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Pre-menopausal uterine cancer survivor

jilld
Posts: 3
Joined: Mar 2003

I am looking for women like nyself who have survived uterine cancer. I am 40 years old and had surgery in June '02 to remove a rare uterine sarcoma. While I've been very lucky so far, I live with it every day. I've read alot of stories about not listening to your doctor and going with your instict and I'm a strong supporter of that. If it had not been for my persitence, my doctor never would have agreed to see me on a Saturday with no one else in the office (it's not allowed in most states for a ob/gyn to do an examine without a nurse in the office)to do an emergency D&C which detected the cancerous tumor. Luckily my instinct proved right on, and they were able to operate and remove the tumor. However, I live with the fear every day that my cancaer will return. While I know that I am very lucky because I've heard so many stories about people who do not survive cancer, I also know that now that I've had cancer my chances of recurrence are seriously increased. And coming from a family where no one has ever been diagosed with cancer I feel like I'm on my own.

whuse
Posts: 1
Joined: Mar 2003

Although I am in my late fifty's I was told that I was not in active menopause at the time I was diagnosed with uterine cancer in May of 2002. I had my surgery in July of 2002. They did a complete laparosocopic hysterectomy removing everything. I had adenocarcinoma cancer of the uterus. The tumor cells had penterated 3/4 of the way through the wall of the uterus.Pathology found some cells on the exterior of the uterus wall. So it is unknown for sure if some random cells may have traveled else where. I guess only time will tell. The lymph glands that were removed were clear, their is some question as to whether or not enough were removed to get a clear picture. This is the oponion of second and third oponion doctors that I have seen since my surgery. My surgeon recommended only progestrone therapy as a follow up to the surgery. Then three month check up for three years followed by six month check ups for the following two years. The progestrone dosage was at a very low level. I was not even started on this until late Aug. or Sept. after a lot of pushing on my part. So I began to question the advice of my surgeon. I think he did a great job with the surgery, but the follow up care seemed lacking. I sought out the oponion of another doctor and then a third. A friend at National Cancer Institute had a doctor friend look at my records and he gave me a recommendation by phone. All these oponions held the same belief,that I should have also had radiation follow up after my surgery. At this point I was six months out from my surgery. But I did go ahead and have the (vaginal) internal inplant radiation . I took six treatments and compleated those last month. It went well and I had a wonderful doctor and staff who very kind and supportative. I am still tired from them, but tolarated the procedures very well. I feel very good about the future. I am approaching things one day at a time and give thanks for each day. I attended a class that the hospital here gave called. I Can Cope. One line that I came away with that I would like to share with you, is to live with the awareness of making a choice between, having cancer or letting cancer have you. I wish you well, this is something we both can and will survive.

Nasturtium
Posts: 1
Joined: Mar 2003

HI. I am home on sick leave while I recover from a complete hysterectomy. Having watched TV alot I guess I saw this site on an ad and gave it a try. Your message is recent and somewhat relevant. My doctor told me he recommended and endometrial biopsy even though my perimenopausal bleeding was normal. Well, the one percent chance of cancer was me! I was very lucky though in that it is all gone! It was caught extremely early. What is really sad though is that my mom had the exact same thing and somehow between all the things going on in my life it was completely sent to my subconsious memory. I am really tired and probably trying to do to much. My energy level is really low and I am really good at procrastinating these days. I had the surgery on Feb. 18 and they sent me home 48 hours later, so it is not quite 4 weeks. It is strange to even to admit to being a cancer survivor. I find myself doing strange things like on Sunday I walked out into the middle of our field (own 40 acres) in the bright sun and early spring weather, looking back at the land and our house and just breaking into tears. I would assume the hormones will do some strange things for quite a while but I wonder if anyone else has felt this way. Glad to talk if you would like. I am home for a couple more weeks. (I'm 47)

motahal
Posts: 24
Joined: Mar 2003

Hang in there, believe me, it does get better! I had a pre-menopausal husterectomy in March 2002, went home 48 hrs. after my surgery. I started radiation therapy 2 weeks later. I went back to work part-time 4 weeks after surgery because I couldn't stand being home. It was a constant reminder that I had cancer. I celebrated my one year post-surgery on March 11th, and the further away I get from it, the better I feel. I still suffer emotional effects from all of this, and I am sure that it is normal, so don't ever feel bad about expressing your feelings. Please allow yourself time to recover, and take things easy along the way. Take care - Mary (49 at time of diagnosis)

doctorbird
Posts: 4
Joined: Apr 2003

Hang in there. I had my surgery on Feb 6 this year(2003) and was quite frightened. The lack of hormones for me has been literally fire and sweat. With the latest study on hormone replacement I have been hesistant to take anything. I am trying Black Cohosh now for three days but still I am unsure. I have to give it time to kick in but I am still unsure. What is helping though is making sure that I rest well at night but this a paradoxical event since the hot flashes prevent me from getting a full night's rest. From my writing you can see that I am struggling with it. It is good to have a supportive doctor who listens. Hang in there. I have been in tears many times since I have not been able to have a child before and now this. I am 41.

