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Endometrial cancer in the Valley

Double Whammy's picture
Double Whammy
Posts: 2200
Joined: Jun 2010

Since my dx 18 months ago, I've learned of 3 local friends, all my age, with uterine cancer - and they all have UPSC. One was stage 1b, one stage 2a, and the other stage 3 something. The woman with Stage 1 went through chemo and radiation as I was going through chemo and radiation for breast cancer. We supported each other through treatments. It's been 1 year since her treatments ended and she's NED. The Stage 2 woman had both chemo and radiation over 5 years ago. Still NED. The woman with Stage 3 is still undergoing chemotherapy, has her last treatment Thursday.

So here we all are - all the same age (3 of us exactly, the other one just a couple of years younger), and we all had the same symptoms (post menopausal bleeding) and we all sought medical care immediately. My Stage 3 friend does now recognize some other symptoms she had before bleeding, but not like years before.

If I posted this before, forgive me. I'm just so troubled by this. If UPSC is so rare, why the heck do I have 3 friends who have/had it and I have Stage 1a endometroid adenocarcinoma? That doesn't seem so rare to me at all! I don't personally know anyone with endometriod adenocarcinoma. These women are my friends!

Suzanne

Kaleena's picture
Kaleena
Posts: 945
Joined: Nov 2009

Suzanne:

I think the reason more women are being diagnosed is because the doctors are now looking more closely at the complaints that women have and don't just shrugged them off as something else.

When I was first having problems, I went to my PCP. Didn't seem to worry about anything. I pressured and then he decided for me to get a colonoscopy. I eventually got one several months later. All good. Still having problems (i though IBS), so I decided to go to my gyne. He really didn't find anything. I explained some of my symptoms and concerns. So he ordered an internal ultrasound which only showed a tilted uteris and not much. He indicated the one ovary was deep but he was not concerned. Started having severe pain so they gave me pain pills. Between the IBS problems and the severe pain, I knew this was something unusual. So then my gyne ordered a laparascopy. He said that my scarring from endometriosis was so bad that he couldn't move my uteris and suggested a hysterectomy. Didn't believe it was cancer at all. Then had to wait another 6 months while they put me on lupron to help "soften" the scarring for surgery. Where upon my follow-up appointmnet after my hysterectomy I was told that they found cancer.

If it wasn't for my persistance (and this took from January of 2004 until my diagnosis in September of 2005) for them to find this cancer (which was a total surprise to the doctors).

Although sometimes we can get paranoid about stuff (I used to in the past), but when these symptoms came about it was soooo different and I knew it wasn't right.

So back to your original question, I think women are more in tune with their bodies and therefore are better and describing their symptoms.

Also, as ovarian cancer is said to "whisper" so too is uterin cancers. It is disquised by so many similar maladies that some doctors do not think that far.

My best to you and your friends.

Kathy

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

A generation ago (my mother's time and her sisters) women were given hysterectomies for any complaint. I think that took care of any cancer that might grow. I suspect more cancer will grow as our generation ages and we have had fewer hysterectomies. As I look back I would have gladly had a hysterectomy years ago as I don't wish this treatment on anyone. Those hysterectomies look good to me now! I know many Doctors were critisized for giving too many hysterectomies. I think they saved women's lives and we just couldn't see it back then.

Diane

JoAnnDK
Posts: 276
Joined: Jun 2011

I think EXACTLY the same thing that you do about the last generation and hysterectomies. My mother and three of her four sisters had hysterectomies when they were in their 40s. The remaining sister was diagnosed with ovarian cancer in her late 60s and died from it within a year. So, for me, it is not hard to see the correlation which you wrote about above.

I told my gyn that I should have had a hysterectomy years ago since she thought it necessary for me to have repeated endometrial biopsies over a period of years.......and she gave me the typical line about how it is such serious surgery with the chance of complications. My response was how could it be worse than what I am going through. She is no longer my doctor.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

The number of women with uterine cancer is going to go up as our generation ages; it probably has. We think the same. I say, save women from going through what we are going through. Your sister, Diane

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

you know, there is something to be said for prophylactic hysterectomies - like some women get mastectomies with family history or genetic testing.

