World Cancer Day: The Need to Raise Awareness

Tomorrow is the World Cancer Day (http://www.worldcancerday.org/about).  Wear purple to raise awareness about all kind of cancers.  Last year, a dear friend posted on her Facebook wall on February 4th that she was wearing purple on World Cancer Day in my honor.  I did not know it was the World Cancer Day.  Before getting diagnosed with cancer myself, cancer was something I did not want to deal with.  I felt saddened for those who got cancer but it was something I did not want to know about.  You could call that denial.  You could call that a chosen oblivion.  I did not want to learn more about cancer nor did I want to think about it.  A breast cancer survivor friend told me last year, "Welcome to learning about stuff you did not want to learn... but you need to."

When I saw that Facebook post by my friend on the morning of February 4th, I decided to put on a purple shirt.  I still did not know much about cancer, let alone my own cancer.  The lesson I learned from February 4, 2015 is that knowledge is gained through your own pursuits.  Knowledge is not a given.  You are absolutely in charge.  On February 4th, I was frustrated that I still had so many unanswered questions.  And that answers had to be obtained from the medical experts.  I am a die-hard researcher and I like to search for answers on my own.  I was ready to investigate online upon learning my type of cancer: "Invasive well differentiated endometrioid type adenocarcinoma FIGO Grade 1".  Many people advised me not to research online because there were a lot of scary information online.  True.  I avoided Google the first few days and then started.  I came across scary information.  I saw a YouTube video by an extremist organization against hysterectomies that explains that a hysterectomy would take away the woman's ability to feel emotions such as love and tenderness.  Now that I have had the hysterectomy, this seems ridiculous.  Still, I was very vulnerable and swimming through the land of unknown at that time so anything seemed possible.  I read some horror stories about women whose hysterectomies went wrong and their vaginas were defective permanently.  I decided to give up on the Internet.  I did not want to research and come across those horror stories that kept on making me burst into tears and feeling like I would rather let the cancer win.  It was difficult to filter through the search results.  I decided to consult the medical experts.  The first oncologist did not give me much to work with other than the general statement that they knew I had endometrial cancer and that she wanted to put me under the knife to remove everything.  The second oncologist, who I met with on February 4th, did not give me anything.  This experience made me wonder what cancer patients are to do if they are advised to avoid the Internet and do not have oncologists who do not take the time to go into great detail about their type of cancer, prognosis, and treatment options.  It took me 2.5 weeks to swim in my own despair of not knowing anything before I decided to find a different oncologist.  I researched online for the best cancer centers in the country and decided on Memorial Sloan Kettering Cancer Center.  I am forever grateful because my oncologist took the time to explain everything to me, including drawing pictures and sharing the latest research on treatment options for my type of cancer.  Nurses routinely answered all my questions via email.  Social workers offered countless resources.  Sadly, many people do not have that option.  They are usually stuck with the oncologists available to them who do not supply them with enough knowledge to help them make the right choices for their treatment.  Then there's the big, bad Internet which contain some false information.  What are cancer patients to do to arm themselves with the right information?  I am not sure.  My strategy was to keep on shopping for the right oncologist and fortunately, that worked out for me.  I believe that we need to know more about cancer, even if we don't have cancer.  We need to know where to go to for the right kind of information, not the type that are designed to scare people.  How do we begin?  I have started by talking with newly diagnosed cancer patients, telling them I do get it.  And I try my best to give them the information and resources they should know.  I offer to answer any questions they may have.  I am no expert but I put in an effort because I do not want them to breakdown like I did last year, with wrong information.  If you do not feel you have the right information, encourage them to talk with others who may be able to help.  I have told people that I am happy to talk with others.  The bottom line... the more we know, the better we can support those who are dealing with cancer.

September: Endometrial Cancer Awareness Month #4

Ovaries.  I know it’s supposed to be about the endometrium this month but… bear with me.  I am amazed by the number of women who I have met over the past few months who believe ovaries are just good enough for making babies.  When they are done, they are perfectly fine with throwing them out.  I met a woman at a gathering recently who was upset about her friend’s cancer diagnosis and then she was scared.  Her period has been iffy as of late.  She said that she wanted to ask her doctor to take them out because she did not need them anymore.  She had two children already.  I had to stop her right there and told them… those are not just for babies.   Ovaries are so instrumental in maintaining your hormonal balance.  Yes, maybe some days you feel like your hormones are getting out of control but it’s all part of the ride as a woman. 

Ovaries also keep you healthy.  Keeping your ovaries significantly reduces the risk of osteoporosis and heart disease.  Sadly, many doctors do rush into removing ovaries.  And women follow along.  A friend’s friend was about to undergo hysterectomy recently.  She was about to have both of her ovaries removed.  I begged her to tell her friend to fight to keep at least ONE ovary.  One ovary was bad… but the other one can be saved.  I was relieved to learn the good ovary was saved. 

Surgical menopause is a difficult process as well.  Women who experience menopause naturally go through changes gradually.  Imagine the gradual process that spans about one-two years all squeezed into an overnight process.   Some women have to undergo surgical menopause.  Many do not need to undergo that.  Women who have endometrial cancer are often urged to do a full hysterectomy removing their ovaries.  Dr. Jewell has been practicing for almost ten years.  In this time period, she has only seen TWO women who had endometrial cancer who kept their ovaries get ovarian cancer later in their lives.  The odds are very low, making it worthwhile to keep the ovaries.  The benefits of keeping ovaries outweigh the risks for sure.