ccs
Posts: 1
Joined: May 2003

doctorbird: I am new to the chat group and am scheduled for surgery May 7th. Could you share with me what to expect following surgery. Thanks ccs.

motahal
Posts: 24
Joined: Mar 2003

I had a complete hysterectomy in March 2002 for adenocarcinoma of the uterus. I was 49 and also pre-menopausal. The main sympton for me was constant bleeding and spotting between my periods. If you still have your uterus, pay special attention to any abnormal bleeding, and if that happens, insist on an endometrial biopsy. You are so right about listening to your own body! I made the mistake of blaming it on menopause, and waited much longer than I should have to see my GYN. I too, was very lucky. It was an early stage and following external and internal pelvic radiation, I am happy to say that I have survived my first year! Take care.

sugarboomer
Posts: 1
Joined: Jan 2003

Can you answer a question for me? I have been having several tests, most recently abdominal ultrasound & lumbar spine MRI (constant paina nd numbness in leg). In January 2002 had laproscopic look see due to cysts and fibroids. Doc said everything looks good, drained cysts, biopsied odd tissue but okay. Uterus is slightly enlarged and bulky. Anyway I had had constant bleeding for the last 20 days, very strange for me. I will stop for several hours, however I start again immediately after my morning workout sessions, very bright red blood. Do I contact my gyn or look for a gyn/onc? I have been feeling terrible for 2 years now and have been investigating for the last 6 months and all docs are trying to tell me its hormonal, I just turned 50 and had been in perfect health previous to this 2 year deal. Recently, in the past 3 weeks I developed a strange lump on the side of my knee, xray said "study normal" I am terrified of a sarcoma, possibly uterine and spreading. Any input is appreciated. you can email me at sugarboomer@aol.com thanks

wookie
Posts: 1
Joined: May 2003

Sugarboomer, I hope I can answer your question. Go to a Gyn/Onc! I had normal everything except bleeding and all the tests in the world didnt catch the cancer until it was to late so stay on top of it! You know your body. God Bless

Deborah510
Posts: 3
Joined: Feb 2003

Hello,

I'm Deborah, I was diagnosed at 39 with Uterine Cancer. This May 4th will be my 6th year anniversary. I experienced both internal and external radiation. I was blessed to have a great GYN and Oncologist that I love till this day. I experienced very heavy bleeding, fortunately I never experienced cramps or pain which my doctors couldn't understand. My doctor did a D&C and a biopsy and a week later called me with the news a, told me I had a year to live. I thank the Lord everyday for my life, and yes it's gotten better. There's always a fear that cancer can appear in another part of my body, but I have to live for today. Every anniversary I buy a ring to celebrate my anniversary, except for my 4th anniversary I bought my home-on my own! So hang in there there's life after cancer. Celebrate each day and stop to smell the roses!

relayronni
Posts: 3
Joined: Apr 2003

I sure wish I had your attitude... I was diagnosed in 2001 with uterine cancer. I was 28. I'm 30 now and been married for 6 years. I think our marriage is over now. We both wanted kids. I'm 30, sterile, really fat (thank you megace) and depressed. I've lost my house, my profession, and my hope. I hate this disease and silently pray it would come back and take me. All I ever wanted to be was a mom. Don't any of you dare say "there is always adoption" that is a lie. I have multiple friends who have lost hundreds of thousands of dollars trying to adopt. I lost every dollar I had and became homeless because of this disease so I'm in no way to adopt. A 14 year old can have a child but I can't. Not being a father is the perfect excuse for my husband to revert back into childhood and refuse to be responsible for anything. Anti-depressants don't work and now that I'm not insured anymore if anything ever came back, I'd never get to find out. Ce la vie. Not everyone has a great outcome to this horrible disease. Some of us just wait until it comes back to devour what little it has left behind.

candygirl
Posts: 2
Joined: May 2003

Dear RelayRonni,

I am SO sorry to hear your tale! I WILL pray for you! Please e-mail me at cjk711@yahoo.com

I must start taking Megace myself soon. I am so sorry you got fat on this! What other side effects did you have? How are you doing with your cancer now?

PLEASE, PLEASE do NOT give up, OK? I CARE A LOT!