But we also live in a more toxic and stressful environment than our mothers, don't you think? What is the cause - genetics or environment or lifestyle? Not everyone gets cancer. Do we start cutting out body parts to avoid cancer??? Maybe things will go this way.

jazzy1's picture
jazzy1
Posts: 1375
Joined: Mar 2010

Great insight ladies as hadn't thought about others with this cancer and in a smaller group setting.

Mary Ann, I do agree 100%...we're in a more toxic environment (pesticides, air pollution, BPA with plastics) and then stress...wow that's huge with all our jobs and trying to be "super woman" to everyone. My corp job had me coming and going and I feel that stress, plus not a great diet as I'd thought, added to my demise with cancer. Plus no genetics anywhere in my family with cancer so then what should I think?

I think docs would love to just keep cutting on us and drugging us more and more. It needs to stop somewhere.

txtrisha55's picture
txtrisha55
Posts: 408
Joined: Apr 2011

My Mother had a soft tissue sarcoma on her leg which spread throughout her body. When it was finally diagnosed it was already a stage 4 and had spread. She passed away in 1992 at the age of 68. Drs. told my sister and me that it was not hereditary and was due to environment. We stopped using pesticides then. My sister and I both went through the change then and had both stopped having periods. I had vaginal bleeding in 2004 and my gyn dr did a D&C and found some polyps that were benign. Pap smears every year came back clear, had a Pap in July 2010 and a colonoscopy in Sep 2010 everything was clear. In 7 March 2011, vaginal bleeding started with bad pain, went to Gyn Dr said she would do another D&C with hystoscope. D&C done 25 March, Dr said there were more polyps and they were nasty looking. Sent everything to pathology. 1 April called and let me know that I had MMMT cancer cells and they were setting appointment with a GYNONC Dr at UT Southwestern Cancer Center in Dallas. I had appointment on 4 April surgery 8 April.
Now was this connected to my Mom’s cancer, I do not think so, but if the Gyn Dr. had done a complete hysterectomy in 2004, I would not have gone through this now in 2011.
trish

Double Whammy's picture
Double Whammy
Posts: 2200
Joined: Jun 2010

Before my diagnosis, I had 3 endometrial biopsies. At the last one (the one that showed cancer), I asked the gyn if she would do a prophylactic hysterectomy if everything was ok. She agreed to do it. Turned out I had cancer so the whole thing was moot. Just wanted to give this as an example that it IS possible to have a prophylactic hysterectomy, just like a prophylactic mastectomy. Sometimes.

Suzanne

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

It is my understanding that all hospitals have a "tissue committee". If surgeons remove organs that do not demonstrate any major pathological issues and so not have good documentation on WHY they removed the organ, they are reprimanded...and after too many "slaps on the wrist" they are sanctioned and/or removed from staff.

Might this be the reason for the decreased number of hysterectomies? I am thinking I would have gladly surrendered my uterus vs. dealing with cancer, radiation and chemo.

Am thinking this might have implications for the pockets of hospitals and physicians?

Hmmmm...more to think about!

Karen

sleem
Posts: 92
Joined: Feb 2010

I had requested a hysterectomy to rid me of the painful intercourse I began to have (now I know it to be a symptom in post-menopause with or without bleeding of possible cancer). I also requested an ultrasound to check things out & if no problem, I wanted to have my uterus out. This former doctor missed a 17 mm stripe thickness which signals cancer is probably already there. 6 months later, I had few drops of blood after intercourse & called dr. back....she never mentioned my ultrasound results...or blood as symptoms to possible problems.. . After memopause, I never had any bleeding again after one month I just stopped. So these few drops were troublesome to me. After my own research, I saw that all these symptoms were serious indicators that I might have cancer...after this doctor did a biopsy, she still didn't tell me the entire truth...I was already getting a second opinion... more tests at another place...they determined that I probably had cancer before my surgery...and after my surgery told me that I saved my own life...coming to them.
I have great care now and thank all of you on this board for helping me in this journey.... and also wish we could find something that would help our fellow sisters who are not where we are now...
Many women still do not know about symptoms for post-menopausal risks of cancer nor told by their physicians. It seems some of us have had a lack of knowledge by our 1st physicians to educate us and inform us at certain ages, etc. about what are the warning signs for uterine, fallopian, & ovarian cancer for post menopausal women. I wish we could change that somehow…

california_artist
Posts: 849
Joined: Jan 2009

Re: educating us. and your last sentence I wish we could change that somehow. Maybe you/we can.

