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Endometrial Cancer Endometrial Cancer

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  #1  
Unread 03-28-2004, 09:57 AM
Endometrial Cancer

New member to this web site.

Hi all!!
This has really been an unusual last 3 weeks. My story is as follows:

I am a 49 year old with no cancer in my family history at all. Married for 23 years with 3 daughters. In the beginning of March I went to the Dr for my usual yearly checkup. She asked if I had any questions or concerns and I told her that I had done all the hot flashes and night sweats and other happy menopause things but for awhile now there has been this discharge with blood that had been going on for awhile now. I wasn't sure how long but maybe close to a year but it had just started being really troublesum. Very concerned she ordered a ultra sound which showed the thickening of the lining of the uterus, a thickness of 14 and she said that normal was around 4. She then ordered the biopsy of the lining, and now we know the rest of the story... Stage 1 cancer dignosed on 3/12. I cried...couldn't tell my family for so long (don't know why it was so hard to tell them)...kept thinking this kind of thing doesn't happen to people like me...prayed for strengh...accepted this and now need to have surgery. On March 25th I went to see the Dr that is going to do the surgery and of course forgot to ask all the questions I had intended on asking but the surgery is now schedualed for March 31st. They will be doing a complete abdominal hysterectomy which I knew but won't really know what this means to me until after its over. Now the biggest worry is still there...will they find more cancer... what stage is this really and will I need cemo? The answers to these questions will not be answered till around the 9th of April. I have a good support system but no one in my family has ever had to deal with this so I really have no one that can answer some lingering questions...

1. How can I expect to feel-post-op, within a week etc?
2. Will I really go through all the menopause things (ie-hot flashes, night sweats, mood swings, etc) after this?
3. I am already overweight does this mean even more weight gain?
4. What does removal of the cervix and everything mean to my sex life? Not that after 20+ yeras of marrage I have much of one ha ha.
5. Should I take stuff to the hospital? What?

I'm sure I will think of more but some insight from anyone would be great.
Sorry this is so long but...well you know I haven't really talked about this to anyone so it felt good to do this.
Thanks in advance to anyone out there that replys.
God bless you all!!
Opalellen
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  #2  
Unread 03-28-2004, 10:52 AM
Hi Opalellen:

I had my surgery for Endo cancer on 3/7/2003. Complete hysterectomy - it's called TAH/BSO. After the surgery, my oncon. gyn. (is your surgeon one? if not, make sure one can be in the OR) said he was sure they got it all. However, when my pathology report came back 4 out of 30 lymph nodes had microscopic traces of cancer, so I had to undergo radiation and chemo. It sounds more scary than it is. I had very similar symptoms as yours.
You do get your sex life back. I didn't gain any weight, actually lost 25 lbs before surgery and after, and have kept that off. I have had symptoms of menopause, but nothing terrible.
I am sure other women will be along to post answers for you.

rest and relax after the surgery. It is not terrible. Listen to your doctors' and let your family wait on you.

You can email me if you want. We are all here for you.
  #3  
Unread 03-28-2004, 11:11 AM
Endometrial Cancer

Hi Opalellen,

In Feb 2000 I had a TAHBSO for stage IB endometrial cancer, and have been fine ever since, with no recurrence and no treatments required, either. I was 48 at the time. Hadn't yet gone through menopause, in fact the menopause hormone was normal or low, but I started some irregular bleeding and the DR wouldn't let it rest until I went through both an ultrasound and a D&C. The ultrasound should a slight endo thickening, and the D&C showed probable cancer.

Before surgery they did a pelvic-abdom CT scan w/wo contrast, to be sure that there wasn't any cancer lurking anywhere else--and there wasn't. Every year (till next year) I have a CT scan around the same time as the surgery was, just to be sure of no spread or recurrence. But even at the time of the surgery, two gyns and the radiation oncologist both told me that there was only a very minimal chance of recurrence.

A lot depends on the aggressiveness of your cancer, its location, etc. The DRS will be able to tell this from the pathology report.

