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Can't be afraid to talk about cancer "down there"

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2772
Joined: Mar 2013

Ladies, I want to share a story about an interaction I had with a young woman yesterday.  

Weather is supposed to be cold and crappy here in Indianapolis this weekend and I decided to eliminate one stop for Saturday and pop in to the grocery store on Friday on my way home from work.  When I pushed the shopping cart back to my car a young woman had parked behind me and we were "dancing" as to who would go first between the cars - me because I had a cart, or her because she was headed inside.  She let me go because she wanted to tell me she like the magnets on the back of my car.

I have the peach Uterine cancer magnet, teal Ovarian cancer, and teal and white Cervical cancer magnets on back.  She told me she liked them.  She told me her friend had one of them (she couldn't remember which one) and had passed away just about a year ago right before her 26 birthday.  Both our eyes were tearing up as we talked.  I told her we cannot be afraid to talk about cancers "down there".  These really are women cancers and I told her I appreciate, and I really do, when people stop to tell me about someone in their life who has been affected by a gyn cancer.

I know I am talking to a lot of women who 'get it'.  The fact is that even though cancer numbers are dropping, there has been no change for survival to cervical or uterine and we have to be an agent of change.

Take care all you beautiful women!  (and their families who come here to share)

Quilter_1's picture
Quilter_1
Posts: 87
Joined: Mar 2019

Well said.  I go to church with a young woman, age 36, who just recently finished treatment for uterine cancer.  She had a andinocarinoma, had a hysterectomy and radiation, including 3 brachytherapy.  I'm amazed at how little she actually knows about her cancer and treatment.  I know the facility she went to, and, it is a wonderful cancer treatment complex.  We do need to talk about these cancers to raise awareness.

MAbound
Posts: 1063
Joined: Jun 2016

I wish there was more talk about risk factors for uterine cancer before it becomes an issue for someone. The mortality rates could go down if there was more education out there about them. It would enable more to be pro-active protecting themselves if they only knew what's putting them at higher risk. How many have been blindsided by this diagnosis even though they've been faithfully seeing their doctors and getting screened for other cancers? How many of us never heard a whisper about uterine cancer before we were diagnosed with it? Those risk factors are all we have to alert us when we are vulnerable while there is still no screening test, so being aware of them early matters.

MoeKay
Posts: 287
Joined: Feb 2004

Well, I have to say that I've been watching the issues with endometrial cancer statistics unfold since my diagnosis in 1999.  And I wasn't only watching.  For the first several years after my diagnosis and treatment, I wrote more letters to the powers that be, and raised more questions at gynecologic cancer seminars than I can count on my fingers and toes.  I carefully studied the endometrial cancer statistics, and saw not only the incidence rising year after year, but also saw that a larger percentage of women were dying from the disease.  And all the while, I was hearing reports of doctors telling their patients that endometrial cancer was such a "good cancer to have."  Granted, the survival rate is higher than for many other cancers, but the undisputed fact remains that we have been losing ground on endometrial cancer for many years now.

So to be clear, while NoTime states above, "the fact is that even though cancer numbers are dropping, there has been no change for survival to cervical or uterine and we have to be an agent of change."  I think it needs to be made clear that the numbers for endometrial cancer are NOT dropping, and there HAS been a change for survival to uterine cancer, but the change has been in the wrong direction in that the percent of women surviving endometrial cancer now is lower than it was twenty years ago.

I also wanted to mention that I was disappointed when, years back, the Gynecologic Cancer Foundation changed its name to the Foundation for Women's Cancer.  Many women think only of breast cancer when they think of "women's cancer."  Just my opinion, but I don't think the name change did anything positive for gynecologic cancer name recognition.  Perhaps thought should be given to petitioning the FWC to reverse the name change. 

Here's a link to a recent report from the CDC on uterine cancer incidence and mortality:

https://www.cdc.gov/mmwr/volumes/67/wr/mm6748a1.htm

For those of you with interest in this issue, it would be great to hear your thoughts and comments. 

 

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 927
Joined: Feb 2016

I've chosen to support the Assosiation for Cancer Research instead of FWC because of their constant focus on ovarian. Just my opinion. 

Donna Faye's picture
Donna Faye
Posts: 413
Joined: Jan 2017

NTFC brings up a very timely topic. For ladies of my age - born in the 40's and even into the 50's one did not talk about women's issues with their lady parts. I was embarrassed to buy sanitary napkins because even though or because of - wrapped in brown plain paper...such a secret! I knew nothing about sex but thankfully my college roommate's mother suggested a visit to a woman gyn in 1962 before my marriage. Then in 1972 when I was struggling with a good birth control method, my gyn suggested since I had 3 children and did not want another, I should have a hysterectomy. He had been Lureen Wallace's gyn and she died of uterine cancer at 41. He felt many women died from this cancer unnecessarily. My husband refused to allow me to do what the doctor suggested. At that time, doctors would not do it w/o his consent.  But, point is, if you see her death notices they only say cancer - not uterine. That gyn was so upset with the lack of knowledge about uterine cancer that he was waging a fight for knowledge, but no one dared talk about IT! I have been very open about my uterine cancer as I was about breast cancer. Knowledge is power and believe me I tell every woman I meet about getting answers. Thankfully I was still having gyn exams by a gyn at 77 and she got me to the cancer center in a blink. But, I had asked for the exams as the protocol is no need after 65 unless problems! Sorry to get on a soapbox but this is a topic that needs more openness for sure. Thanks NTFC

Truenortherngirl
Posts: 24
Joined: Feb 2020

I consider myself a fairly well informed person in regards to my personal health but yet knew nothing about uterine cancer.  Why?  All it would have taken is a poster in a family practice, a walk in clinic, hell even a bus stop!  Certainly, there is money being raised for gynecological cancer research so why can't a modest amount be put aside for public awareness?  I just saw a bus stop ad yesterday that informed readers that seeing blood in your urine is a health concern.  All of us have conversations with friends and family and even strangers but to reach a bigger audience there needs to be public awareness campaigns.  

