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Jeanne’s Story (Endometrial Cancer)

Jeanne's Story (Endometrail Cancer)Hi ladies! 🙂

I am a 43 year old woman who thinks she has been misdiagnosed by doctors for over a year. They came up with multiple scenarios of what was wrong with me, most that always changed. They thought maybe I was blocked up, gaseous, pre-menopausal, and/or had wheat belly (too much wheat in my diet), yet my symptoms remained the same.  Back in January I continued with feelings of distendedness, feeling full all of the time, heavy bleeding, changes in periods, as well as just overall fatigue. I worked through it all and continued my days as normal, I worked out, did housework, worked, hung out with friends, everything!

After yet another visit to the doctor (my normal doctor was out and we had to see a nurse practitioner) I was put on gas relief pills. A few days later I was in so much pain I was crawling on the floor. Unbeknownst to me I had a cyst that had ruptured. The pain went away and the nurse they said they would just dissipate into my system. They scheduled a CAT scan after and when the results came back no one took note of a mass that was already there at 2 mm. Whether they thought it was another cyst or not, I still do not know.

After still having heavy bleeding and changes in my period for months they said I was producing too much estrogen and not enough progesterone and I was pre-menopausal. The bleeding was just too heavy and I was still walking around with the same distendedness and symptoms as before. I needed more answers, so I went back. I had a vaginal scan which they said was inconclusive. I finally had an MRI, which unfortunately showed a mass on my uterus and ovary, surgery was recommended immediately.

A week later we found out I had endometrial cancer, stage 3A. Where did my life go?? My head was swirling and still does some days. The cancer was in my uterus first and had traveled to my ovaries. It was just overwhelming. I had a full hysterectomy where they removed everything and tested everything. Mine had not traveled to my lymph nodes but I have been diagnosed with a rare cancer- clear cell andocarcinoma (CCA). There is very little research on CCA and the best treatment is not known as they have few patients with this (if anyone has any info on this please pass  it along). I am in chemo treatment now. I am being given taxol and carboplatin along adjunct radiotherapy to my vaginal cuff in a couple of months. I am just on my second round of chemo and I truly give credit to all you ladies who have gone through this!!! YOU ARE ALL AMAZING!! I have a wonderful support system that keeps me going as well. I cannot say how blessed I am to have friends who have hearts of gold and who pick me up and give me laughter when needed. We have reasons to smile every day. 🙂 Some days you just have to look a little harder to find your rainbow – color it how you want. 🙂

I also have been diagnosed with Lynch Syndrome as well. My biggest obstacle is that there is a 50/50  chance that I passed down this gene to my son. I am not sure on how to have this conversation with him, but I do want him tested so we can do everything preventative as necessary. I am an advocate for the genetic testing and of course for endometrial cancer and any cancer!!  Make sure you get early screening and to be an advocate for your own health ladies, as too often they look at our chart and we get ‘pigeon holed’ as they say. They heard the same problem but are not coming up with different solutions! If you can find everything from an MRI, a CAT scan, or a vaginal CAT scan then why not do it!! What about the blood tests?! How many times have you had blood drawn? Why not make it mandatory to test the CA-125 and CA-19 during your routine pap test?? I find no logic to not do testing due to all we know and all we have had to go through.

I am at the beginning of my treatment and have a good five months to go! Keep the motivation coming ladies, as you know it is easy to slip into negative mode. You are the true heroes of today!!! My next venture is looking into the DES estrogen shot from way back when. If anyone has heard of this please let me know. I am looking to find the origin of my CCA. FIGHT LIKE A GIRL! 🙂

Jeanne
Ohio
Submitted 12/16/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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22 comments

  1. You are more than amazing my love!! A true super hero!! Love u!

  2. Love you Jeanne! You are such a fighter! We are all here for you and know that we will be with you the whole way! And if you ever need a thought… Just remember… The Moll Center will let any “quack” in there to make you smile! Xoxoxo Tina ( oh and surgical Ray! Ha!)

  3. YOU DO INSPIRE DEAR!!!! Well written and from the heart 🙂 !!! You will beat this and help others get through their trials as well!!!

  4. What a truly courageous and brave individual you are to share your story. I am certain your story will inspire others to educate themselves in all the ways out there to become their own strongest advocates. May God bless you as you traverse this part of your life’s journey.

  5. You, JJ, are the definition of strength. Such a powerful and inspiring blog, soul sister.
    You WILL get through this difficult chapter in your life; cannot wait to celebrate your defeat next year JEANNE 1 CANCER 0 !!!!!!!!!!!!!!!!
    Love You!

  6. So I know sometimes you don’t feel strong but let me tell you…you sound strong! Your strength shows in every word you write! You , my friend, are one of those amazing women that you speak of, you have been the support system countless times for friends and you are an inspiration and a lesson in strength, compassion and courage. I love you and I am blessed to call you my friend! Go fight!!!

