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Got diagnosed April 1. I don’t have my oncologist consultation till the end of the month and I am really struggling with the wait.

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Replies to "Got diagnosed April 1. I don’t have my oncologist consultation till the end of the month..."

Hello TCY,

One thing you can do right now is to make sure that all is in place regarding your imaging tests and get prepared for your visit with quesitons and put together a binder to organize the care that is coming.

Start a 3-ring binder and obtain copies of your diagnosis reports, medical and lab reports, especially obtain disks from where you were imaged (obtained at Medical records for a small cost). Use folder tabs to organize your care in a 3-ring binder for: Diagnostic/Pathology, Labs, Resources, Finances, Treatment options, pamphlets etc. and a zip-up pencil holder that fits into your binder to collect medical recipts and a separate one for disks of your imaging results and healthcare business cards you obtain. This may help your wait and you'll be prepared when things start speeding up and you don't feel so well. You'll need a place to keep these items to simplify your life. Also, do not rely on communications b/w providers. Be your own adovcate and direct the sharing of information and follow up to make sure it's done. I work in healthcare and this is a vital tip.

Hand carry in your imaging results that you get from medical records to your oncology consult. Call the provider office also and the imaging center and see what type of electronic sharing software they use.

For example, my imaging company shares information with Mayo in Florida using "Power Share". I was able to request that my biopsy be done during the initial consult visit because we lived so far away to save time by using this tool. You need to completema "Release of Health Information" form to share information between providers. This is why it's good to have a disk also to carry in also in case it's not shared for some reason and falls through the cracks.

I was diagnosed March 8th with an agressive endometrial adenocarinoma from that expedited biopsy. It's a high grade cancer and my surgery is scheduled for April 11th after all of the preliminary appointments. Try to get as many appointments scheduled in one day, spaced apart to speed up the process.

You need to see a Social Worker to help you with life aspects of care too, Financial Counselor. Now is a good time to research online also what other types of treatment are available so you can discuss this with your doctor. Do you need genetics counseling, would you benefit from immunotherapy and it may be too soon to tell until a biopsy/surgery take place, if needed.

This is a good time for you to get some important things in place.

I wish you well in your journey. We are walking together and you are not alone here. JC

@tcy941 Did you see the oncologist at the end of April as planned? If yes, what is your plan? Has a hysterectomy been scheduled? I found that once I had a treatment plan and knew what was scheduled that I started to feel less anxious. How are you feeling today?