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

All of these comments are spot on!! There is a commercial I have seen and some symptoms are mentioned with a woman in a doctors office and it goes on to say it could be endometriosis? Ahhh I want to scream it could be uterine cancer!!!

Forherself's picture
Forherself
Posts: 413
Joined: Jan 2019

Uterine cancer is rare.  According to the above link 27 cases per 100,000 WOMEN.  Then 68% of those are endometrioid.  That would be 17 per 100,000 women endometrioid.  And 10 per 100,000 women other uterine cancers.  1 in 9 men will bee dignosed with prostate cancer.  You can see how rare uterine cancer is.  It doesn't seem rare here.  

We do know the risk factors for endometrail cancer.  I am an RN and I don't remember reading about it anywhere, or any doctor telling me I had so many.  My family doctor did tell me she did not want to prescribe Premarin for me.  I did. know that it was risk factor, but it seemed far off to me.  I did follow her advice and it may have saved my life.  But still, all the other risk factors were never mentioned.  I was never pregnant, Iam overweight, I started my periods early and had late menopause.  I had endometriosis.  I do think that providers could target women with risk factors and bring it up.  My provider did send me for an US with the very first incidence of post menopausal bleeding, thank goodness.  I really question why so many seem to say oh it's ok.  Probably just fibroids.  It is true most of the time, but that attitude means late diagnosis for many women.  Some providers think it means extra worry for their patients.  But the early diagnosis might save someones life.  I have felt this before reading stories here.  I agree some public education about it would be a great idea.  

Something elseI would like to bring up here.  My oncologist asked me if anyone in my family had breast or uterine cancer.  I have a paternal cousin who had breast cancer.  I thought that was all.  But when I mentioned my cancer diagnosis to her, she said "Oh Mom had that".  So this very rare cacner has hit twice in my family and I never knew it.  It would be nice to have a public education about sharing cancer diagnosis within families.  A lot of times people keep it to themselves.   Tell yoru family.  

As far as the incidence of bowel cancer going down.  Colonoscopies are PREVENTING cancer now.  BUT we used to ask patients if they had a family history of bowel cancer.  In my husbands family both parents had bowel cancer.  All the kids have had adenomatous polyps removed.  None of them have deveolped cancer.  So now when they ask our kids generation if they have a family history of bowel cancer, they will say no, and won't receive early screening.  They need to now change the question to do you have a family history of adenomatous polyps.  Colonoscopies have prevented a lot of heartache.  Too bad we have nothing like that for uterii.

LisaPizza's picture
LisaPizza
Posts: 321
Joined: Feb 2018

I just want to mention that 27 per 100,000 is per one year only. The CDC statistics (2016) show 56,808 new cases of uterine csncer per year - by comparison, there were 67,441 new colorectal cancer cases among women (33.2/100,000 women), so uterine was less, but not all that much less. It's certainly a lot less common than breast and lung cancer, but I don't think it's very rare. It's more common in women than thyroid cancer, melonoma, non Hodgkin's lymphoma, pancreas, kidney, or ovarian cancer. It's the 4th most common cancer in women.

MoeKay
Posts: 287
Joined: Feb 2004

Forherself, we may disagree because we have different definitions of "rare," but I would not characterize uterine cancer as rare.  I would call cervical cancer rare, in that 13,800 cases are expected to be diagnosed in 2020.  See: https://www.cancer.org/cancer/cervical-cancer/about/key-statistics.html

Contrast that with uterine cancer, where 65,620 are expected to be diagnosed this year.  See: https://www.cancer.org/cancer/endometrial-cancer/about/key-statistics.html

It's important to note that 12,590 women are expected to die from uterine cancer this year, which is almost as many as all the cases of cervical cancer that will be diagnosed in 2020  (13,800). 

Also, this year it is estimated that 21,750 women will be diagnosed with ovarian cancer.  See: https://www.cancer.org/cancer/ovarian-cancer/about/key-statistics.html.  If my math is correct, that means that more than three times as many women will be diagnosed with uterine cancer this year as will be diagnosed with ovarian cancer.  So I would probably consider ovarian cancer relatively rare. 

MAbound
Posts: 1063
Joined: Jun 2016

We always say to not to get caught up in statistics because they are generalities that don't really apply to individuals. What's more important here is that there are enough women diagnosed with uterine cancer to justify women getting educated about it before it's diagnosed and to direct more research dollars towards developing a screening test and improving survival. The increasing incidences and mortality should be a wakeup call that women need to have this on their radar as early as they are being taught about cervical and breast cancer, i.e. in their high school health classes and during their health check-ups. We are taught to be vigilant about breast cancer: how many fewer cases of uterine cancer would there be if we and our doctors were equally vigilant for it over the course of our lives? It's too late to first hear about it when we are diagnosed.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2772
Joined: Mar 2013

I love you ladies!  Such wonderful discussion and so many wonderful things brought forward.  

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