Replies to NED stands for “No Evidence of Disease.” This means your scans don’t show anything abnormal. It…

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Gynecologic Cancers | Last Active: 13 hours ago | Replies (10)

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@lathomasmd

NED stands for “No Evidence of Disease.” This means your scans don’t show anything abnormal. It does NOT mean cure. You still can have active cancer that is too small to see. But it’s the next best we can hope for. The best thing to hope for is years and years of NED. I’m currently one month into my second NED. I’m also going through chemo again, for the third time.
For anemia (low red cells), they give blood transfusions. For low white cells, they give Neulasta. But for low platelets, they don’t give platelets until it low enough to be life-threatening, which is 5-15 (thousand).
I’m very concerned that your oncologist won’t spend time on your questions. Please consider getting a second opinion, and a third, and a fourth if only to see if you can find a better communicator. If you know other cancer victims, ask whom they see and how they like them. Join a local support group to ask about their doctors. The chemistry between you and your doctor is a HUGE factor in a cancer patient’s stress.
Another thing that might help is to only bring 3 questions per visit. If you bring your long list of questions and expect to answer them all in one visit, unfortunately, most doctors don’t have the time. Bring your entire list of questions to every visit so you can write down the answers you get, and gradually whittle it down. Good luck!

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Replies to "NED stands for “No Evidence of Disease.” This means your scans don’t show anything abnormal. It..."

korinja | @korinja | 13 hours ago

Thank you, this is such incredibly helpful information! And congratulations on your second NED! I hope your chemo cycle goes as smoothly as possible! < 3

Less than 3 months ago, I went to the ER (not at Mayo) for what I thought was antibiotic-resistant pneumonia. I was diagnosed with a pleural effusion (and told that it was a complication from my pneumonia.) They drained 2 liters of fluid from my lung which built back up almost immediately. I was then diagnosed with stage 4 cancer of an “undetermined gynecological origin.” ( I also have Lynch Syndrome, and had a preventative full hysterectomy and oophrectomy in 2021, so this was a confusing and understandably horrific diagnosis for me.) I was not at a particularly good hospital, and a friend got me a referral into Mayo and I was able to be seen there within a couple of weeks.

In the initial meeting with my oncologist, they diagnosed me with peritoneal metastatic carcinomatosis and told me that I had less than 3 months to live if I did not start treatment immediately due to advanced metastasis and a CA125 in the 300s. I’m 42 years old and have never had any health problems. My oncologist moved mountains to get me into chemo three days after our initial consultation. I had a second opinion scheduled at MD Anderson in Houston but was far too sick to be able to travel at that point. Mayo is by far the best cancer hospital locally and I was just grateful to be able to be treated there. My oncologist called me personally every time there was an update on any of the testing that was redone from the crappy hospital or to discuss treatment in the early days. (Although I have Lynch Syndrome, this does not appear to be a Lynch tumor, so evidently it leads to a more complicated course of treatment.)

I started feeling much better once I had a couple of chemo treatments and did travel to Houston for a second opinion early last month. MD Anderson said they would do the same course of treatment I was getting at Mayo, and relocating to Houston for treatment wasn’t ideal for my family situation.

After my second opinion in early April, my oncologist and I have not actually spoken. We communicate through the portal and one of their nurses always responds to my messages. I have needed to contact them about a lot of extra things in the last couple of weeks (ADA and LTD paperwork with short deadlines, a new PCP wanting labs, a broken tooth and whether I could go to the dentist to get it fixed, etc etc.) I check with them about anything that is medically related because this is new for me and I don’t want to do something or get advice from another provider that may negatively impact my cancer treatment.

As someone mentioned there is a steep learning curve at the beginning of this process and this has all happened so quickly for me. Getting information from all of you has calmed my nerves a great deal (!!!) and I think the number of questions I have will lessen over time. At this point, I have upcoming appointments with my hematologist and palliative care doctors (both of whom I really like) and will save my questions for them and only when I see them in person. I don’t want to be considered a problematic patient. I also definitely need to have resources outside of my oncologist, which I will continue to work on. Thank you all so very much, from the bottom of my heart. < 3

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