Six years cancer free but still worried

Caradavin
Caradavin Member Posts: 49 Member
in Uterine/Endometrial Cancer #1

HI all, I have been uterine cancer free for six years (and thyroid cancer free for three years). I still have the pain I originally had in the beginning that alerted me that something was wrong and led to them finding the cancer. The pain is worse and focuses in my frontal genital area, like the fatty area above the actual genital area. I can't seem to find a doc that takes this seriously. I've gotten paps - although I don't understand how those are useful since I don't have a uterus - what are they swabbing down there? My concern is they are not looking in the right place. I think there is a lining or something that is the problem but I don't know how to communicate that or get them to check the area. I had a great grandmother who died of cancer that was in the linings of her organs and a grandmother who died of lymphatic cancer so I am ultra-sensitive to possibilities. I just recently had another blood test ran because my white blood cells are down. I am just worried, I guess. Should I keep seeking out a doc who can actually look into this or should I shrug it off as just the worries of someone who has had cancer a couple of times?

Comments

  • Meg08
    Meg08 Member Posts: 3
    edited August 2017 #2
    Trust your instincts! You

    Trust your instincts! You have to be your own advocate. You know your body best.  

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited August 2017 #3
    I agree. Keep looking for a

    I agree. Keep looking for a medical professional who can help answer your question. The pain you are feeling is real. Maybe it has a simple explanation? Or maybe not. Either way, you deserve to know what is causing it. Good luck to you!

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    #4
    Still Worried

    It sounds like you need to get a pelvic and  abdominal ultrasound ASAP.  It sounds like you are
    talking about your omentum or the peritoneum. I get ultrasounds every 3 months- I am approaching my 3 year
    anniversary in Oct, and am still checked every 3 months..  You can read my story posted in Jan 2016 NED from Stage IV metastatic endometrial cancer.

    You should also be followed up with regular blood tests- like CA125, HE4, Vitamin D, CRP, SED, HCG, plus probably many others,
    particularly those that test for the conditions that led to your cancer eg.hormones, insulin, glucose, metals, whatever. The industry doesn't
    seem to want to spend the money to follow up on cancer patients that don't have cancer. Personally, I believe comprehensive blood tests
    are one of the best things to do as problems show up in the blood well before a tumor shows up on a scan, and you can then address
    any issues that show up in the blood tests.

    Maybe you only need to get these tests once a year, but I personally belive you should still be getting comprehensive testing. And 
    ultrasounds don't have radiation.

    Takingcontrol58

     

  • pinky104
    pinky104 Member Posts: 574 Member
    #5
    Definitely get checked out somewhere else

    I complained of pain symptoms in 2014.  A very small mass was found in my paracolic gutter.  It was too small to biopsy.  My GYN/onc repeated scans over the course of a year and decided it wasn't cancer because it hadn't grown, but all of a sudden, it grew rapidly this past winter and spring.  It had wrapped itself around my ascending colon, and I had to have a colon resection.  I was at seven years from when I first was diagnosed with my cancer (UPSC), and I had to have a colon resection for the its return, plus one from where my intestines grew into the mesh I had put in me in 2012 for an incisional hernia.  I'd been complaining to various doctors that I felt like my hernia was back, but not one of them could find it.  The ultrasound is a good idea, and also, a CT scan and then a PET scan would definitely be helpful in diagnosing this.  Don't give up and assume it's nothing.  It very well might be something.

  • oldbeauty
    oldbeauty Member Posts: 378 Member
    #6
    Good feedback!

    Caradavin, I have been thinking about your post for several days and am glad you have gotten some great feedback.  Certainly, pain should be pursued and its cause identified.  I want to thank you for your post because it spurred me to research some terms and I learned something that may be helpful to me!  So thank you.  Let me tell you what I did when I read your post.  Your reference to the "fatty area above the actual genital area," I thought was the pudenda.  So I Googled that coupled with "cancer" and I found that, actually, the pudenda is a comprehensive term for all the exterior genitalia.  What I found that may relate to me was something called "pudendal neuralgia."  I read a little and found that there is a pudendal nerve that is buried deep in the buttock that can radiate pain all over the sacral spine area and into the front of the groin area.  That's the part I found worthy of my further research for a persistent ache I am experiencing.  Then, I researched anatomy drawings online and decided what you might be referring to is called the "vulva" (which I thought was a different lady part).  There is such a thing as vulvar cancer.  But you also raised a sense of a "lining" being involved, which could be the omentum or peritoneum, which can also foster cancer.  So lots to think about.  My main reaction to your post is that you don't describe what kind of cancer you originally were diagnosed with and what your treatment was and what your follow up has been since.  You might want to add that to you profile page for others' comments/info as it may help you get more pointed answers.  Perhaps you will find you don't have as much detailed info about your disease, treatment and after-care as could be useful to you and you can follow up by collecting all these records for your personal file. The other reaction I had is that you, like I did, may find it useful to use online resources to learn about the anatomical names of body parts that concern you and perhaps to Google "how to describe pain."  Anatomical precision and describing pain in ways that medical professionals can relate their training to may help the right practitioner help you better.  But as others have said, you know yourself best and if you have persistent pain, don't write it off and don't let others dismiss you.  Best wishes.  Oldbeauty

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