Just need to vent (Recap of Lost Posts, Topic Created by Donswife48 on Nov 11, 2018)

cmb Member Posts: 886 Member

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.


Nov 11, 2018 - 6:54 pm

I don't post often, but I do read the discussions often, and am sad to see so many new names since my initial diagnosis and treatment almost 3 years ago.  I'm doing fine, even though I am UPSC stage 3, type 3C so I won't complain.  But I just read on my local news that Project Pink'd hosted a dinner for breast cancer survivors, held in a nice hotel, even gave them frozen dinners prepared by the hotel to take home to share with their families.  As a single person, this would have been a nice perk if they only would have said "cancer" instead of "breast cancer".  I don't distinguish anyone with cancer, we're all in the same boat, but it somehow bothers me that breast cancer is the one that garners more research, new treatments, when we are left with the leftover funds, and are still prescribed the same drugs and treatments that were developed in the late 90"s.  So I've said my peice, I am thankful that I still see many of the names on this discussion site who offered me comfort.  I have hope that somewhere in the future, all cancer will be treatable, until then let's continute to live our lives to the fullest.  And Happy Holidays to the next few months.  Hugs Nancy



Nov 11, 2018 - 7:26 pm

Many share your observations

Hi there! As many know having a famous and wealthy individual personally involved in fighting any particular cancer is a strong determinative factor in funding. As is of course, how big the market opportunity is for the pharmaceutical, biotech, or medecal device manufacturers. Same may be said of the individual practitioner who decides to pursue a specialty for treating and caring for people with certain types of cancer. 

Most people don‘t realize that children’s healthcare or geriatric medicine aren’t funded on parity with adult medicine.

On a positive note there are organizations that work on research and funding for rare and unusual diseases.

Most of the medical research done in the USA is funded through the National Institute of Heath ( funded by us as taxpayers). Today the research development companies conduct research in multiple countries because the population from which to secure study participants is larger than just the USA. Also some countries standards for medical research aren’t quite as stringent. 

I agree that cancer is cancer but public awareness and research funding varies greatly by cancer type. 

We are a group of women who know what it truly means to be thankful on a whole new level. 



Nov 11, 2018 - 7:51 pm

The amount spent on

I hear you. The amount spent on gynecological cancers research is far lower than breast and prostate cancers, even after accounting for the number of deaths:




I often think it's amazing that in this day and age, data from all cases can't be recorded and learned from. Of course, I know it's complicated and involves a whole lot of issues. But I still think so very much data is just lost.


I do appreciate the breast cancer research, as my sister is an almost 20 year stage 2 survivor. My father passed away almost 3 years ago from his second cancer. I hate all cancer and read with interest the advances in all types.



Nov 11, 2018 - 8:23 pm

My 12 year old daughter

My 12 year old daughter bought a breast cancer aweness shirt the other day. Ever since my cancer diagnosis 2 and a half years ago shes been in support of cancer. The last two summers i sent her to a camp for kids who have parents with cancer( or had cancer). She loves it. I dont think she realizes how much support there is for breast cancer and how little there is for other cancers. She i think just bought the shirt to support cancer. Im sure if they would have had a uterine cancer shirt at the store she would have bought it. I do wish there was more talk of all cancers. 



Nov 11, 2018 - 8:35 pm

Nancy, so good to hear from

Nancy, so good to hear from you.  I worry when we don't hear from someone that something might be going on, but happy that this is someone off living their life!!!  That is good.

I will say I participate on a panel that has lots of people from different cancers represented.  I mentioned that someone with uterine doesn't get a lot of 'practice' in reviewing of things, and someone else laughed and said "with the breast cancer we get to review 30 different things a month".   Let me say, the silence that followed that comment?  Well, silence can be louder than words sometimes. 

All of us "other" cancers wish that could be us - and cancer is cancer.  It is a horrible disease that robs us of our loved ones, so we can't begrudge the breast cancer folks, we just wish it was us.  It would be wonderful if all the monies could benefit all. 

Maybe someday pigs will fly.  Until then I would encourage you not to be afraid to say UTERUS, OVARIAN, CERVICAL, VULVAR, and FALLOPIAN.  These are our cancers.  

