NOT GETTING CHEMO ANYONE ELSE IN MY SHOES

NO CHEMO ANYONE ELSE NOT GETTING CHEMO?

Hello,

So glad to find this group. It's been 1 year and 6 weeks since my diagnosis and first surgery. I have two cancers, Ovarian Stage 1 (epithelial) and Uterine Stage 1. I've never had chemo which freaks me out because I feel like the only person with ovarian cancer TO NOT GET CHEMO. My tumor was huge the size of a cantaloupe and I remember the Dr saying you should be dead but obviously I'm not. My questions are has anyone else NOT HAD ANY CHEMO? And also what is your standard treatment? (Meaning how often do you get blood work, catscans, MRIs etc?

Thanks! Angie

6 Replies

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  • I think it should be up to you, and now your fighting 2 cancers, it could work, or might not work. But this is your life do what makes you comfortable, sending prayers and love your way💕🙏🏻

  • Also their are a lot of ladies that went through chemo and are living longer, hang in there.

  • try getting a second or third opinion

  • Hi Angie,

    First of all, I'm so sorry you have had to go through this. I can't speak for Uterine cancer, but it is typical that stage 1 epithelial ovarian cancer is treated with surgery and if it is optimally debulked (ie it is all removed and nothing spilled) and the additional biopsies come back negative, most of the time they don't recommend chemotherapy. Certainly if you are concerned you might consider going for a second opinion so that someone else is looking over everything about your case. It might give you some comfort if they come to the same recommendations. Part of the reason why you don't hear of many of us who escaped having to go through chemo is that the vast majority of us aren't diagnosed until a much later stage when the cancer as metastasized (spread) beyond the ovaries and into the pelvic and abdominal cavities. Most of us are Stage 3 or 4. The good news is that the prognosis for those diagnosed as Stage 1 is really positive.

    That your tumor was very large isn't necessarily the factor that would suggest you need chemo. Since you were diagnosed Stage 1, that suggests to me that they were able to remove the tumor intact. That is really good news.

    The National Comprehensive Cancer Network (NCCN) has written a set of guidelines for many cancers including ovarian cancer and is a useful resource to read. The link for the patient ovarian cancer guidelines is nccn.org/patients/guideline... It describes the treatment recommendations for various stages and types of ovarian cancer. Page 54-55 of the pdf file describes the treatment for Stage I ovarian cancer.

    Regarding follow-ups, that seems to be variable depending on the doctor and the particulars about the patient. The above mentione guidelines have a chapter on follow-ups. Most of us start out for the first couple of years seeing our doctors once every 3 months after we've been determined to be NED (having "no evidence of disease"). Whether we have CA125 and a CT Scan or just the CA125 is dependent on a number of variables. For some of us, the CA125 blood test is very sensitive and starts to rise months before anything would be visible on a CT Scan. Hence there isn't the need to expose us to CT Scans until we are either symptomatic or have a rising CA125. For others, the CA125 isn't a good marker and are dependent on listening to their bodies for symptoms and CT Scans.

    I hope this helps to waylay some of your fears about why your doctors didn't recommend chemo.

  • I think you are very brave, I was stage 2 it was recommended that I did chemo. later on it was recommended that I do radiation, worst thing to do, as I recently while celebrating my one year since my surgery and diagnoses, in mexico had to have emergency surgery due to a blockage in my bowels. my doctor in mexico told me radiation gave me scar tissues so bad my intenstines were all a big mass.. now I wish that cancer had killed last year, as this new condition now can kill me at anytime, and now I absolutely can not eat healthy!.. I miss my fruits my veggies, I miss my life!

  • We all miss our lives. I'm still processing this new identity.

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