NanHope's Journey:

Survivor: Ovarian and Fallopian Tube Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 13 years ago, Female, Age: 55, Stage IA

  1. 1
    • NanHope
    • Experience with Ovarian and Fallopian ...
    over 4 years ago
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    Diagnosed

    Oh No

    In November, 2003 I was diagnosed with a rather rare type of Ovarian Cancer. I was 41 years old with 3 kids aged 17, 14 and 8, and I was terrified. My symptoms had been so vague, easily overlooked - except for nagging and persistent indigestion (high up, like heartburn - it came every day by the afternoon and it's what sent me to the doctor). I had a normal gyn exam in Sept 2003; I told my OB/GYN about my symptoms and that I was going to a GI doc to have it checked it. GI doc wanted to do a complete workup, but after a normal Colonoscopy sent me for a CT Scan immediately because she could palpate something in my abdomen. CT showed that I was FULL of cysts! Could not see my ovaries on any test (CT, Ultrasounds - internal and external). Off to a GYN/Oncologist I go! Surgery the next week - full hysterectomy (hello menopause :), and diagnosis of Granulosa Cell Ov CA, stage 1 (it had NOT traveled beyond my left ovary - a huge tumor, but no mets and all removed). It took me a while to digest this news...I had convinced myself it would NOT be malignant, and it was :(

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  2. 2
    • NanHope
    • Experience with Ovarian and Fallopian ...
    over 4 years ago
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    I'm healthy/cured!

    Celebration

    These years after my initial diagnosis I was reassured by my doctor that I was cured :) He explained that my type of cancer, if it does recur, tends to pop up in one place and stay there, rather than spread; since I was caught at stage 1, things looked really good for me. I sort of forgot I had had cancer and lived my life :) I would ask my doc if I should have CT Scans periodically to make sure everything looks OK in there, but he said no, not necessary. He just did exam and blood tests every 6 months (CA-125, and inhibins or tumor marker for my specific type of CA). I remember almost begging for a CT at my 5 year mark - just to celebrate and make sure! Nope, don't need it; didn't get it :( But life was good - I was healthy, my kids were growing up and I was there to see it! God is good.

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  3. 3
    • NanHope
    • Experience with Ovarian and Fallopian ...
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    If you don't believe in a higher being the next events of my life will sound like crazy coincidence, and that's fine with me if that's how you see it. I tend to think God had a hand in it, however. Feeling great! NO symptoms of ANY kind (in fact, I had started to train for my first 1/2 marathon :) Through freaky accident, I broke a rib in February 2011 - the pain sent me to my PCP who sent me for my yearly blood work (just the basic stuff that she did - I still saw my GYN/ONC for my CA stuff every 6 months). Blood work showed I had one elevated liver enzyme (alkaline phosatase), which she rechecked in a few weeks - still elevated. Sent me for a liver ultrasound (normal) then a bone scan (bone things can elevate that enzyme). When I went for the Bone Scan, the radiologist (a friend of my husband) told me he was going to run basic abdominal CT Scan because I hadn't had one since my diagnosis (thank you, life saver!). He could see masses in my pelvis on that CT. Back in the next day for CT with contrast - yup, huge masses in my pelvis that I NEVER would have known were there (I had NO symptoms! Was feeling GREAT!) Whirlwind begins: my gyn/onc was going on vacation so couldn't do my surgery for about a month (no, thank you - not waiting); went up to cancer center in LA area - City of Hope. From the minute I walked there, I knew it was where I was meant to be (if I had a nickel for every time I said, "Thank God I'm here!"...).

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  4. 4
    • NanHope
    • Experience with Ovarian and Fallopian ...
    over 4 years ago
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    Debulking surgery

    Procedure or Surgery

    My new GYN/ONC is wonderful!!! I liked my first one, but I love this one! Had surgery May 2011 - tumors removed from my pelvis, colon resection. Luckily the tumor came right off my urinary organs (they had thought I'd need urinary reconstruction but I did NOT!) Unfortunately the cancer (which is a type that is NOT supposed to "travel"), HAD traveled :( to my diaphragm and small intestine (which my surgeon found and removed). I was in the hospital for 1 week (turned 49 in there!). I was determined to do anything and everything to fight this XXX cancer - my surgeon brought in my medical oncologist, a very renowned Ov CA expert in chemotherapy. Next step...

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • NanHope
    • Experience with Ovarian and Fallopian ...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    My new OV CA chemo "guru" walks into the treatment room and tells me, "Have your ears been burning? We've been talking about you a lot behind your back!" I loved this funny guy immediately! The deal-io: It seems my initial pathology was misread - C of H pathologist sent my specimen to Mass General (a national referral center for Ov CA pathology) and they felt my tumor is actually a Sertoli-Leydig tumor (same "class" of tumors, but different, even MORE RARE type of cell). Super. And it usually occurs in women 25 and younger - leave it to me to have youthful ovaries! Anyway, decision is made for chemo - I told doc, "I'm young, I'm healthy, let's HIT IT HARD!" He agreed. I did six rounds of the Armstrong Protocol: Taxol IV (through an Piccline in my left arm), and Taxol and Cisplatin IP (through an intraperitoneal port in my abdomen). No question, it was tough. The usual side effects (nausea/vomiting, fatigue, hair loss - every strand!). But I put my head down and powered through that chemo! I envisioned it going right to the cancer cells inside my body and destroying them! I loved that chemo because it was my army fighting my battle...I just pray it did it's job well and got all of the enemy...

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • NanHope
    • Experience with Ovarian and Fallopian ...
    over 4 years ago
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    Anniversary

    Celebration

    It's been one year since I finished chemo. I was in my doctor's office this week for a checkup and seeing all the folks getting chemo made me feel to weird - part of me wanted to be with them getting chemo. I think I'm still dealing with the "treatment's over, now you're done" letting go that happens when you finish treatment. You put all your energy into the fight and then...you're done! It's over - now what? When you're in treatment you're actually DOING something - it's an adjustment when it's over and I think I'm still adjusting, one year later. But I AM loving life! I do love my life (don't we all?!) and I want to stick around! I have to deal with the reality that, since I've had one recurrence, chances are I'll have another. I hope not - especially since we did that aggressive chemo - but I have to be vigilant. And NO power on earth will keep me from getting yearly CT SCANS!! My advice to other women: if you want a test/scan, don't take no for an answer! And, I hate to say it but it's my reality, even when you don't have symptoms and you feel great, this beast can be growing inside you. Follow your gut, get screened/checked and be your own advocate. We deserve nothing less! God bless us all on this journey - and we're NEVER alone. God is good!

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