Just diagnosed with breast cancer. Not sure what to say or expect

Posted by missi66 @missi66, Sep 15, 2023

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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@sarahmh

Hi! Welcome to a community of wonderful women brought together by less than wonderful circumstances 🙃
I love your picture! You look like a vivacious, fun lady. Did you fly that tiny plane (glider?!)
So, breast cancer. It sucks. Someone else said getting the news is the hardest part, and it was for me! The news was a huge shock, and I cried alone in parking garages after appointments a few times, because I didn’t want anyone else to feel the sadness and fear. I realize that’s probably not the best or healthiest thing to do. It’s clearly not something I could keep secret for long, and telling my kids (ages 8 and 11) and my mom and brothers was the hardest thing I’ve ever done.
I had the same order of things as you might have; surgery, chemo, radiation. Now I’m 1.5 years into ten years of endocrine/hormone therapy (trying to get rid of estrogen that my cancer used to grow, in order to reduce my risk of recurrence).
***Your treatment plan will depend on a lot of different factors. I previously thought that breast cancer was one beast, and that you tried to slay it with one sword. Turns out there are many types/variations of breast cancer, with many weapons used against them!***
You will probably learn a whole new language. My cancer was Stage 2A, IDC and DCIS, ER/PR+, HER2-, grade 3, Oncotype DX 20, one lymph node positive, high KI-67%…TBH, I enjoyed (? sounds weird) leaning as much as I could about this stuff. A note about staging; there is clinical staging and pathological staging. Based on my initial imaging and biopsy, I was thought to be Stage 1 (clinical dx); after my lumpectomy and sentinel lymph node biopsy, I was upgraded (ha) to Stage 2A (pathological dx, based on tumor size, grade, and lymph node involvement, things impossible to know with certainty before surgery). That change in stage was a huge blow to me! I guess I didn’t realize it might be worse than originally thought.
There will be so many appointments in the beginning; after my routine mammogram and callback mammo, ultrasound, and biopsy, I got the news, then an appointment with the breast surgeon, an MRI, back to the breast surgeon, Magseed placement, genetic testing…I’ll have to look back in my calendar to see what else!
After healing up from surgery (lumpectomy and sentinel lymph node biopsy), I started chemo (4 treatments of taxotere/cytoxan, one every three weeks). Then onto radiation; 33 treatments, every day Monday through Friday. Now the hormone therapy. There’s a lot more in there; for chemo, there’s meeting with the oncologist, port placement, blood testing, injections to boost white blood cell count, check-ins with the onc…For radiation, there’s meeting with the rad doc, rad “simulation” and getting a body mold made, tattoos (!), check-ins with rad doc…It’s a lot.
Now, two years post-diagnosis, I can’t believe how fast it all went! Yes, it’s terrifying and you don’t know what the heck to expect, but like someone said, you just follow the plan, one step at a time, and then you’re out on the other side of it.
Everybody, I’m so sorry to be so long-winded! Missi66, keep us posted! There are lots of great threads here that have been super helpful to me.
Best to everyone 😘

Sarah

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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

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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.

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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.

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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

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@elmore71111

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

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@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.

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@windyshores

@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.

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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!

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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 😡

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@elmore71111

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!

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@elmore7111 do you have a patient portal where you can look test results up?

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@elmore71111

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!

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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?

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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.

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