I was diagnosed 30 years ago, and thought it was the end, and I communed with ants and bees, thinking that community and ancestry was what life was about...ended up I lived, at least for the short time till I die.

I've been on this road with my sister. My best advice is get several opinions on treatment.

I will try to get several opinions (certainly more than one), and to research as much information as I can digest as to treatment options available to me.

...agonizing. My BC was 4 years ago and things do get better. Hugs to you...

right back atcha

... Thank you.

and yes, waiting is so hard!

Best wishes for the best outcome

You'll be in our thoughts and prayers.

be sure to make a book of everything the doctors say. If you have a S.O. take them with you
to all the appointments because you'll hear only part of what is being said and you won't be able
to tape or remember everything.

you are a part of the club no one wants to join, lean on it's members for support.

I don't know much about that particular kind of tumor, but if it's really self-contained, it should be an in-and-out procedure with residual treaments.. If it's spread, that's another ball game. Here's hoping to you it's self-contained and easily exrtractible.

Best of luck you you,

- t

as large as yours and probably not the same type, so your experience will be different. May I make a few suggestions that helped me as I went through this very scary process?

1. Today, start an Excel spreadsheet on your computer for every (and I mean every) doctor visit, hospital visit, test procedure, flu shot, etc., to include the date, doctor type, doctor name, purpose of visit, site of visit, and results. Right now, enter in your CT scans and needle biopsy dates. As you must have noticed already, you will be overwhelmed with a wash of strong feelings, worry, fear, etc. You will not be able to remember things unless you go right home and write them into your spreadsheet. A year from now, one of your docs will ask you when you last had a Dexascan/breast MRI/flu shot/pneumonia shot, etc., and you will not know unless you have your spreadsheet with you. Despite all the new electronic medical records, you'd be surprised how rarely different docs and hospitals share info on the same patient. It saved me a lot of aggravation.

2. As someone else suggested, take a very organized friend with you for the first few months so he/she can do the notetaking, etc. You will miss things because your mind will be whirling around.

3. When you get a firm diagnosis, get a page describing exactly what you have and keep it handy in a folder. All your docs will want to see this. You will have many docs -- oncologist, radiologist, surgeon, etc., and they don't often coordinate very well with each other.

4. Get a sturdy folder in a bright color (you don't want to lose it!) and carry it around to every appointment without fail. In this folder, keep an updated list of all your meds; a list of all your docs and their addresses and phone #s, including your GP, gyno, etc.; that diagnosis page; a blank piece of paper to write notes on; and the latest copy of the Excel spreadsheet you will make today. You cannot imagine the millions of times you will refer to this spreadsheet -- it saved my sanity.

5. Keep every communication with the insurance company, docs, etc., in a file folder in date order in your file cabinet. Make it a habit to file them immediately. One of my docs retired suddenly, went off in a huff without arranging for his patients' files to be transferred, and the only way I could find some of it was to look at my insurance bills.

I'm so sorry you're going through this. Try not to panic (hard to do!). If you want to PM me, feel free to do so.

staging will be done next week, but it will be III or IV by definition

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/IBC

At least it's hormone receptor positive.
And I have Maine certification for medical marijuana.
(just no weed, yet)

there are statistics, and then the upper limits and the lower limits of those stats.

You just never know where you'll be, do what you can and stay positive.

I'm a tough old chick with untapped reserves of strength and kick-assedness, including stubborn-headed will.

"Let's do this!" /cue cheezy 80's movie montage music/ "Yeah!"

^getting my attitude warmed up

and positive attitude! I do believe that mind over matter does play a role in our destiny.

Be well and keep us informed

Even if you haven't had good experiences with groups a cancer group helps very much .

Last edited Thu Dec 4, 2014, 04:33 AM - Edit history (1)

Mine was Infiltrating Ductal, Stage 2, but I might be able to help you decipher reports.

Speaking of which...ask for copies of all reports. Blood, X-ray, Lab, whatever. You have a right to these, and you might want to refer to them later.

The best advice I can give to you is this: YOU are your own best advocate. Do not be afraid to ask questions...and to demand the answers.

Have hope.

but staging won't be official until after tomorrow's PET scan

I'm just procrastinating removing the bandages over the port-a-cath in my upper chest. Am I going to need a Borg name?
6 of 1
1 of many
?

the bandages. they took weeks to fall off. as the nurses told her they would.

she wouldn't even look at the port, just off to the side like it wasn't even there.

The bandages finally krinkled up and fell off. She still won't get the port area wet. .

Good luck and my thoughts are with you on tomorrows PET scan.

not sure about the bandages, but 7 of 9 would not be too bad, if only our medical field were so advanced.



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