sarcoma because I have hormone receptor positive cancer (progesterone) that is responding to hormone therapy. I still have 5 nodes between both lungs but they have not changed at all. All women with uterine sarcomas should have hormone receptor testing on their tumors. You may be eligible for noninvasive treatment instead of having more surgeries.
Update: June 2004
I have been off the Femara for 3 months now and my scans show I remain stable with the lung mets. My cholesterol went sky high from this drug. Everyone who takes it should have their cholesterol checked, if they are not taking a statin or can’t take one. I will not be taking any aromatase inhibitors until such time as I get growth. I may or may not have growth as I have been on these type of drugs for 7 1/2 years. My body needs a rest just as people on chemo need a rest. I am stage I, Recurrent disease 4x (lungs, lungs, retroperitoneal area, lungs) Stable for 3 years. On June 24 I will be a 23 year survivor!
June 24th, my family and I celebrated a duel anniversary, my 25th year of survival of low grade myxoid LMS/ESS and our 50th wedding anniversary.
My lung nodules started to grow again after my break of 1 year and 8 months. I am back to taking Femara again but on a different schedule. I am taking it 2 months and 1 month off. This works for me. I am still stable with 5 lung nodules. I still am being followed closely but we hope to avoid some of the unpleasant side effect without resorting to other drugs.
I will be celebrating my 27th cancerversary June 24 and stage IV for 15 years with LG myxoid LMS/ESS. In 2000, after my retroperitoneal surgery, I was reclassified as having ESS(endometrial stromal sarcoma). I still have mixed cells. I still have more than 5 lung mets between both lungs and still taking Femara which is keeping me stable. I am on a different schedule to prolong taking Femara and to try to reduce the painful bones of the side effects of taking it. It exacerbates arthritis. I started this drug in 2001 and have been taking breaks from it. I will continue taking it for as long as it will work on a lesser schedule and not every day. 2 weeks on, 1 week off, 1 week on, 2 weeks off.
***Yesterday is gone, Tomorrow is not here, Live for Today!***
This CancerGuide Page By Rosalie Peipert. © Rosalie Peipert
Last Updated: June 2, 2004