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Refractory Ovarian Cancer

Last October I was told I most likely had cancer. It was first noted by a pre-op test(unrelated) that my HCG levels were slightly elevated. I was not pregnant. This was followed through blood testing, CT scans, MRI's and Ultrasounds. My HCG never went too high, yet 2 months later the ultrasound detected a mass. The assumption was that it was going to be germ cell. However after surgery and a second opinion pathology report run by Mass. General, it was said to be Epithelial Ovarian cancer.I had a hysterectomy and was staged as IC. Not Bad! However during my  6 treatments of Carbo/taxol, my CA125 climbed. After getting a second opinion and consulting my gyn/oncologist and medical oncologist it was determined that I should immediately go on Doxil. Three treatments later my CA125 continued to climb. My medical oncologist insisted I stop my chemo(because it wasn't working) and go on hormone therapy until she could get a visual on the cancer. CT scan and PET scan were okay. It was my opinion that I go for a 4th round of Doxil. I had to fight for this and now for the first time my numbers went down slightly. My doctor still insists I should stop. I am now going to see another Doctor.
I am still up for the fight and not having a terrible time with Doxil. However the new doctor is suggesting possibly adding Carbo to the Doxil, switching to Topotecan or a trial of Oxaliplatin/Topotecan. My first doctor labeled me platin resistant.
I am a strong person, yet with all the conflicting information I am being told, I am feeling confused and a bit nervous. This is my life and I need to make an important decision. This wasn't supposed to happen with Stage I. What are your thoughts or suggestion?
3 Responses
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242604 tn?1328121225
MEDICAL PROFESSIONAL
Dear Horselady
thank you for your follow up. I hope the topotecan is good for you. i think that is a good choice
best wishes
Helpful - 0
Avatar universal
Thank you for getting back to me. I just came back from my seeing my gyn/onc. There were many biopsies taken of everything you mentioned (abdomen, 7 lymph nodes,, etc). My doctor along with all the other opinions (including Mass Gen) agree that this is most unusual. From the start of diagnosis and the involvement of the HCG hormone, nothing really made any sense. The term used on me is: MOST UNUSAL!
Yesterday, I went to a new medical oncologists who insist the minor drop in my CA125 of 15 points, means Doxil isn't working. He suggested a trial of oxaliplatin/topotecan. I opted for Topotecan alone since everything at this point is guess work on me. I am getting alot more frightened. Noone knows for sure what's going on with me.
Please know I appreciate everything you have to say.
Helpful - 0
242604 tn?1328121225
MEDICAL PROFESSIONAL
Hi there,
Thank you for your information.
I am confused on one point: is there any evidence that you have cancer right now.
Do I understand this correctly that you do not have any sign of cancer on CT scan or PET scan?

If you truly had Stage I ovarian cancer, this is very unusual.

so let's start by talking about staging.

Stage I means that the cancer is confined to one or both ovaries and there is no sign of spread. To truly have that diagnosis, one has to have many biopsies of lymph nodes, the lining of the abdomen, the omentum.

Even if there is no obvious sign of spread, 20% of the time, if enough biopsies are done, metastases will be found.
so my question to you is: at your first surgery, how many biopsies were done to evaluate for spread? Is it possible that you really have experienced a more advanced cancer?

Second question: what exactly are the CA 125 values doing?

Third question:what other medical problems do you have?
how old are you?
are you on any herbal medications or teas?


Finally You should ask your doctor about getting proof that you really have a recurrence. this can be done with a surgery called laparoscopy or even a laparotomy.

best wishes
Helpful - 0

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