I can tell you that for me the surgery wasn't bad, and my recuperation was 8 wks, with a gradual move back to normal living. Just be sure to follow directions, don't try to do more than you should or be a hero, and pace yourself. You will need LOTS of rest and relaxation. No heavy lifting probably for quite a while. Just tell yourself that you're a Princess!

My only postop distress was a lot of gas pains, but once they figured out what was bothering me, they gave me a pill for it and things....released! My surgery was Tues morning, and by Thurs morning I was feeling a lot better, and went home Fri morning.

As for weight gain--I did put weight on but it was from overeating a year or so after surgery--and now I'm actually at least 5 lb lower than my hysterectomy weight, and much more fit. I do have a little "flap" that's probably going to be a permanent souvenir of the surgery, but it's a small price to pay for saving my life!

Have had no major menopausal problems--some hot flashes, mainly. But they have tamed down a lot.

Endometrial cancer, like any cancer, is a shock when you first learn that you have it. But if it's caught early, it can have a very good track record for not returning.

Be sure to learn all that you can about it, because people can make some dumb statements that will scare you to death (my personal favorite was someone who said to me "oh once someone has cancer let's face it, it ALWAYS comes back to get them.") That person I'm sure wasn't even thinking about the fact that I'd had a cancer diagnosis. But I was glad to know what I do about endo cancer, because the statement didn't freak me out.

Others I'm sure will be along to answer more questions and tell you of their experiences. We're all different, and every case is unique.

Keep us informed on things....we're here for you!

Blessings.
Marlene
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  #4  
Unread 03-28-2004, 11:11 AM
Thank you

I didn't expect a response so soon. Thanks GUCU. This is great feedback. Yes my dr is a oncon gyn so that is good hu? All of your comments make me feel so much better. How are you now? Anymore cancer and how did the cemo go?
Thanks again and I will keep you posted on my progress.
Opalellen
  #5  
Unread 03-28-2004, 09:04 PM
Endometrial Cancer

Dear Opalellen,
I'm sorry you have cancer. I remember the shock I felt when I first heard the news on Nov. 29, 2002. Before I knew it I was in the hospital (Dec. 13/02). How hard it must be for you and your family! I am glad that you have a gyn. oncologist. You are in good hands.

Pack a pair of slip-on slippers. One lady bought herself a pair of silly "Wylie the Coyote" slippers to help her with the anxiety. Take a cozy robe too. I was really happy I had my warm terrycloth because I was chilly sometimes. Walk as soon as you are able. Walk the halls in the hospital if you can--start with just a short walk and build up very gradually. It will help with gas and bowel issues too.

I'm 52 and my weight is about the same now as it was when I went in for surgery. My sex life is fine--much, much better than I had expected. K-Y jelly helps a lot. I have a different perspective on life than I had before the cancer--I appreciate being alive, and I don't "sweat the small stuff" as much. I eat more fruits and vegetables than I used to, and I get out for a walk every day, rain or shine (we live in B.C. where it seldom snows).

There is information on the "No-HRT" forum about ways to cope with surgical menopause. Everyone is very different, and some women find it quite manageable. For me it hasn't been quite so easy, but this site has given me lots of useful "tools," and thanks to all the help, I'm coping, I'm working, and I'm healthy. My mom had endo. cancer too, 10 years ago, and she is nearly 76--still living in her own home, and still cancer-free, even though her cancer was very aggressive and was further advanced than mine.

Take it very easy when you get home from the hospital. Rest, rest, rest. Be kind to yourself. Don't lift anything more than 5 lbs. Get people to help you. This can't be overemphasized! I would advise you to be careful with lifting even after the 6-8 week convalescence period.

I found the pain of the hyst. was "do-able." Regular tylenol was adequate for me when I got home.

Keep asking questions! I will pray for you, that all will be well, and that you will have peace and healing.

from
Monalees
TAH/BSO for endometrial & endocervical cancer/no radiation or chemo/Dec/02
  #6  
Unread 03-28-2004, 09:11 PM
Endometrial Cancer

Hang in there! My surgery is scheduled for the 31st also. I am just praying mine isn't cancerous. My sister had one this summer and hers was cancerous but it was contained and she didn't have to take chemo or radiation.