I was at the Race to End Women's Cancer this Nov 4.  It was a cool, sunny day.  It was also bittersweet.  My twin walked with me, and as we made our way around the course, I couldn't help but think of all the women we have lost.  Why can't they find something DAMN IT!  

I was asked at work if I would be willing to help with the breast cancer, pink sale.  The women who asked me is a friend.  She had triple negative breast cancer about a year before I had my UPSC and she was a complete ANGEL in my life.  I had to say, "I'm sorry.  I know my mom died of metastatic breast cancer, but I had an orphan cancer."  Luckily, she is my friend and she  understands.  

I pray for all the warriors.  I pray for a cure everyday.  My two cents this evening.



Nov 11, 2018 - 11:01 pm

That Phrase!

The phrase "orphan cancer" just breaks my heart!  It's so true and it makes me sad.  I think people have such sympathy for breast cancer because it's more outwardly disfiguring, and I get that - but something about losing your "lady parts," even after menopause, is a huge emotional hit too.  I'm thankful for all of you, because at least we're orphans together.



Nov 15, 2018 - 3:42 pm

I’m with you Notime. Even

I’m with you Notime. Even though my best friend had breast cancer, she knows about how upset I get about no awareness studies etc etc about our disease. Last year one of my friends did a Facebook thing about breast cancer in September and I said sorry, but this is gynechological cancer month. Oh, I didn’t know that she said. Anyway I live in the hometown of Susan Komen, home of Race for the Cure. It’s 24 7 breast cancer. I so want to go to the Gynecholical walk in Washington, DC one day and somehow spread more awareness etc in my hometown.



Nov 12, 2018 - 1:36 pm

It's partly a numbers game. 

It's partly a numbers game.  About 1:9 women will develop breast cancer at some point in their lives.  No one even thinks about GYN cancers.  When Gilda Radner had ovarian cancer, there was some publicity about it.  I cannot even think of any celebrity who had uterine cancer, and certainly not UPSC or clear cell.

Pancreatic used to be like this, too, because people died of it so quickly, there was no time for advocacy.  With better treatment, people often have 2-3 yr survival, as opposed to the previous 6-12 month survival.

I don't know what the solution is.  Even my GYN did not recognize that new onset post-menopausal clear discharge could be from uterine cancer.  This disease needs much more publicity.  The incidence is rising.



Nov 12, 2018 - 3:16 pm

Hi zsazsa,

you are so right about the clear discharge as a sign of uterine cancer, even with the endometroid kind.
I am with you!



Nov 12, 2018 - 6:12 pm

I educate

all the women I can re clear to tannish discharge as a symptom. My gyn didn't recognize it either. 



Nov 13, 2018 - 9:41 pm


Mine was pink and more like mucous.  



Nov 12, 2018 - 3:17 pm


to you dear Nancy!



Nov 12, 2018 - 3:18 pm


Hmmm. I think that actress that played The Nanny had uterine cancer and of course Gwen Eiifel. She went really quick, a year after disgnosis and you have to think she got the best of care. I would have loved to know what happened with her. 



Nov 12, 2018 - 4:00 pm

Fran Drescher. I believe she

Fran Drescher. I believe she has done some work re uterine cancer also.  



Nov 12, 2018 - 4:39 pm

Yes she has.

She is very open about it. She was one of the luckier ones ... Stage 1A endometrioid ... but at least she didn't try to hide it! 

I'm wondering if celebrities are embarrassed for some reason about below-the-belt gyno cancers. Kathy Bates didn't talk about her OVCA for years, though apparently, this was at the advice of her press agent. Bad advice, IMO.




Nov 13, 2018 - 2:33 pm

Fran Drescher did not get what I would call the best of care

I don't know about Gwen Iffel, but Fran Drescher (The Nanny) saw eight doctors over a two-year period before she finally got the correct diagnosis of endometrial cancer.  Not exactly what I would call "the best of care."  Fran documented her saga in search of a diagnosis in her book, "Cancer Schmancer."  While she ultimately received appropriate care, many women with aggressive uterine cancer would have likely been dead if they had to wait that long to be properly diagnosed. 



Nov 12, 2018 - 4:45 pm

Camille Grammer had uterine

Camille Grammer had uterine cancer.  Pierce Brosnan lost both his wife and daughter to ovarian cancer.  Robin Quivers (Howard Stern's side kick) had uterine cancer.