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Uterine Cancer Uterine Cancer

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  #1  
Unread 09-11-2008, 07:24 PM
Uterine Cancer

Hello ladies I'm 35 years old I was just diagnosed with uterine cancer stage 1 gade C/III had a total hysterectomy removing both ovaries, fallopian tubes and 3 lymphnodes on August 13,2008. My case was alittle strange to me. I had two biopsies, and a D&C all pathology reports came back atypical(abnormal) cells highly suggestive cancer. Doc told me he cannot tell me yes you have cancer or no you don't have cancer but he recommended that I have the surgery because the cells were so abnormal. I had the surgery and was told uterine cancer agressive type stage 1 grade C. After having all these test for the last four months before deciding to do surgery; I wonder if done sooner would it not have spread so deep into the muscle of my uterus. Good news it was only confined to uterus but it invaded 2/3 of the muscle. Here's the crazy part my gyno surgical oncologist told me he was not going to recommend any treatment for me or any other test to see if it has spread to other parts of the body and for me to decide what type of treatment I want to have. I have never heard of such a thing. He was real negative about radiation treatment and he made me feel really bad and confused. Has anyone had this form of stage and grade and have you done radiation treatments? Did you find it affective? and how long ago did you have this done? I'm home researching information online to help me make the best decision and I will be praying to my heavenly father for guidance.
Thank You Sisters
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  #2  
Unread 09-11-2008, 09:52 PM
Uterine Cancer

I'm sorry to hear about your diagnosis. I also have uterine cancer - I had my hysterectomy the day after you did. I've been doing a lot of research since then - it can be hard to find information about it, compared to some other types of cancer. I had fibroids for years before my diagnosis, and I think the symptoms of the fibroids kept the doctors from considering cancer.

My cancer turned out to be more advanced than yours - although it had not spread into the lymph nodes, they found cancer cells in my ovary - so I will be getting both radiation and chemotherapy. I'm starting radiation next week. For stage one, it's more unclear - a lot of doctors don't recommend anything beyond surgery for stage one, but others recommend radiation.

I had a long discussion with my radiation oncologist last week. If you want a second opinion, you might try to get an appointment with a radiation oncologist - if your hospital has a cancer center, they probably have one on staff. I thought he was a lot more knowlegable about the pros and cons of radiation and side effects, compared to my regular oncologist. He was somewhat pro radiation, of course, but he laid out various options for me.

This is what he told me. Most women who get uterine cancer are past menopause. The disease hasn't been studied that much in younger women. So, the doctors don't really know if it acts differently in younger women, compared to older women. (I'm 38.) Because of that, he recommends radiation to his younger patients, even in later stage 1, because the disease seems to be more aggressive in younger patients, and we have more years in which it might recur. And also, he said that for most young and healthy patients, radiation does not cause that many side effects. Not every doctor would agree with him, but I think I would have had radiation even if my cancer had been at an earlier stage.

I'm having external radiation, because my cancer spread up into the ovary, rather than down into the cervix (which is more typical). Most women get brachiotherapy (in the vagina) instead. I guess I will find out if I have any side effects once I start the treatment.

This is one article I came across that compared radiation in earlier stage patients:

http://www.cochrane.org/reviews/en/ab003916.html

I hope this helps - it's very hard to figure out what's best to do.

Karen
  #3  
Unread 09-11-2008, 10:18 PM
Uterine Cancer

I had the same stage and grade (1C) and I was diagnosed at a young age too, 29. My gyn. oncologist recommended that I meet with a rad. oncologist and she recommended brachiotherapy. I had six treatments and really had no problems with the procedure. I had the brachiotherapy last August.
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  #4  
Unread 09-12-2008, 01:45 AM
Uterine Cancer

You might want to check the National Comprehensive Cancer Center guidelines at www.nccn.org. The guidelines recommend pelvic radiation treatment and/or vaginal brachytherapy for Stage 1C, grade 3, endometrial cancer (of the endometrioid type, not serous or clear cell) if complete surgical staging has been done. That information is found on page 10 of the Guidelines for Uterine Neoplasms.

The guidelines (43 pages) have a lot of good information, but it takes a bit of time to master the flow charts and the information. Page 6, 7, and 10 of the flow chart are most relevant to your stage and grade.

