Just diagnosed with breast cancer. Not sure what to say or expect
Not sure what to expect. I was told I would have surgery, than radiation after chemo. Not sure what to expect. Any ideas or information to help me navigate through this process?
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Very helpful response. I am also just starting out and this is very enlightening.
Currently waiting on surgical pathology report to understand what they actually found.
Thank you
To anyone recently diagnosed and going into get results - I recommend making a notebook for questions and answers also take someone with you to appointments and share your questions with that person so they hear what is said. I found there were certain points in the doctors response I might have zoned out and not heard everything - it was helpful to have a second set of ears to hear responses.
I took that book of questions and answers to every appointment even for my initial treatment for chemo and radiation so I could ask questions and record those answers and so I could document what my treatment was. Those questions and answers allowed me to research further if I felt the need and to be able to ask questions if I wanted to question why one treatment over another was recommended.
I was extremely fortunate - after my dx - TNBC BRCA2+ (triple negative) I researched to determine potential treatments and side effects. My side effects from neo adjunct chemo (chemo before surgery); then surgery (bilateral mastectomy) then radiation were all very minimal. I'm getting ready for my first 6 mo checkup post treatment and I feel good.
Be your own advocate - don't be afraid to ask questions or for clarification on answers if you need. There are some people that want tons of information and there are others that don't question the prescribed recommended treatment - determine where you fall in the range of information you need to know. Everyone is different so there is no right or wrong to handle this journey. Find you path - but don't be afraid to use this board to ask questions or just to vent to people that understand how tough this journey can be.
I asked for a few Ativan during that first waiting period. I didn't use them much but I knew they were there. Walking and Netflix helped.
I just found out yesterday that I have breast cancer. They called and spoke with me but I feel like all I kept hearing is that I have cancer. They’re setting me up with a surgeon within the next few days and then will discuss more in depth what my treatment plan will look like, any guidance that anyone has would be greatly appreciated. I would love to say that I am brave and all that, but the truth is that I am scared so any help would be so appreciated
@elmore71111 It is a shock and there is a lot of waiting at first. Many of us are doing fine (I am almost 9 years out). Did they do any pathology on your biopsy specimen?
There are certain characteristics of tumors that determine treatment suggestions, though of course you always have a choice. If your cancer is ER+ and HER2- an Oncotype test will be done that tells you whether you could benefit from chemo. Some of us, even with high grade tumors, don't do chemo but do hormonal meds.
Keep posting as you go along. This is the hardest part. Once you have a plan, you just do it! And get second opinions if you need them.
In all honesty they may have reviewed that information and my mind was just hyper fixated on being told that my results were indeed cancer. I am making a list of questions to discuss with the surgeon when I go in for a meeting, thank you so much!
As most of are going through this journey together. Ask questions. My cancer was estrogen positive and her2 negative. Tumor was 3:8 cm. Because of my her negative and oncotype was 20 percent I didn’t need chemo. Just hormone therapy. ( anastrozole) not to bad side effects. I am 58 and 2 years of taking anastrozole. Doing just fine. Keep your head and keep telling yourself you will be fine. In todays world they’re a lot of treatment plans. Hugs to all we are in this together here our roar !!! Back off cancer 😡
@elmore7111 do you have a patient portal where you can look test results up?
This is actually really really common, this is why they used to call you in and tell you in person, that was really telling and you could at least think about it before your conversation with the surgeon.
I remember reading a paper saying that when the doctor says the word cancer, it is the last word of the conversation you hear.
Kind of sad we all find out on the phone or the computer.
Do you have someone who can go with you to your appointment and be an extra set of ears?
First, take a deep breath! You are getting all kinds of information here, a lot of which may be irrelevant to your situation. There are so many different types of breast cancer, different stages, and different treatments. I personally wouldn't get too obssessed with what to expect until you have talked to your surgeon or oncologist and find out exactly what they have to say. Every single case is different. Surgery and the subsequent pathology will make everything much more clear. The advice I would give you at this stage is to pick an oncolgist you feel comfortable with, who really listens, who you trust. Don't be afraid to speak up, question, assert yourself. Nurses can be your best friend, so don't be afraid to use them. Take one day at a time. Try not to worry as it never changes anything; you just deal with everything if and when it happens. And the number one thing to remember is that the every choice is yours and yours alone. And Mayo Connect is a great resource; I wish I had found it sooner before I completed treatment. Like you, I had surgery, then chemo and finally radiation. My surgeon was amazing, and explained everything thoroughly as he was my first contact. In four years I have gone through four oncologists. The first one I left because of her dysfunctional staff. The second was dismissive of my ideas and concerns and treated me more like a number than a person. The third left me and moved halfway across the country (I don't think it was personal). Number four unfortunately is 50 miles away, but I like her so much and I'm down to 2 visits a year, so not so bad. Good luck.