Uterine clear-cell carcinoma, chemo treatment unknowns

Hi Lou, I’m catching up on your cancer journey and also live in Wisconsin. Are you in central, southern, or northern Wisconsin? There are a number of options for great cancer care in our state. If you can give me the general area, I’ll try to direct you to a reputable oncology clinic. Are you currently on your own insurance through work or Medicare with a supplemental provider? If so, you’re able to chose where you’d like to be.
I’m so sorry to hear about this lack of response from your oncologist and very little information as follow up. It’s a very scary time to be left floundering.

Regarding your chemo, it really is important to stay on a course of this even if you’re trying to secure a second opinion. Even though you had surgery and feel the cancer is gone, your team may be doing some ‘clean up’ chemo to make sure any cells that may have been non-detect are caught. When you had your breathing reaction, where you home or at an infusion center? There are medications which can given to you preemptively to help you avoid a repeat episode.

You mentioned not having a support system. We all need that when we’re going through a critical time in our lives. As you can see you have lots of us in Connect who know what you’re going through as most of us have had some personal impact with cancer or other medical story. For more of a direct link to cancer questions and assistance, The American Cancer Society has a number of wonderful services available for cancer patients such as a Cancer Hotline to call, they provide rides to and from treatment, etc. https://www.cancer.org/treatment/support-programs-and-services.html

@colleenyoung has provided the link to contact Mayo either directly for yourself or a link for your provider to give a referral. Have you had an opportunity to follow through yet?

@lou277 Colleen had a great suggestion here to call the Billing and Insurance folks at Mayo. I called them recently and they were very friendly and helpful. My question was to find out what insurance I should get that would work at Mayo because I am about to loose my group insurance plan through my husband's employer and we will need to go on Medicare with a suplemental plan. I have had treatment at Mayo and wanted that to be an option going forward if I should need them. I found that the supplemental insurance plans that I could add to Medicare seem to limit treatment to the state where I live, and I don't live in Minnesota, so that was my dilemma. They had an answer for me, and now I could focus on the other things I need to do in the next few months.

We had a cancer scare too because that "pimple" on my husband's hand didn't go away, and then he thought it was a wart, so he put a Bandaid on it. About a year went by, and it looked like a pencil eraser that was kind of pinkish, and it turned out to be melanoma that had erupted through the skin, so he was off to surgery and now 2 years later he still has very frequent dermatology exams and screenings from his oncologist who he sees every 6 months.

There was a study going on at the time to test if no further treatment for a Stage 2 A melanoma ( the standard of care) or the Standard Stage 3 treatment of immunotherapy would be better if done at stage 2 for a cancer that had not spread. The results of the recent study doing immunotherapy earlier gave about a 25% better result if done at stage 2. I mention this because it may be worth asking what other options are available other than chemo.

Was he scared? You bet. I asked the questions and made the appointments and interpreted the recommendations for him because he couldn't focus on what he needed to do. It does really help to have someone help advocate for you, someone you trust. I had to learn to be my own advocate even when I was afraid because I needed spine surgery if I didn't want to become disabled. There were 5 surgeons (not at Mayo) who didn't want to help me, and that was hard, but I didn't give up because I had the choice to change my destiny if I faced my fear, and I was not going to let my fear make this choice for me.

You don't need to do everything at once. Break it down into baby steps, and try to accomplish at least one goal a day. The first is pretty easy in making a call to the friendly folks at Mayo just to get information. No harm in doing that... right? You need good information to make a good decision.

If you come on back with information about insurance, we can help support you as you take your next step. Take my hand. Let's do this together.

Hello- I just finished radiation for CCCEC III. My main side effects were nausea and fatigue. I felt like I wasn’t believed when I would mention the more rarer side effects I was experiencing so I just quit mentioning them during my visits. Trusting God.

To clarify I didn’t feel this way from everyone on my team or my family. Just a couple of people.

@sm22 Did you have external beam radiation to the pelvis? Brachytherapy? I had both of those and like you I had fatigue and some diarrhea but I did not have nausea. What other side effects did you have? I'm very sad and frustrated that when mentioned other side effects that your radiation oncology team did not take you seriously.

@sm22. Oh, that's good to know. Big sigh. I would like everyone I come into contact with for my medical appointments to listen to me and take me seriously. Unfortunately I've had a few too many encounters where someone was dismissive or even got angry. Fortunately, that did not happen with my radiation oncology team. It has happened at home, though, which is really frustrating.

Does this sound familiar to you?

It sounds Very familiar. It hasn’t happened to me at Mayo except one negative encounter which isn’t bad considering all of the medical people I came in contact with.

My radiation onc team took me seriously at least 99.9% of them. Just a couple people I came in contact with I felt they discounted what I was saying. I did have external beam therapy and brachy. The nausea and fatigue were the major issues. I am going to order some ginseng that my doctor recommended. It is from a manufacturer in WI and was recommend by my onc for cancer related fatigue. I know not all of this herb is created equally but this brand seems to be good. I’ll let you know how I tolerate it.

@sm22. Yes, somehow it's the one negative experience that stands out. Our brains are built that way because how else would we, as humans, have survived if we didn't focus on what seemed a "threat" at the time, as in a negative experience? That's what I tell myself. I know how hard it is but can you remind yourself to let that one experience go and focus on all the positive experiences you had with your medical team?

Yes I agree. I am probably sensitive to this because I feel let down by my hometown doctor
who ignored my concerns for several months before finally diagnosing me with stage III cancer. I fee if she had done her job my story would have been very different. I’m also mad at myself for not being a better advocate for myself and blindly trusting my local doctor who obviously didn’t care about me or my symptoms.