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Mom doesn't need to hear all the questions

obos
Posts: 4
Joined: Jun 2006

Hello, my mother was recently diagnosed with IC uterine cancer. She is 62 and in excellent health (competes in triathlons, rides horses) and has a very full and happy life. She had a complete hysterectomy a few weeks ago, which showed no spread of the cancer to nodes. The cells are apparently grade 2 with some indications of grade 3, so they are doing a 5x5 radiation course just to be safe. They say without radiation, risk of recurrence is 26%, and that goes down to 6% after radiation. This is relatively comforting, though my mom has been pretty nervous anyway. I have questions, but am trying to avoid going to her with them, since she needs to focus on healing and thinking positively.

So, I've come here. You seem like a very helpful and supportive community. The questions I have are mostly related to the studies I've seen -- which have a wide range of numbers related to her type of cancer -- and also the meaning of recurrence.

As to the first, when a doctor says 6% chance of recurrence, to me that says at least a 94% survival chance. But some of these studies dealing with IC-grade 3 uterine cancer have much lower survival rates, one as low as 66% after 5 years and 51% after 10. I don't understand the discrepancy. I know probably many of you aren't doctors, but have any of you had similar confusion over statistics like this? I know the statistics can't predict any individual situation, but I would feel more at ease if I could reconcile them somehow with what my mom's oncologist told her (he's supposedly one of the best in the country).

Second, as for recurrence, all my mother will say is "this would not be good." I understand recurrence in that area (they're not concerned about metastases, they said) may be harder to detect and harder to treat, but does this just equal hopelessness? Can they treat local recurrences successfully? I'm confused about this too, and I don't want to unload anxiety and tough questions on my mom as she recovers and looks positively toward the future.

Thank you all for your help and your support.

groundeffect
Posts: 651
Joined: Mar 2003

Hi obos, Although I don't fit the typical profile of a uterine cancer patient because I was found to have ovarian cancer when my hysterectomy was done (my greatest two-fer-one deal!), I'd like to try to give you a little to think about, and perhaps ease your mind. My uterine cancer was 1B, and the ovarian was 1c; I had chemotherapy largely because of the ovarian. I'm not sure if radiation would have been recommended for the uterine if that's all I had. My diagnosis was 4 years ago, and there's no sign of any problems yet.

There are many factors that would need to be considered to get the real picture of your mom's situation, I think. The fact that she is healthy and active is a very good thing, and I'm sure her doctors are enthusiastic about it, also.

Other factors, such as age and lifestyle (drinking, smoking, etc.) can affect outcomes, also.

It's my assumption that every case of cancer is going to be unique in some way, and that we hope that there is going to be a cure with whatever treatments are recommended. I know there are so many women (and men) who find out with such bad prognosis, that I've felt extremely fortunate to come away the way I have.

Having a cancer diagnosis is pretty nerve-wracking, and I strongly suggest your mom consider talking to a therapist if she is having problems with sleeping or relaxing. I know most of the women in my support group use something to help them sleep-it is important for everyone. I've had a prescription for Zoloft for some time now. It's a low dose, but it helps me look at things with less drama.

I hope another woman who has been treated for 1C uterine will answer you-as you may notice, there isn't a huge amount of activity on this board. I'd like to think it's because so many women have a very good prognosis for the rest of their lives, and are living it!

One more thing-please don't spend time worrying about a recurrnce at this point. I was almost constantly worried for about 2 years after my diagnosis-every little pain anywhere was "cancer coming back", and just thinking about that will wear you out!

MoeKay
Posts: 63
Joined: Feb 2004

Hi, Obos,

I also had surgical stage 1c, grade 2, endometrial cancer. I was diagnosed in April 1999 and had a radical hysterectomy as well as internal and external radiation. I have enjoyed excellent health since completing treatment in August 1999.

Yes, the statistics on endometrial cancer can be quite confusing. For example, my gynecologic oncologist told me after completing treatment that I had a 20% chance of recurrence, my radiation oncologist told me I had a 15% chance of recurrence and my second opinion gynecologic oncologist told me I had about a 10% chance of recurrence.