Candygirl

cbickrest
Posts: 1
Joined: Jan 2005

I took Megace 8 years ago--gained only 5-lbs. The main thing I remember was that I felt very emotional--cried whenever I was driving???? It effects everyone differently. Listen to your Dr. I had my precancerous condition reversed with Megace--unfortunately since than, I moved to another state and was under another Dr. care that didn't take my situation as seriously as my Dr. in PA. I went off a low dose birth control after talking to my new Dr. and ended up with cancer--hysterectomy and radiation. I knew better than to go off the birth control but I was 39 without children and thought I'd give it one last go!!! I hope that someone reads this and doesn't make the same mistake as me.

brendamobley
Posts: 2
Joined: May 2002

I had endometrial cancer and blood clot problems was homeless for a while since I couldn't work and get treated at the same time. The best help I got at that time came from the social workers at my hospital, which was MD Anderson Cancer Center. They ran interference for me with the staff at the shelter so I could have a safe place to stay and not be expected to do chores that were too physical for me at the time. It was still a close thing with the shelter staff because they don't want to believe anyone. But the phone calls and the letters from the hospital, and the fact that one of their volunteers also worked at the hospital, meant there was someone to "advocate" for me as they say. If you're homeless don't trust the charities to understand what cancer is about. Make sure your social workers who know about your disease advocate for you. The public has the idea that cancer is a death sentence and so they don't want to help. But that's not always true anymore. I got better, now I have a full time job and rent an okay place, and I'm rebuilding what I lost to being homeless. Give yourself lots of time and credit and all the support you can get. And if you have any family members that aren't fighting for your life, get rid of them. I'm serious. Your life is worth it. Cancer taught me two things some women never learn, 1) you have to fight for your own survival, and 2) you don't owe anything to a man who doesn't care about you. Period. I hope this helps. I know I'm pretty intense now, but I did survive and I'm still a free person! I hope things work out for you. -- Brenda

groundeffect
Posts: 651
Joined: Mar 2003

I usually go into the ovarian cancer board because it was my "worse" cancer, but thought I'd check into the uterine board today.

I hope you're feeling better, although it's going to take some time. I was diagnosed with Stage 1B epithelial cancer in Aug. 2002, after being admitted to the hospital with DVT and a pulmonary embolism (which I now know can be indicators of lower body cancer), where my OB/GYN took the initiative to do a uterine biopsy, which was not advised by my hematologist because of the blood thinners I was being given. It came back positive the next day, and my hysterectomy was arranged before I left that hospital. When I had the surgery, it was found that I had ovarian cancer (Stage 1C), so I consider myself a very lucky person to have had it uncovered. My last round of chemo was in January. I was premenopausal, also, but have not had any really bad symptoms to speak of. My family also had no history, but I do have to wonder what my grandmother died of in 1929!

You are to be congratulated for your persistence in having the D&C done, and your doc, too. Fran Drescher's book "Cancer Schmancer" talks about how she went to 7 doctors before getting her diagnosis of uterine cancer! She has talked to a lot of women who report that they had leg pain (as she did) prior to their diagnosis with uterine cancer.

I had a number of symptoms that were being investigated (heavy bleeding being the most important-I was really anemic) when I went in with the P.E., so that was like the icing on the cake for me.

Oddly, my brother who is 52 was diagnosed with prostate cancer in Nov. 2002. We're both wondering if it was something environmental that caused our cancers, or maybe it does go back to our genes.

If you're having any depression, don't be afraid to ask your doctor for something for it. I've had experience with that, too, and believe me, you can think better and sort things out without feeling bad all of the time.

I'm 49 now, and am feeling better every day.

motahal
Posts: 24
Joined: Mar 2003

Groundeffect, my RAD/ONC asked tons of environmentally related questions when I was diagnosed with stage 1b grade 2 endometrial cancer in Feb 2002. Sure makes you wonder, doesn't it? I have a strong family history of breast cancer, so this was a shock. Now I'm more worried than ever about getting breast cancer! Glad to hear you're doing well, and I hope your brother is too.
p.s. Read Cancer Schmancer, good book!