  7. Jeanne , I don’t know you personally. I met Brian when he came to
    Boardman to rally for a little boy in his own fight
    I know with him behind you things will be okay
    I will pray for you and seeing your positive attitude
    I know in my heart you will beat this. You both
    Are such an inspiration to many. Positive thoughts
    For a speedy recovery.

    • hi Patti!! thank you so much for your kind words:) i really appreciate you reaching out! i might have met you… i was Batgirl:) and that was one of the most inspiring things i have experience in my life!! we were all very blessed to be a part of that night. Jayden is a true hero and inspiration. maybe we’ll meet again someday! hugs!!

  8. I realize we’ve never met, but Brian has shared your story. Many prayers are continually being sent your way as you walk through this challenging journey. You have shown amazing strength, and I am sure you will continue to do so. Will keep you in my thoughts…

  9. Jeanne, Thanks for sharing your story. You hear so much that it just takes one correct physician to find the answer to an illness that apparently evades everyone else! So glad you finally got the right answers. Thanks for sharing and you are in our prayers as you continue to march forward to beat this thing. Thanks for the names of the additional pap test items. I am getting one soon and will definitely mention this to the doctor to do on my test. Glad you have such a great support system.

    • thank you so much Debbie!! i appreciate you thinking of me and appreciate your prayers- keep them coming:) the additional tests are blood tests that are so easily done . these are tests that can test for so many issues, not just ovarian cancer. such as endometriosis, unterine fibroids. liver disease, pancreatitus, colorectal, lung, breast, cystic fibrosis and of course any benign tumors or cysts as well. and im sure there is a few that i missed. My support system is amazing and gets me thru most any time i am having a bad day or moment:) its only been litle over 8 weeks and i am overwhelmed and humbled by the giving of time, thoughts, prayers from everyone:) i am truly blessed . i will post the same thing about the tests as well for awareness for all women! thanks Debbie!!

  10. Love you all so dearly!!!! you are all deeply in my heart and you keep my spirit lifted so high!!! 🙂 love you!

  11. Thoughts and prayers for strength through your battle. Keep fighting. Hugs…

  12. Keep fighting, May God give you strength and healing through this.It will pass.I was diagnosed with endometrial pappilary serous& now they say its ovarian yet its still serrous rare cancer.I finished carbo taxol last oct.2012.I had a recurrence @6months.cancer spread around abdominal area.then I was given doxirubicen & it did not work so they put me on avastin not working now he added topotecan to see if tworks better combined.I pray carbo & taxol will work for you.Keep fightin…Olivia from Texas.

    • Olivia i am so sorry to hear this. did you have a full hysterectomy and have ovaries removed? did they also give you radiation to your abdominal area? i have read about these medications for both of our rare cancer cells as treatment. Olivia you have tons of prayers coming your way from me. I HOPE and Pray these drugs are what kicks it all and KILLS these cells for you!! You keep fighting like a hard core
      Texan woman!! and i will too!! please keep in touch I want to know how you are! XO!!!! a million hugs!!
      Jeanne

  13. Hello Jeanne,
    You are a very strong woman and I send you lots of positive energy. And never forget that healthy lifestyle and positivity REALLY supports your body to heal.

  14. Thank you for sharing your story. I am 43 years old and going through a similar situation now. Fortunately for me, I have a very good gynecologist who was very aware of my symptoms. I had a scope, D&C and ablation done on 12/9/13 to alleviate the issues. I had a very good experience with the ablation. Unfortunately the biopsy report yielded cancer cells were present. I am scheduled for a total hysterectomy in two weeks. Doctor commented, “Let’s get the damn thing out now!” (LOVE her attitude) They will be taking everything as on my post-op appointment, I had a 4 1/2 cm cyst on one of my ovaries. Needless to say, my head is still spinning from all of this. So thank you again for sharing your story! Continue to FIGHT LIKE A GIRL!!

    • please keep in touch and let me now how your surgery goes!! i can help there after as i am halfway thru treatments as of now! would over to help and talk and go thru the motions with you and expectation and whatever you need! yep- it continues to be surreal- but you will have good days where you never think anything is going on with you!!:) thinking of you…recovery from surgery with full hysterectomy will be hard- but about 3-4 weeks out- you will be Ok!! FLAG!!!

  15. Hey, how is Jennie doing now? Please let me know.

  16. Any updates? I hope you are feeling fantastic at this point. I am very curious to learn about Lynch Syndrome. My symptoms sound very similar to yours, and Lynch has always been on my mind as both my paternal grandfather and great grandfather passes early due to colon cancer.

  17. Has anyone heard from Jeanne?

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