There are so many variables to be considered in determining survival statistics. One thing I saw was that you said your mother was a grade 2, but you were looking at grade 3 statistics. This could account for some of the difference you are seeing. Also, there are many other risk factors besides stage and grade that go into determining one's prognosis. For example, did your mother have a tumor that arose in the lower uterine segment? I did and that is another risk factor for recurrence. Did your mother have a tumor that had invaded the lymph-vascular space, commonly referred to as LVSI? I did and that is another risk factor for recurrence.

Did your mother have a tumor that had invaded the outer 1/3 of her myometrium? I did and that's another risk factor for recurrence. Was your mother's tumor larger than 2 cm.? Mine was and that is sometimes considered another risk factor for recurrence. Age is another factor that is considered, and advanced age is sometimes considered a risk factor for recurrence.

Unfortunately, I don't think anyone can really give you hard and fast statistics. Some of the variability you have seen in the numbers may also be due to the size of the studies you have read, whether or not the women had radiation (and/or other adjuvant treatments) or not, and how long ago and where the studies were conducted.

Endometrial cancer can recur locally or at distant sites, with the lung being the most common site of distant recurrence. If your mother's cancer were to recur locally in the pelvis, there would likely be other treatment options such as additional surgery, radiation, chemotherapy or hormonal treatment approaches, that would be considered.

The fact that your mother is relatively young and in excellent health are both factors that will work in her favor in making a full and speedy recovery.

Since my diagnosis, I have been doing a lot of advocacy on endometrial cancer because it gets so little media attention. If you're interested here's a link to a story about my endometrial cancer journey that appeared in a local newspaper right before the 5th anniversary of my diagnosis two years ago:

http://www.saintpetersuh.com/In_The_News/Featured_Stories/featuredstories45/body_feature45.htm

You may have to copy the link and paste it into your browser.

There is also a very active gynecologic cancer board that you might want to look into at www.hystersisters.com. You would need to first go to "Message Boards," and then to "Cancer Concerns."

Best of luck to you and your mother as she completes her treatment. It sounds like she has a wonderful medical team and a fantastic daughter.

Best regards,

MoeKay

tlva
Posts: 56
Joined: Nov 2005

I hope your mom is doing well and I know she's blessed to have you at her side. I was diagnosed 5/6/05 with Grade 1 Stage 2B endometrial cancer. I was 46 at the time. I had a complete hysterectomy, 25 external radiation treatments and 3 internal treatments. All my choice. My pathology showed only 2 lesions 0.4 cm at greatest dimension and extremely superficial stromal (body of the cervix) invasion. That is the only thing that made me a 2B.

My doctors prefer not to discuss survival statistics because they are outdated, taken from a very large group of women who were treated at least 10 or more years ago; or else they couldn't predict survivorship; and EVERY woman is different. They have however told me to put this behind me and get on with my life.

Most information that I have read is very positive. The Women's Cancer Network post reads that "when detected early before spread to other organs, endometrial cancer is survived by 96% of women". That is the site my gyn-onc sent me to. Be very careful with your resources. There is a lot of junk out there.

You can also go to M.D. Anderson's site and search under treatment protocols and see if your mom is in line with their advice. Mine was exactly what I would have received at M.D. Anderson. And what she says about a recurrence not being good, is that there are no effective chemotherapies for this cancer. But it is given in cases of spread outside the uterus to try to control the disease.

But your moms stage is very early. One and two are...three and four are not. Ask her doctors questions. You can also requset information from the National Cancer Institute and they have a hotline staffed 24/7 with experts to answer your questions. You should also ask her doctor for the National Cancer Comprehensive Network information, that shows exactly what is recommended for her based on age, stage, grade, health and other factors.

I have terrific doctors who have been so up front with me. All you have to do is ask....and ask...and ask. Knowledge is power! Be an advocate for your mother. God bless you both.

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