Ladies, hold on to your golden eggs!

September: Endometrial Cancer Awareness Month Tidbit # 3

Colors Galore

I have been asked if the color peach applies to all gynecologic cancers since pink applies to the 'other' private part of a woman- the breasts.  Nope.

The color peach represents endometrial/ uterine cancers
Teal: ovarian cancer
Teal/white: cervical cancer
Purple: vagina/ vulvar cancers

Lavender: all kinds of cancer

I proudly wear a bracelet daily... lavender or peach.  It represents a part of who I am... a cancer survivor.  I have a peach ribbon on my backpack.  A few people have asked me about the ribbon.  One person said she is so used to seeing pink all the time.  It was good to spread awareness that way.

September: Endometrial Cancer Awareness Month Tidbit #1

I could swear that every month has several different types of awareness.  Before I investigated further, I knew of Endometrial Cancer, Lymphoma, and Deaf for the month of September.  I decided to Google to see what other areas of awareness exist for this month.  Pain, Children’s Eye Health and Safety, Alcohol and Drug Addiction Recovery, Children’s Cancer , Guide Dog, Life Insurance, Honey, and many more. 

Those awareness months are notable.  Awareness needs to be spread year-round.  I have met women who tell me that they learn a lot from my blog and from talking with me.  I will continue to want to educate others.  It should not happen just in one month.  But… in honor of this month, I will be posting some tidbits about endometrial cancer this month.

Endometrial cancer is developed after endometrial hyperplasia develops in the lining of the uterus.  Endometrial hyperplasia basically means the lining of the uterus has become too thick.  Endometrial hyperplasia does not always lead to cancer.  Endometrial hyperplasia develops when there is excess estrogen.  There are four types of endometrial hyperplasia: simple, simple with atypia, complex, and complex with atypia.  I had complex with atypia.  I asked Dr. Jewell to explain complex atypical hyperplasia in layman’s terms.  She said it’s when the lining in the uterus becomes too thick and messy.  I suppose it was what caused uterine polyps to emerge.  Progesterone can be used to treat simple and complex hyperplasia without atypicality… in the form of a pill, shot, intrauterine device, or vaginal cream.  That was why I had hormone therapy at the beginning, which did not work quite well for me for numerous reasons.  Hysterectomy is the best way to treat complex atypical hyperplasia and endometrial cancer. 

According to the American Cancer Society’s website, if the hyperplasia is atypical, there’s an increased risk of it developing into cancer.  Hyperplasia can be treated if detected early.  If not treated, 8% of simple atypical hyperplasia and 29% of complex atypical hyperplasia turn into cancer.  It is clear I had complex atypical hyperplasia for a few years before it became cancer.  It is challenging to detect.  However, one warning sign was that my period was heavier than normal.  My doctors thought it was normal part of becoming older.  My advice to women out there… if your period becomes heavier than normal, go find out why!  If a gynecologist tells you to suck it up and that it’s normal, seek another opinion.  You need to insist on getting a transvaginal / pelvic ultrasound. 

The Peach Campaign: The Need to Raise Awareness about Uterine Cancers

It was my friend, Trina, who taught me that peach color is used to represent uterine cancers.  She has been wearing a peach ribbon in my honor whenever she runs in half-marathons since learning of my diagnosis.

When I found out I had endometrial cancer, I realized I did not know much about this type of cancer.  I knew much more about breast cancer largely because the pink campaign is so strong.  It has raised awareness about breast cancer.  I knew of other cancers like melanoma, bone marrow, brain and esophageal because I knew people who survived those cancers.  Endometrial cancer was a new territory for me.

There was a documentary made about gynecologic cancers: https://vimeo.com/ondemand/nedthemovie/ in hopes to raise awareness about 'below the belt' cancers which include endometrial cancer.  I have not seen the film yet but some of the women in the online support group that I am part of shared some tidbits.

1. Equal number of women die from gynecologic cancer as men die from prostate cancer.  However, gynecologic cancers receive less than 50% of the funding than prostate cancer does.

2. At a large conference of gynecologists, a gynecologic oncologist asked how many of them heard of the pink campaign.  ALL of them did.  Many of them donated to the pink campaign causes.  Very few in the audience knew about the Foundation for Women's Cancer and none of them have donated to the funding for gynecologic cancer research.   Sadly, those are the doctors that women depend on to monitor for early detection of gynecologic cancers.

It certainly helped me understand why Dr. Busch thought my period changes were just normal.  Dr. Busch probably did not know anything about identifying warning signs of gynecologic cancers. 

I learned about the Foundation of Women's Cancer through my support group (http://www.foundationforwomenscancer.org/) and have found their website to be full of great resources.   Here's some information for you all to review: http://www.foundationforwomenscancer.org/wp-content/uploads/Facts-about-Gynecologic-Cancers.pdf.

Today Mike and I were shopping today looking for peach-colored ribbons, balloons, and paper.  We went to several stores and could not find any peach-colored balloons and ribbons.  I commented that finding peach-colored stuff is as hard as finding women who had endometrial cancer before menopause.  It ain't a peachy ride.  We'll figure it out one way or another.

Postscript: Thanks to Amazon.com... we found peach balloons and ribbons. :-)