To get to the information on endometrial cancer at www.nccn.org, on the homepage, click "NCCN Clinical Practice Guidelines in Oncology." Then scroll down and click on "Uterine Neoplasms." You will have to register to get into the Practic Guidelines, but once you do, then you just have to use your e-mail address to log in each time you want to read them.

You mentioned that the doctor removed some lymph nodes. Did he also do a pelvic wash?

I think that you should be getting a second opinion. from another gyn/onc.
  #5  
Unread 09-12-2008, 06:58 AM
Uterine Cancer

Hi Corine,

I'm sorry to hear about your recent diagnosis--no one ever wants to hear cancer. But I welcome you to this of women who've heard it too. We'll listen and offer support.

I agree that it would be helpful to get a second opinion from a gyn/onc, plus obtain your own copy of the pathology report. As others have indicated, cancer treatment options vary and depend on your specific diagnosis of stage (spread) and grade (aggressiveness). And true, there are some gray areas--mine was considered an intermediate risk and so I pursued brachytherapy (3 doses), with no side effects.

Many, many of us have successfully undergone treatments. Others will come along to share their experiences. Let us know how it goes.
  #6  
Unread 09-12-2008, 03:58 PM
Uterine Cancer

Thank you ladies! I've gotten some really good advice and will take heed to all. I'm glad I've found this site. It helps to chat with other people who can understand what your going through .
  #7  
Unread 09-12-2008, 04:13 PM
Uterine Cancer

Hi Corine,
to CC where you'll get loads of support from those who've been there. I strongly agree that you should consult with other specialist - gyn oncs and/or oncologists re what type of follow-up treatment(s) might be best given your particular case.
Pls let us know how things are going.
s
  #8  
Unread 09-13-2008, 12:49 AM
Uterine Cancer

Hi Corine:

Sorry that you've had to join our "group", but it's a wonderful place to be.

Unfortunately, there are "grey" areas where doctors don't always agree on treatments. As bronzehorse suggested, the NCCN has the latest figures on treatments according to stage and they update the info each year.

I would strongly suggest getting a second opinion on your issue of treatments. And obtain copies of all of your path reports and surgical reports.

Keep seeking information and opinions from other specialists until you are satisfied and comfortable with your decisions. Another unfortunate task that we all face is that we must be our own health advocates in this fight.

I too had very aggressive uterine cancer that invaded close to 80% of my muscle wall and had jumped into a lymph node. And it was only 5 months from my first symptom until my surgery.

Also, I had both external rads and brachytherapy (internal rads). Most women are fortunate in that they don't suffer side effects for very long after radiation treatment stops. I wasn't that lucky. It's been 16 months (next week) since I finished treatments and I'm still dealing with side effects. At this point, the docs are starting to tell me it's permanent. But, I've learned to live with them. Just had to make some adjustments.

Hugs and prayers.
  #9  
Unread 09-29-2008, 11:42 PM
Uterine Cancer

Hello Ladies,
It seems like everything is moving so slow. I finally get to meet my radiologist October 2nd. Very anxious to hear what he is going to tell me. Alittle weary about the side affects that I may experience.
  #10  
Unread 09-30-2008, 11:44 AM
Uterine Cancer

Corine, it's so good that you have found this site. There is such a wealth of information available to you. I want to tell you my experience. I was diagnosed with endometrial cancer grade 1b1 at he MD Anderson clinic in Madrid. They have a very good reputation for cancer treatment so I do have confidence in their recommendations. Because the cancer had spread into the endocervix, my gyn/onc suggested that I should have 25 days of external pelvic radiation during which time I should have 4 chemo treatments of mild dose cysplatin just to assist the radiation to work more effectively. He then wanted me to have three high dose brachytherapy treatments when the previous treatments were finished. His reasons were that despite his very best efforts to detect any spread in lymph nodes, cavity wash etc, it is impossible to detect stray micro cancer cells that could eventually settle and grow into tumors. He said that the program of radiation/chemo/brachytherapy would take care of anythng that was left and act as a form of insurance against any recurrance.

I did take his advice and I am very glad that I did but I am suffering some problems with bowels following radiotherapy, constipation mostly and some soreness even 10 months afterwards. However, not everyone has these problems.

If I was you, I would at least opt for some form of radiotherapy particularly as your cancer is grade 3. You want the comfort of knowing that you have kicked its butt (excuse me ladies).

Your radiologist will discuss all of these treatments with you. Good luck and let us know how you get on and what decisions you make.
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