Uterine clear-cell carcinoma, chemo treatment unknowns

I did not get a second treatment. I was scared too after not being able to breathe. I am trying to get a second opinion. My insurance claims I have to stay in the state of Wi. That is limiting. I had surgery, I believe it is gone They are just not giving me any other options. I live alone, no real support system. I feel lost.
Lou Ann

I hope you've been able to get a second opinion since you've posted. I wanted to say that I, too, had an allergic (?) reaction to my first chemo treatment, and it was a lot: suddenly there were six people in the room! I felt my throat tingle, itch, then start to close up, but I was warned about those possible symptoms so I was able to tell them it was happening. They stopped the infusion, then re-started it (which is the protocol). I continued with my prescribed chemo, but over the course of the six treatments, it was reduced a few times. And it was still brutal, something I'm sure many can attest to. I hope you've been able to get some answers, as well as some reassurance. Best wishes.

@lou277
ThedaCare is a member of the Mayo Clinic Care Network. https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members Might they be an option for you to get care in Wisconsin and access to Mayo Clinic expertise?

Thank you I will check on this tomorrow. Feeling really sad today. I was supposed to have a video visit with my primary doctor and my Oncologist. My primary showed however my oncologist never did. We were going to go over treatment plan. I guess my cancer is not worth her time. I really have b been treated poorly through this entire ordeal. All day I do research, however I can not even get to these places because of insurance . So thank you for the information. LouAnn.

@lou277 Oops I miss this more recent post.

It is very frustrating that you oncologist was not present at your video visit. Of course you are sad. Maybe angry too? After all, this is your health and your life. Did you ask your primary doctor if they know why that happened? I know it's difficult not to take this personally but there could be all sorts of reasons that happened including video problems or a medical emergency that the oncologist had to deal with.

Would you be willing to call your primary doctor find out why the oncologist did not show up? And reschedule that appointment?

@lou277. LouAnn, Were you able to get another appointment scheduled?

I just looked up the definition of cancer survivor. It is a person who moves forward with a sense of empowerment in charge of their own healing process. is this you?

I did not get a chance to re-schedule. When she did not show up for the visit, it came as no surprise really. The first time I seen her in office it was a 4 hour wait. Then my daughter and I had a 2 hour wait for a video visit. I waited almost a month to be seen and 2+ months for surgery. I believe this all would have taken longer, however my primary stepped in and put a little fire under them. I was told that I had cancer by the internet. Yes, I opened my chart, test results, and there they were. When I had surgrey, I thought I was staying at least overnight. Within 3 hours of surgrey they were waking me up and telling me I had to go home. My eye was swollen up, could not see and they gave me the boot. So my journey started out poorly. Maybe getting a second opinion or changing doctors will help. Like I said My insurance said I have to stay in Wisconsin. My primary will give me a referral anywhere.. She is very accommodating. I live alone and I really do not have a support system. So, ladies and gentlemen, I really could use some help. Lou Ann Lou277

Lou Ann, I wonder if your cancer care might be coordinated through Mayo Clinic in Rochester, Minnesota. I know that you said your insurance limits you to getting care in Wisconsin. Mayo Clinic Health System has community hospital locations in Winconsin.

So here's what I'm thinking. Call Billing & Insurance Patient Account Services at Mayo Clinic in Rochester. An agent at Patient Account Services may have suggestions on how to a) appeal to your insurance company to get an initial consult at Mayo Clinic, MN and b) continue cancer care at a Mayo facility in Wisconsin for ongoing treatment.

It's time to think outside the box. Making the phone call might be the first step.

I am still trying to do this second opinion. I do not know how to navigate this process. My primary will write me a referral, however to whom? I need someone to show me the step-by-step process to get it done. I have placed a call to her nurse, and I am still waiting. Since I told the cancer team that I wanted to get a second opinion, I have not heard a thing from them. Can anyone give me a name of a doctor(s) at the Mayo clinic that I can start researching? Any help at all that you can give me will surely be appreciated .thanks,
Lou Ann Lou277

@lou277, Mayo Clinic makes submitting a referral easy. You don't need a specific doctor's name. At Mayo Clinic, the clinicians work as a team.

You can self refer by filling out a form online or calling Mayo Clinic appointments directly. It is all explained step by step here: http://mayocl.in/1mtmR63

A physician referral can help. It would be easier for you, and sometimes it helps the process to when doctors can speak with doctors and give a full picture. Give your primary care physician this weblink about how to refer a patient https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient

Keep asking questions, Lou Ann. We're here to help.