On this website I saw a notice and a place to click for anyone to ask Michelle Obama and Dr. Jill Biden question for a thing on the net on Nov 7.

This is the url

QUESTION FOR MICHELLE OBAMA/Dr. Jill Biden

http://news.yahoo.com/judge-approves-settlement-black-farmers-042842779.html?nc

Kaleena's picture
Kaleena
Posts: 945
Joined: Nov 2009

Did anyone see the news last night about how the simple pill aspirin can be a cancer preventor? Maybe the rise in cancer is because they scarred everyone from taking too much aspirin? Yes, there are side effects from aspirin if taken too much (internal bleeding). But now there is research to say that besides preventing heart attacks it may also keep cancer at bay.

Lois B.
Posts: 10
Joined: Sep 2011

Years ago a friend who had had breast cancer with no recurrence and only treated with Tamoxifen had a prophylactic hysterectomy. At that time, I thought to myself, she is
going too far.

But as I look back, she was the wise one - since 15 years after my breast cancer, what did I get? You guessed it - UPSC.

Lois

california_artist
Posts: 849
Joined: Jan 2009

what do you mean your demise with cancer? you are not even mostly dead. And you silly pickle, you are not going to die.

It's early, did I misread that?

Love ya,

Claudia

jazzy1's picture
jazzy1
Posts: 1375
Joined: Mar 2010

Okay I used the wrong word...darn chemo brain...LOL Yes mam I'm still walking and breathing therefore, not dead....at last check.

Happy Friday....GO CARDINALS (World Series Champs)~~~
Jan

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I too took tamoxifen and I wish someone would have let me decide if I wanted to take the increased risk of cancer of the uterus. It should be my decision. Not the Doctors and not the insurance company. I would have done it.

Diane

RoseyR
Posts: 462
Joined: Feb 2011

Diane,

Am I understanding you correctly: taking tamoxifen is what caused your endometrial cancer?

Rosey

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I'm another endometrial cancer after years on Tamoxifen for breast cancer - my med onc insisted there was absolutely no relationship between the two (I have UPSC) and my current gyn onc insists that just having had breast cancer is a risk factor for UPSC. Of course in my opinion it was the tamoxifen. However I still think a prophylactic hysterectomy is a bit extreme in general. Should we all have all hormonally sensitive 'parts' removed once we are 'done' with there useful life. If all women had mastectomies there'd be no breast cancer. But yikes, where does one draw the line? With no risk factors, I was not likely to go for a prophylactic mastectomy in my late thirties (I had just turned 41 when I found the 'lump.' I experienced profuse vaginal bleeding but no cancer was found in the subsequent D&C, two years before my UPSC Stage IVB diagnosis. If I had had the suggested hysterectomy after all symptoms had resolved, no cancer may have been found but the cells were probably already out and about in the pelvic cavity. No cancer was found in the uterus at staging surgery. The cancer would have been so much harder to diagnose post-hysterectomy, so I don't think that would have been a solution for me. Hard to imagine how different my life would have been without cancer.
Annie

RoseyR
Posts: 462
Joined: Feb 2011

Diane,

Am I understanding you correctly: taking tamoxifen is what caused your endometrial cancer?

Rosey

california_artist
Posts: 849
Joined: Jan 2009

DOUBLE POST

california_artist
Posts: 849
Joined: Jan 2009

This is from the National Cancer Institute Fact Sheet at this url

http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen

Key Points
· Tamoxifen (Nolvadex®) is a drug that interferes with the activity of estrogen, a female hormone. Tamoxifen has been used for more than 30 years to treat breast cancer in women and men (see Question 1).
· Tamoxifen has been used for almost 10 years to reduce the risk of breast cancer in women who are at increased risk of developing breast cancer (see Question 1).
· The known, serious side effects of tamoxifen are blood clots, strokes,

