I got my diagnosis on April 15 and I need your help

Cuculigata,

I'm sorry for the diagnosis. I am 53 now, and my diagnosis of uterine carcinosarcoma came at age 51. It's a shock, for sure. 

I also took advantage of COBRA for a couple of years after I left a job. it is probably good not to burden yourself with the additional stress of finding a new insurance provider at this time. If your med. insurance is good, it will probably pay for much. I have a PPO that I pay for out of pocket as I am self-employed. It is expensive (I guess everyone's insurance IS!), has a high deductable, and pays 70% after deductable is met. What I didn't know a couple of years ago, is that if I use "preffered" or in-system doctors, many of the expenses are taken care of completely by the insurance company.

I also don't know everything about the issue of referals. I believe you should choose any specialist or surgeon you want and try to drop the feeling of being bound by the process. If you know in fact that you want to see a different specialist, you might want to just ask your insurance provider directly about its provisions regarding the particular hospital or doctor.

Appointments can take a long time to get. Don't panic, though, about getting your surgery immediately. (That is what the American Cancer Society advises.) Just do the best you can to set your appointments and get your records and lab results to the specialist. Also, I personally wish I had taken the time to get another opinion from a second gynecological oncologist before rushing into surgery.  I had a lot of trust and was not informed of all of the risks or another surgical approach (a quarter mile away at Stanford Med. Ctr.).

You're wise to reach out and talk to others. I am very private and it has not served me very well as far as health issues go. Wishing you grace and calm to meet each challenge as it comes.

You have come to the right place, as there are women here who can help you through this process . I am so very sorry that you had to find this board.  When I was told that I had adenocarcinoma following a Pap test, my gynecologist referred me immediately to a gynecologic oncologist. I had an appointment when I left her office as she made the arrangements for me (I was in a state of shock). These specialist are trained to treat below the belt female cancers. It is a must that you see one. You will likely have a hysterectomy to remove your uterus and further surgery to remove your Fallopean tubes, ovaries and a sampling of your lymph nodes. A pelvic wash will be done as well to see if there is cancer in your peritoneal cavity. From the time that I discovered minimal spotting to my hysterectomy was only 1 month. I was diagnosed with metastatic uterine papillary serous adenocarcinoma, a grade 3 cancer, stage 3a. This was followed with 6 chemotherapy cycles of carboplatin and taxol. You should not be waiting weeks or months to get treatment.

Given the type of uterine cancer I had plus the advanced stage in which I was diagnosed, I sought not just one opinion but ultimately three opinions. I am glad that I did so. You must be your own advocate!

The Affordable Care Act changed how insurance companies treat customers. They can't discriminate against you because you have had a gap in insurance coverage nor can they refuse to cover a pre - existing condition. I always thought that was wrong!

When I was first diagnosed, my BCBS did not cover all the treatment expenses, including surgery, labs, CAT scans, doctor's appointments and chemotherapy. I'm not sure how much my first year of treatment cost me out-of-pocket but it was probably about $3,000. Since my chemo treatment ended 13 months ago, My medical expenses have dropped significantly. 

I hope this is helpful. After surgery, you will meet with your doctor to review the pathology report. That's when you will be told details about your cancer, including type, grade and stage. Take someone with you, especially in the beginning, to all your doctor's appts and write your questions down and bring that with you as well. I suggest that you get a copy of both your operative report and your pathology report for your own records.

Being diagnosed with cancer was a traumatic experience but as time has gone by I have learned to cope. I am in remission ( called NED for no evidence of disease) and hope it will last a very long time. 

I am praying that treatment goes well for you, cuculigata.

Cathy

Cucu me said:

I got my diagnosis on April 15 and I need your help

Thank you Cathy,

Everything you say is very helpful for me.

I hope I'll see Oncologyst soon and go from there.

When I got my diagnosis the Gynocologist did not mention any grades and stages and I read that other women were told about this after their D&C.

But anyway I'll know later.

 

Thanks so much, stay well.

What Cathy says is fantastic as far as advice. You MUST keep your own records of all of your test results.

I just wanted to add that one of my best friends got an ovarian cancer diagnosis about a year after I got my uterine cancer diagnosis. When she met with her gynecolocial/oncologist at Univ. of Cal. San Francisco for the first time, she brought another friend (who'd survived bone cancer), and who suggested that they tape everything the doctor said on her iPhone. They asked the doctor's permission, of course.

I thought that was a great idea. You can be in a kind of haze that doesn't allow you to pick everything up, even if you're trying to write it down. And even friends aren't always viewing things critically. I did not even know how to spell lymphadenectomy - nor did I know that the term can mean taking 2 lymph nodes or taking 100.

Best to you,

j

Cucu me said:

I got my diagnosis on April 15 and I need your help

Thank you, I will do everything you are suggesting.

Drienne and No Time have given you great advice.  I know that you had a D & C, not sure if that is the same thing as a uterine biopsy or not.  I had a uterine biopsy and it came back indicating a grade 2 cancer. I wish! My subsequent pathology report following surgery showed that I had a grade 3-aggressive- cancer.  It is not uncommon to have more than one type of uterine cancer, say endometriod and uterine papillary serous or sarcoma.  If a woman has at least 10% UPSC, I've read that she would than be diagnosed with UPSC given how aggressive this form of uterine cancer is. 

Wishing you the very best outcome,

Cathy 

Cucu me said:

I got my diagnosis on April 15 and I need your help

Thanks so much for the support, yeah I'm nervous, but in control, my daughter will be with me, I should be strong in front of her.

Thank you

i am glad you will have your daughter for support.  alos glad you are checking in here with these woman. i have found them to be really comforting. good luck

blessings, j