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litehouseangel
Posts: 2
Joined: Jul 2005

I have just been diagnosed with LMS. I have not yet had my surgery. Can someone tell me what is ahead for me please? I have been reading all over internet and it scares me. thank you

Nanz1's picture
Nanz1
Posts: 12
Joined: Nov 2004

dear litehouse. Hi! I was diagnosed with LMS in 2003. Number One don't go to the internet. a lot of the infor there is old and the data from the studies is OLD. First of all you will have a hysterectomy. That is not so bad. You will be on self injected pain meds into your IV. Not bad really. It does hurt some but not as bad as you might imagine. Then the LMS will be staged meaning they will determine at surgery if it is all contained within the uterus or not. If it is completely contained in the uterus and is not aggressive (low grade) that may be all the treatment you need.

I had stage 1 but high grade meaning it was an aggressive form. You will be presented to a tumor board after surgery and they will discuss the best treatment plan for you. My doctors suggested pelvic radiation. I did have that. I had a local recurrence of the tumor and had to have it removed last year. After that they suggested chemo. there is a new chemo for us Taxotere and Gemzar which was a breeze as chemos go.

But don't even worry about those treatments. If you are stage 1 with a non aggressive tumor (low grade) you may get away with only this surgery. I know how terrified you must be. I was just one big quaking blob of fear. You will be O.K. there is a lot of good news but not out there on the internet. That was the first thing I learned. Don't go there. Make sure your oncology team has someone on it who specialized in sarcoma treatment of go for the opinion of one. LMS is somewhat rare and you want the input of someone who is current on the subject. I am a nurse at UCLA and was treated here and they helped me to get the latest in chemo. I would love to help you through this time. check out my web page here: Nanz1 and e-mail me. I am 2 1/2 years out and cancer free at the present time and feeling well. I'm here for you lite. My name is Nancy (obviously huh?) Take a deep breath and just cope one day at a time. You'll be O.K.

Nanz1

litehouseangel
Posts: 2
Joined: Jul 2005

Hi Nanz,
I just figured out how to reply..:) hope you got my email with my thanks.

mia697
Posts: 3
Joined: Sep 2006

Hi, In July, I was diagnosed with cervical cancer. By the time the hysterectomy was performed, it was no longer cervical, but endometrial and cervical cancer. I had a radical hysterectomy with nodes in August. The washings and nodes were clear, but the margins too "skinny." It was stage 2B. Radiation was recommended.

I started radiation two weeks ago. While meeting with the RAD/ONC, I was told I also needed chemo since the histology of the cancer was of the papillary serous type, an aggressive cancer. My GYN/ONC didn't agree, so we had an independent pathology lab review the slides; we just heard that it is infact the aggressive type of cancer. So I am now facing an "aggressive" type of chemo. I have been told that I will not start the chemo until I am finished with my external and internal radiation. I meet with my MED/ONC next week to see what he is planning.

Part of my problem and question arises from my distrust of the medical community here in Las Vegas. I noticed that you are at UCLA, my alma mater. A few years my husband needed aneurysm surgery. We met with two surgeons here in Las Vegas, but their attitude and demeanor was such that we ended up having his surgery at UCLA. Not only did he have a gifted surgeon, but a wonderful recovery. In fact, the folks at UCLA found not one, but two aneurysms!

So my question: should I seek a second opinion regarding the chemotherapy treatment? I would appreciate your advice since you are familiar with the department and their resources. Thank you.

jcook50
Posts: 2
Joined: Jul 2005

Sorry I'm not certain what LMS stands for, and you'd think I'd know by now. But judging from where you are, plus the other reply, it must be some kind of uterine cancer diagnosis. After 5 years of abnormal bleeding, I was diagnosed with endometrial cancer in January '05. I had a complete hysterectomy (uterus, tubes, ovaries and 23 lymph nodes), through a vertical incision, in mid-February. Because the lab dissections of the tissue they removed showed (barely) Stage II, Type 1 cancer, they recommended radiation. I had three internal high dose radiation treatments (brachytherapy) in April. My prognosis is very good--somewhere in the high 90%'s.

My advice for now: The other person is right. You can really unsettle yourself by going to some of the sites on the Web. I think the people who go there regularly tend to be the people who have hard, continuing struggles. And they need and deserve to talk. But the people who get through their initial diagnosis and treatment with a good prognosis are just glad they survived, and they don't necessarily feel motivated to share their experiences with everyone. So, no, don't scare yourself on the Internet.

The surgery was hard for me--more emotionally than physically. I recovered quite quickly. I really, really didn't want to stay in the hospital, especially because I was in the surgical oncology wing and it was just like the Internet--stories that I couldn't afford to think about right then. I made myself walk as much as possible and tried to eat and drink what they gave me. I had the surgery on Wed. and left the hospital on Saturday morning. I had help (husband) at home. You will need it. Also, make sure you have a bed that is easy to get in and out of, because using your abdominal muscles is tricky for a bit. By the second week, I was cautiously resuming activities. I kept walking. One problem for me was digestion. I had a lot of cramping. It sounds terrible to get up and walk, but do it. It helps, I promise.

I worried a lot about the loss of hormones, and it was sudden menopause for me, but actually this has not been a major problem. I have slightly bothersome hot flashes, but they don't steam up my glasses or make me saturate my sheets with sweat. Very tolerable. No lasting sexual side effects from the surgery.

My radiation therapy was somewhat uncomfortable, but very survivable. They did three treatments on an out-patient basis. It doesn't burn or hurt. It's just that you have these tubes stuck in you and have to lie still for a couple of hours.

Ask a lot of questions. Most of the doctors who are dealing with problems of this magnitude are more than willing to sit there and tell you everything they know. Ask everything that worries you.

One more thing. Do not let people tell you the stories that occur to them, just off the top of their head, when they hear "cancer." It doesn't usually help. Pick very carefully the people you want to share with. People who will take the time to listen and who will offer exactly what you say you need. You have to stay focused to take good care of yourself through this and you don't want anyone, no matter how well-meaning, to scare, frustrate or distract you. You get permission to think of yourself first for a while.

All my good wishes. I know how terrifying the moments can be, but remember and believe in all the strengths that have gotten you this far!

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