The doctor doesn't feel comfortable about mine. He is rushing it, I was told on the 9th and my surgery is the same as yours.

  #7  
Unread 03-29-2004, 02:19 AM
Endometrial Cancer

Hi Opalellen,

Welcome to Hystersisters but sorry for the reason I am 47 and almost 3 months post op TAH/BSO for Stage I Grad II endometrial cancer. Life does change once you learn you have cancer, but knowledge is power, and the more you learn about what is going on in your body, what testings and procedures to expect, this does take the edge off some of the fear. My surgery aside from my wound opening up when the staples came out requiring me to have packings to complete the healing process went fairly well. The only thing that changed from the initial biopsy was that some grade III cells were found, but the majority grade II which did not require me to have any additional therapies. The depth of the invasion which refers to stage was better than expected being less than a mm. If this makes better sense, Grade I cells look and behave the closest to normal cells and so on down the cell chain. I won't go on and on from here because much great surgery pre and post op info is contained on the related boards here, but I will add what I found helpful post op was reading the book Cancer Schmancer by Fran Drescher the actress from the show The Nanny who too was diagnosed with endometrial cancer. Fran can be rather emotional about some of the things that don't concern us non Hollywood Sisters, but she does provide a good reference to what to expect in the year to come. Take care of yourself, and all our prayers are with you
  #8  
Unread 03-29-2004, 05:55 AM
Endometrial Cancer

Opalellen: Wow, sounds a lot like me! I went through the menopause thing and thought it wasn't bad. Then I found that my skin was getting nice and soft and I had various other signs that I was perhaps producing more estrogen than I had in the past. I, too, had a discharge but no bleeding and it was becoming troublesome. Dr sent me for an ultrasound, which led to a D&C for what was thought to be a polyp. Woke up to the diagnosis of cancer. Two days later saw the onc and surgery 10 days after D&C. That was October last year.

The diagnosis scared the pants off me, but there was one phrase that the gyn used that I hung on to with dear life -- well differentiated. That meant it was not a lot different from the normal cell. And the final surgery showed that it was a very early cancer and I have had no additional treatment except getting very familiar with my Drs with checkups every 3 months. And the followup pap smears which I get at every check up have been normal. Those pap smears are of the vagina wall where this cancer is most likely to recur.

As for the surgery, it's very doable. I should caution you to take your Drs advice on pain killers. My Dr. told me to make sure I took them as stopping would sensitize the nerve endings and it would take a long time for you to be pain free again. So even if you don't feel a lot of pain, continue with those pain killers. I used Percocet but tapered off during the first 2 weeks. However, I continued to use one or two a day for a number of weeks. By 6 weeks after surgery, we went on a car trip of over 1000 miles each way, stopping overnight half way between and with lots of stops. It was tough going out, but a piece of cake on the way back (at 8 weeks).

I took lots of reading material, a nice robe, slippers, to the hospital. I never used any of these because I had an IV and the robe wouldn't fit over the IV. I used two of the hospital gowns, one with the opening in the back and one put on the other way with the opening in the front. At least I could get these on without much trouble because they snapped at the shoulder. And for reading material -- the anesthesia caused such brain fog that I couldn't concentrate to read, even the newspaper. But you might be different. And in the hospital, get up and walk whenever you can -- it helps with the gas.

My Dr insisted that for the first week that I was home I stay in PJs. I thought this was a bit weird at first but he explained that it's really to keep you thinking that you shouldn't do too much and your family to see you as needing rest. It kept me in the house and not doing a whole lot. I would recommend it especially if you have children around who may not think of you as recovering from surgery.

As for the diagnosis of cancer -- it can really throw you. But as many of us here say, it's opened our eyes to what is important in life. My motto has been: Don't sweat the small stuff and after this it's all small stuff.

