Ask the Advocates!
Do you have a question about living with ovarian cancer that you would like to ask our team of advocates? Feel free to enter a question below! These can be about diagnosis or treatment experiences, conversations with loved ones or healthcare providers, daily living with ovarian cancer, or anything you are unsure about. Once you submit, some of our advocates will respond.
Good Evening, Gayle, I hear your dilemma. It is hard to accept differences in responses when we are talking about you and your treatment. I am such an advocate for encouraging clear communication. Do you have a patient portal where you can write these same thoughts to your oncologist or a nurse navigator? Sometimes seeing the message in writing will alert them to the disparity so that you don't have to wait until the next CT scan. Bless their hearts they are busy people, but you are your own best advocate. Warm Regards, Ellen Reed (AdvancedOvarianCancer.net Community Member).
Hi Ellen. I always thought PET scans that “lit up” indicated a positive for cancer. Now I am told that ain’t necessarily so. Radiologist (on this CT)indicated this RLL inflammatory process is improving and to repeat the study in 3 months. Oncologist says “cancer doesn’t grow smaller on its own”. I am not receiving treatment at this time. So I am a bit baffled but not complaining and can breathe and forget the situation for another 3 months when I get CT with and w/o IV and oral contrast of my abdomen/pelvis and chest. To be continued….
2019 diagnosed with endometrial ovarian cancer. All reproductive organs removed. 3 rounds of Taxol and Carboplatin. Had recurrence in 2022. “Remnant” from previous surgery and mass removed. Got thru 5 of 6 rounds of same meds due to perforated bowel. Now a nodule in RL lobe found on PET. Wasn’t big enough to biopsy and riding out 3 months till next chest CT. Then will proceed from there. Soooooo my question is this…. The verbiage is ovarian cancer with metastasis to right lung? My recent CA125 was 9.2. So can you have a WNL result and positive for lung cancer using same verbiage OR likely the lung cancer have a different label? CT due on 5/9.
Hi Gayle,
Your question is a good one and as always, one that is best suited to ask your treatment team. When I was first diagnosed with Ovarian Cancer Stage 3C and had the often usual "abdominal debulking" where every evidence or potential is removed, my CA 125 was 7.2. I immediately questioned how that was possible because there were pathology reports supporting metastatic cancer. Today, three years later I have a CA125 of 61. My conclusion is that the test is not always reliable for me. PET scan is ahead to learn where the microparticles of cancer are lurking. Be well and let us know how your CT scan went.Hi Ellen. I always thought PET scans that “lit up” indicated a positive for cancer. Now I am told that ain’t necessarily so. Radiologist (on this CT)indicated this RLL inflammatory process is improving and to repeat the study in 3 months. Oncologist says “cancer doesn’t grow smaller on its own”. I am not receiving treatment at this time. So I am a bit baffled but not complaining and can breathe and forget the situation for another 3 months when I get CT with and w/o IV and oral contrast of my abdomen/pelvis and chest. To be continued….