uterine cancer,

and cataracts. Other side effects include menopause-like symptoms such as hot flashes, vaginal dryness, joint pain, and leg cramps (see Questions 4-8).
· The benefits of tamoxifen as a treatment for breast cancer are firmly established and far outweigh the potential risks (see Question 11).
· The results of the Breast Cancer Prevention Trial (BCPT) showed a reduction in diagnoses of invasive breast cancer among women who took tamoxifen for 5 years (see Question 12).
· The results of the Study of Tamoxifen and Raloxifene (STAR) clinical trial showed that tamoxifen and another drug, raloxifene, are equally effective in reducing invasive breast cancer risk in postmenopausal women who are at increased risk of the disease (see Question 14).

6.Does tamoxifen cause cancers of the uterus?
Tamoxifen increases the risk of two types of cancer that can develop in the uterus: endometrial cancer, which arises in the lining of the uterus, and uterine sarcoma, which arises in the muscular wall of the uterus. Like all cancers, endometrial cancer and uterine sarcoma are potentially life-threatening. Women who have had a hysterectomy (surgery to remove the uterus) and are taking tamoxifen are not at increased risk for these cancers.

Endometrial Cancer
Studies have found the risk of developing endometrial cancer to be about 2 cases per 1,000 women taking tamoxifen each year compared with 1 case per 1,000 women taking placebo (1, 2). Most of the endometrial cancers that have occurred in women taking tamoxifen have been found in the early stages, and treatment has usually been effective. However, for some breast cancer patients who developed endometrial cancer while taking tamoxifen, the disease was life-threatening.

Uterine Sarcoma
Studies have found the risk of developing uterine sarcoma to be slightly higher in women taking tamoxifen compared with women taking placebo. However, it was less than 1 case per 1,000 women per year in both groups (1, 2). Research to date indicates that uterine sarcoma is more likely to be diagnosed at later stages than endometrial cancer, and may therefore be harder to control and more life-threatening than endometrial cancer.
Abnormal vaginal bleeding and lower abdominal (pelvic) pain are symptoms of cancers of the uterus. Women who are taking tamoxifen should talk with their doctor about having regular pelvic examinations and should be checked promptly if they have any abnormal vaginal bleeding or pelvic pain between scheduled exams.

7.Does tamoxifen cause other types of cancer?
Tamoxifen is not known to cause any types of cancer in humans other than endometrial cancer and uterine sarcoma.

There is a lot more information on the NCI url above

Double Whammy's picture
Double Whammy
Posts: 2200
Joined: Jun 2010

we can definitely conclude that tamoxifen isn't the only factor in developing both endometrial and breast cancers, no matter in what order. I've hung out on some forums this past year, and I've seen endo first, or breast cancer first - with or without tamoxifen. It seems that most women on the CSN breast cancer board who are on tamoxifen also have routine ultrasounds to check the thickness of their uterine lining. A few have had hysterectomies because of the thickening, but no cancer (yet).

Early on when I first saw my medical oncologist (breast cancer), she said was very pleased that my pathology for the endo cancer was early stage, low grade, and she said "and now we don't have to worry about you getting ovarian cancer, too".

It would never have crossed my mind that having one or the other puts you at greater risk for another, let alone adding tamoxifen to the equation.

I'm pretty sure I would have had a prophylactic hysterectomy without a dx of either cancer because I did have thickened uterine lining and had had a total of 3 endometrial biopsies over the past few years. My gyn said it would be appropriate and we were going to schedule it for 6 months down the road. Without those symptoms, tho, I really doubt it would have been done simply because I had breast cancer. I'm also on Arimidex, not tamoxifen.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

I might report your 'findings' to CDC, Center for Disease Control,
Sara

california_artist
Posts: 849
Joined: Jan 2009

How sad for so many to have the same type of cancer in an area. you mention the valley, is it an agricultural valley?

Double Whammy's picture
Double Whammy
Posts: 2200
Joined: Jun 2010

and we all grew up in the era where we ran after and played in the fog generated by the mosquito abatement sprayers if all the other pesticides, herbicides and crop dusting wasn't enough. Good grief!

S

california_artist
Posts: 849
Joined: Jan 2009

I am very sorry to hear that. : > (

You look beautiful, truly.

Claudia

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