As for the sex life -- it hasn't changed for me. But I use a Premarin cream to keep the vagina and surrounding tissues supple and without pain. At menopause I found that the "front" side of the vagina and around the urethra became painful. The cream does a great job of relieving that pain and made for a satisfactory sex life. Onc explained that it (the hormone) affects the tissues where it's applied but doesn't get systemic. At the rate I'm using it, one little tube may last me a year (equivalent to only 1 1/2 months of the oral Premarin). I haven't had many hot flashes or other problems after surgery. If you've already gone through menopause as I did, the tumor may have been producing some estrogen and there will be some hot flashes, but most of the menopause symptoms didn't come back.

At 5 months following surgery, I consider that I'm fully back to normal. I gained a few pounds after surgery due to the inactivity and the winter, but now that I'm doing much more outside, I've lost over 7 pounds in about 6 weeks. I'm hoping that it will continue <very big grin>

Take care and let us know how you are doing. And don't let the ole cancerhead get you down. Look at the bright side of things. Fortunately you found this site before surgery. I didn't find it until about 4 weeks after surgery. I've learned a lot in retrospect.

Linda
  #9  
Unread 03-29-2004, 12:27 PM
endo cancer experience

Opalellen,

I went through what you are going through this time last year. I had abnormal bleeding after thinking I'd made it through the menapausal years.(I was 50) My doc checked and I had arrived! This being established, she sent me for the ultra sound, then the uterine biopsy and the dx. of grade 1 endometrial adenocarcinoma was made. Grade 1 indicates that it was an early grade, generally slow growing and in my case very early. The "thickening" in the endo lining was about 14 mm. and up high in the uterus. this was important as the location can sometimes determine a greater likelihood of cervical/vaginal involvement. Only after the surgery will you know what stage you are.

My surgery was scheduled for about 6 weeks later. That was a horribly long time to wait and worry. I had my surgery on thursday and my doctor talked with me in the recovery room and told me she was VERY confident that it was all gone. She sent everything down to the lab, they called back up during the surgery and told her that it was all contained. She did not do any lymph node biopsies for that reason, but looked at everything. She did a vertical incision for that reason also. It wasn't a choice. She said that she would want to look at everything and if it was necessary to do the lymph nodes then the gyn/onc she had on standy by would do that. Thankfully it wasn't necessary. Anyway, the surgery lasted 1 1/2 hrs. If it had required lymph node work, she said it would be more like 3 hrs. +. The first think I did when I woke up was ask what time it was. Knowing it was the short version made me very happy.

Talk to your doctor about pain control and make sure that you have that part covered. I did and it was still a problem. I won't lie.. for me it was a whole lot more painful than I'd prepared for. I have had major surgery in the past (gallbladder) and so, I thought I knew what to expect. This was worse. The gas problems were awful, but about the same as I remembered. There is great info here on what to prepare for before sugery and after so, I won't elaborate. I did not have any significant hot flashes or issues with that since I'd already gone through it. My doctor told me that if I wasn't having any problems before surgery with that I shouldn't expect any differences. I may have had a few flashed but it was hard to say if it was from the pain meds, or menopause. I think it was the pain meds. After surgery it's normal to have some depression. With the anesthetics and pain and frustrations and limitations, expect a little. It's pretty normal.

Plan on help for about a week or so. I live alone and have a dog and my cousin came to stay for 3 weeks. Two weeks would have worked except with the dog situation. He's a big guy and taking him in and out all day would have been impossible. Take it easy and plan on doing as little as possible for a few weeks. It's amazing how many normal activities are on the "not to do" list. Also, how many things weigh over 5 lbs.

You have found the best site for information and I wish you a good surgery and a good recovery and nothing more than a stage 1a. Good luck...
  #10  
Unread 03-29-2004, 02:08 PM
To all who have answered my Post

I love you all!! This site has been the best experiance of all. I feel so much better about this. Now I can go on and get this surgery with a open mind and not so much worry thanks to you all!! The surgery is 3/31 so I will keep you posted as to how it all goes. Again thank you all for your support and for answering all my questions.
Opalellen
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