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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You’re truly right on point. You need to completely be comfortable with the team of doctors you chose. We are patients and not numbers. It’s hard enough hearing the words of you have breast cancer.

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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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Hi Sarah!
Did you have any side effects of hormone therapy so far? Thank you!

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Great advice from here. Also go to cancer.net
That site has a great list of questions to ask your doctors—it leaves nothing out. Your docs will probably go over everything with you during your appointment about your treatment plan but with these ?’s you can be sure it’s all covered as it’s a highly emotional time and we all get overwhelmed. There is also a lot of good info on the cite.

Best wishes, I’m 5 months out from surgery, radiation, on anastrozole, and doing well.

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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
You don’t have to be brave- it’s scary.
My surgeon told me - Congratulations! You have breast cancer- we can treat that!
I’m 31 years out.

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@astaingegerdm

@elmore71111
You don’t have to be brave- it’s scary.
My surgeon told me - Congratulations! You have breast cancer- we can treat that!
I’m 31 years out.

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That is so encouraging. I go in the morning to meet with a surgeon to discuss my treatment plan a little further… this has been so overwhelming. Everyday they’re setting me up with a new specialist!

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@elmore71111

That is so encouraging. I go in the morning to meet with a surgeon to discuss my treatment plan a little further… this has been so overwhelming. Everyday they’re setting me up with a new specialist!

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That’s a good thing to be able to see several specialists. Others have already advices you to take notes, ask questions and bring someone with you.
I have seen so many specialists this year for cardiology, pulmonary, oncology and ophthalmology. Someone has come along to most new visits. I agree- it’s overwhelming. I try to deal with one thing at a time instead of piling it up in a big pile causing panic.
Remember- our group is always here!

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@astaingegerdm

That’s a good thing to be able to see several specialists. Others have already advices you to take notes, ask questions and bring someone with you.
I have seen so many specialists this year for cardiology, pulmonary, oncology and ophthalmology. Someone has come along to most new visits. I agree- it’s overwhelming. I try to deal with one thing at a time instead of piling it up in a big pile causing panic.
Remember- our group is always here!

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Thank you so very much!!!

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@pgsuer

Hi Sarah!
Did you have any side effects of hormone therapy so far? Thank you!

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Hi! I’m sorry, for the late reply, I just saw this. I started on anastrozole, which was great until two months in, when I developed trigger finger (both thumbs started locking in a bent position). Took a break, it went away, started letrozole, it came back. Then tried tamoxifen, which caused terrible anxiety and depression. Finally went to exemestane, and hooray! No trigger finger (or anxiety)! I do feel ancient and creaky in the mornings, but it’s no big deal. So that’s what works for me, but I know some other women have totally opposite or different reactions to these meds. If one isn’t working for you, don’t hesitate to try another. Take care!

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@missi66, you have received many helpful replies that I hope give you hope and strength to navigate this unexpected journey. Have you learned more about the type of breast cancer you have? When will you have surgery?

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@canslead

They told me Wednesday and haven't even seen me yet. No clue what is going on.
I wish I knew anything.

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@canslead, that's a terrible piece of news to get without being seen. Have you learned more since hearing that you have breast cancer? Have you talked with your doctor and have a treatment plan?

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