SJR
Posts: 1
Joined: May 2003

hi, first time to this site. Diagnosed with ESS (endometrial stromal sarcoma-low grade)
April 02. Had TAH, now on Megace. I was premenopausal so it's been tough. I have pelvic exams every 3-4 mos. Had a CAT scan in Dec. 02.
Today I was told at check you look okay. Questioned as to whether I should have chest xray's. Told "We don't do that anymore. By the time it's in your chest, it's all over." This blew me away. Needed to vent, and get someone else's experience. Thanks for being here.

lizzie2
Posts: 2
Joined: Apr 2003

When I was forty-six I had a hysteretomy and cancer was found in one of the fibroid tumors (leiomyoscarcoma)very rare they said. I was cancer free for six years and it returned to my lung. Two years later went to my small intestines. A year later or so it returned to my lung and six months to my lung. Each time surgery was the only hope this time a chemo treatment was found and worked. Now it is wait and watch. It has been 11 years one month since my first diagnosis. I truly understand how you feel.

lchurt
Posts: 2
Joined: May 2003

I am 46, I was diagnosed in December with a rare varient of Endometrial Stromal Sarcoma, mine resembles ovarian sex cord. I had TAH/BSO and am recieving close follow up and 6 month CAT scans.
Leiomyosarcoma, and mixed mullarian tumor are all in the family of ESS. These are all rare uterine cancers and I realize not much information is out there. Please feel free to E-mail me. shurt@sitestar.net.
Lori

jm1j
Posts: 1
Joined: Jan 2004

I have had the same thing -- only just diagnosed in September, '03. Will be checked every 3 mos with CT scans once a year. What chemo worked for you???

homeschoolmom
Posts: 5
Joined: Feb 2004

I had a complete hysterectomy at age 44 due to Leiomyosarcoma attached to the outside of my uterus in Nov 2002. I followed this with six weeks of pelvic radiation. In Nov of 2003, the same symptoms returned and a CT scan revealed a tumor nestled next to my small intestine. I had a second surgery, same incision, in Nov 03 to remove not only that tumor (no resection necessary), but also suspicious spots in the omentum and my appendix (a huge tumor wrapped around it). All tumors were from the original Leiomyosarcoma. I'm about to undergo chemo and have done some research about a clinical trial at New York Presbyterian Hospital with oral chemo for Leiomyosarcoma that I may sign up for after this treatment is completed.

hojo
Posts: 7
Joined: Jan 2002

hi i'm ronnie and a uterine ca survivor..diagnosed with stage 3 12/99 at 47...2 surgery's, radiation, chemo and i am alive to tell the tale..it's bothersome to me that the only diagnoses for uterine ca is d&c..yes you are right that bleeding is NOT a normal sign of memopause ( and what did i know and i'm an RN)be persistant and also be hopeful!!! great book to lift your spirits..Bald in the Land of Big Hair by Joni Rodgers...Keep in touch..it's nice to know i am not alone...:) ronnie

montana
Posts: 2
Joined: Mar 2004

I know your post was well over a year ago. I was diagnosed with lms, stage iii end of Jan. 2004. It had not spread outside the uterus, but was considered very aggressive, large. I am receiving radiation therapy for 5 weeks in another state as I am from a rural area that had not heard of this. I am considered cancer free right now from the surgery - the rt is to prevent recurrence - is there anyone out there that has faced this same situation? Some docs want to do chemo, but others say they do not believe it is necessary - yet everyone hedges as these tumors can come back. I am reluctant to do chemo - if you did or have done chemo when cancer free can you tell me on what protocol? Bless all of you out there for your courage and grace - I am 57 and also a thryoid cancer survivor. I will answer anyone that writes.

aminmi
Posts: 8
Joined: Oct 2003

I am 50 yrs. old and was diagnosed on my 49th birthday with endometrial cancer. I was premenopausal at the time and have spent the last 15 months fighting hot flashes and chills. I get so cold that my body tenses up and shakes and then BOOM I switch to a hot flash, soaking my clothes. A year ago my onc prescribed Effexor for the hot/cold swings, but I couldn't take it because it caused anxiety, agitation and insomnia. I have plenty of those already and don't need any more. Hormones are not recommended for me because of my cancer and I don't want to take them anyway, but it would be nice to be able to do something about this. Right before a hot flash I aften get restless and agitated and sometimes have nausea. I've had, maybe 2 decent nights sleep in 15 months. And that's only decent, not good. Taking Tylenol PM or the like doesn't keep me from waking up, but it does sometimes help me get back to sleep quicker. I am constantly piling on multiple layers of clothing and blankets, only to desperately throw them off when I feel the hot flash coming on. This goes on day and night and gets exhausting and embarassing. Recently I asked my onc again if there was something I could take to help all this and he said not really. Does anyone have any suggestions?

idontthinkso
Posts: 3
Joined: Feb 2004

dear jilld, i am replying to you even though your letter was written last March. How are you doing? I know how scary this all is. I have had the same kind of cancer and also comefrom a family with NO cancer.

Does anyone know? How do you know if you are okay? How do you know if you aren't? Let me know how things are going for you.

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