Lesson 2: Diagnosis, Tests & Staging
Diagnosis, what you need to know and biopsy procedures.
The Diagnosis
DO NOT PANIC. Repeat this phrase to yourself until you can breathe again. Cry, scream, punch the wall, sob, wail and then get down to business.
A diagnosis of breast cancer is frightening but it is NOT a death sentence. Where you begin your tour of the medical community and surrounding healthcare facilities is going to be based on HOW your diagnosis was arrived at.
Did you find a lump? Did your primary care physician feel something? Was there redness, itching, swelling, pain, fever? Let's assume that by some magical procedure, you have received a diagnosis of breast cancer without having had all the accompanying tests and questions.
Here's what you need to do, relatively early after the diagnosis, but not necessarily immediately:
- Get yourself a large binder and/or a day planner or PDA (personal data assistant, I think - like a PALM PILOT, which I can't do without!) or a small tape recorder.
- Get (DEMAND, if necessary) copies of all instructions (in writing), all tests, procedures, etc.
- Write all future appointments down.
- Note name, address, phone #, practice name and type of doctor for any medical personnel who become involved with your case, in any role.
- Decide WHO you will tell about the diagnosis and HOW.
- Choose one person to be your "buddy" for all appointments - This person will be your second set of ears for all information. You may think you are under control, but you will either forget or misunderstand some of the medical jargon you hear. (For me, I knew my husband was a basket case about my diagnosis. I chose a good friend to accompany me to all "informational" appointments.)
It is a personal matter who in your life you share this with, but remember: it will come out somehow anyway. There is no right or wrong way to deal with this. I personally did some research first, then shared it with my husband and then chose to tell my 3 children and my parents all at the same time. A lot of this will be based on your mental fortitude at this point, the reactions that you feel your family will have and the age of the children, if any. (If you have young children, I suggest gathering some information about sharing a cancer diagnosis with children before you plow into the situation). Some helpful resources are listed below.
The extended family, friends, co-workers, neighbors and associates will have to be told something. They need not be informed right away, but most survivors I know have found it better to be upfront with almost everyone. They WILL notice if you lose your hair; your unexplained absences from sporting events/work, and so on will be commented on. If they are not told what is going on, you may be surprised to find out that the rumor mill has you:
a)carrying on a wild affair with the milkman
b)contracting Ebola on an unmentioned trip to the African desert
c)clinically depressed since your youngest son has turned out to be a radical, hippie-like, atheistic cross-dresser.
Get the picture? The truth is usually better than the fictional version. Note: It is generally good to inform your child(s) teachers or guidance counselor, if they are in middle school, high school or college. If your child is old enough, you may wish to discuss this decision with him/her first, but it's good to keep the educators informed, in case your child acts up, starts missing homeworks, etc.
OK, so now you have shared your information with your family, formulated a plan for how much of your personal history will be given to friends, neighbors, co-workers. You've gotten your binders and books to carry your data and you are almost ready for your first medical appointment.
Next, you need to do some research on your own. This can be in a book, borrowed from the library or one that you purchased at Barnes and Noble, online in your PJs at 3AM or through talking to a breast cancer hotline volunteer or talking to someone who is a survivor, or cancer social worker, at the local hospital or breast center.
Try to digest what information you can. Write notes. Write questions. Jot down words you don't understand. Finally, make a list of questions to ask your doctor or medical technician. Don't be shy - it's your body, your life, your diagnosis - ask away!!! You might also want to get the scoop from the "breast cancer buddies", who can be the online ladies who can answer most questions about how cancer affected them personally, or the hotline volunteers or someone from your area who has "been there, done that".
I always wanted to know what the test/procedure was supposed to accomplish and how long it takes and exactly how it happens. I found through my breast cancer journey that doctors write prescriptions for tests, but never tell you what is involved. I want to know if it is painful, or lengthy, or involves drinking nasty fluids, etc.
If you are the type who doesn't want to know any details, that is your right also. (At first, I was going to assume that if you are taking this course, you are feisty and "into" do-it-yourself activities. Then I realized that husbands, family, friends might elect to enroll in hopes of understanding the woman they love who is going through this.) So please, if you or the woman in your life does not want to know all the details, that is A-OK also. Whatever works for you is the best route to go. You can always change your mind later.
I heard my diagnosis over the phone (my own fault, another story). I cried silently and just shook. My 18 year old son and his friend were at home. They knew something bad was going on and they just hugged me. Then, feeling helpless or panicky, they left. I cried for about another hour. Then I got online and never looked back. I was going to fight this disease. I was going to win. And I wanted a crash course in Breast Cancer 101 within minutes. I spent hours online, searching for info and desperately trying to find breast cancer survivors to talk to.
