Feeling overwhelmed--this is big stuff

JLBinPDX

I'm vacillating between being thrilled I found this forum and overwhelmed by the little I know and the many, many acronyms that I don't understand. Right out of the blue I went from feeling a lump to five trips to the hospital in less than two weeks to lumpectomy surgery and another biopsy on the other side in a few days. What I'm struggling with in this forum are the acronyms. Feels like everyone knows so much more than do I and I don't understand all of the terms people use. Any acronym chart somewhere?

I apparently have triple negative malignant neoplasm on the left (is this referred to as HCC?), HER2 neg, 1.8 to 1.9 cm, with some stupid high proliferation rate. What am I supposed to say I have? Everyone seems to have an acronym and short, to-the-point description that everyone else understands, except me. Then, just so the right doesn't feel left out, it has atypical ductal hyperplasia and flat epithelial atypical with microcalcifactions. I'll be heading into surgery next Monday (just two weeks after this all started) with a lumpectomy (better term than "partial breast removal," if you ask me), the happy little dye into the lymph nodes (yes, I know that has an acronym as well), and a biopsy on the right.

Just wanting to understand more. I'm just starting the research as I couldn't bear to Google anything for a week or so. I'm also worried about some women's experience about the wires (don't understand that component either, yet) as some seem to be "excruciating" as I just read and others think it's not that big of a deal. I'm trying to fall on the not that big of a deal, but don't understand why there are such vastly different experiences.

Yes, I'm a little all over the place. That's how it is for now.

Luckynumber47

https://community.breastcancer.org/forum/131/topics/773727 Is the link for the abbreviations

Wow, so sorry you find yourself here. I totally understand how overwhelming it seems. Trust me, thing get easier once you figure out what's going on and have your treatment plan in place.

As a big fat guess from what you posted I'd say you are stage one, ER/PRnegative and Her2 negative, grade 3. That could change after surgery when you have more info.

I didn't have wires because I opted for BMX (bilateral mastectomy - both breasts) but I have learned to stand up for myself and never let anyone do anything that could hurt me - ask the docs to give you whatever it takes to avoid pain.

There's a forum for triple negative ladies. Start reading there. Also, read the pages for April surgeries to learn what you need to prepare.

Wishing you best of luck. You will get through this

Luckynumber47

I'd also like to mention a few things you probably already know. Your breast surgeon (BS) will work hard to get all of the tumor out at once but sometimes it's hard to see the edges - the margins. If you don't have clear margins you will have to have a second surgery called a reexcision.

Lumpectomies and radiation go hand in hand, so you need to expect that. There are several kinds and your RO (radiation oncologist) will discuss the merits of each with you.

The final hurdle is chemo. What kinds, over how many weeks? Your MO (medical oncologist) will discuss that, as well as side effects with you.

My surgeon recommended guided visualization. I downloaded some tapes from the library and it made a huge difference to my peace of mind. I also wished I'd been offered a prescription for anti anxiety meds. So hard to get through the time between diagnosis and surgery. After that you'll be on the road to recovery, both mentally and physically.

Hugs, Lucky

Smurfette26

Sorry you have found yourself here. It's overwhelming for everyone in the beginning. It may not feel like it now; but it does get easier. And you will pick up the jargon as you go along. You will find the best info online here and the support is amazing. Stay away from Google. As Lucky said radiation goes with lumpectomy. And being Triple Negative chemo will be in your future. Wishing you the very best. Hugs.

Moderators

Hi JLBinPDX. Sorry you find yourself here, but glad you've found us and decided to post!

We know it's scary and confusing right now, just know that you are not alone! Besides the helpful responses from Luckynumber and Smurfette, we thought you would find the following section from our main site of help too. It's called Breastcancer 101, and has been designed for those newly diagnosed to help you understand next steps, test results, the individual characteristics of the cancer, treatments that are recommended for you, and more.

Wishing you the best! Please come back and let us know how you're doing.

The Mods

Wildplaces

The wires - I assuming you are referring to having the breast lump localised in radiology prior to the lumpectomy?

A couple of factors come into play:

- your level of anxiety on the day (assume it will high)

- how palpable your lesion is or how easily spotted on ultrasound (one hopes that anything over 1cm should be easily found)

- whether the centre offers you something for pain and anxiety prior to the procedure (many in Australia do NOT so I am hoping US do it better 😊)

- how skilfully the local anaesthetic (again assuming it is used ) takes before the wire is placed under imaging

- ohhh and you are uncovered for the procedure and the room can be cold

Having said ALL that - if you SPEAK UP if you are in pain/cold ( radiology stuff seem to focus on images a lot so you do have to let them know you are still there kind of thing - I am joking 😊😱) it will be fixed by them and very very manageable. Hope this helps...

You'll pick up most of the terms quickly - and to be frank for me I found that "forcing" my surgeon and oncologist to use very simple terms has got them to think more about what they were saying - they can't hide behind the big words.

JLBinPDX

I almost cried when I first saw how many hundreds and hundreds of women here are going through, or have gone through, what I'm going through. BC (see, I'm already getting these acronyms down) seems to be an epidemic and touching nearly every family in some challenging way. And then my eyes did water up toes responses that were helpful, kind, caring, and intelligent and educated. I need those things. Thank you, thank you.

MTwoman

JLBinPDX,

I think most of us understand the feeling of "Everyone seems to have an acronym and short, to-the-point description that everyone else understands, except me". You are not alone here. You do not have to pretend to be brave (until you are) you do not have to pretend to be happy (unless you are) and you don't have to pretend to understand anything that is confusing. The acronyms will come; but I'd wager that is more of a symbol of where you are than the actual issue. The early stages are really the hardest. The learning curve is steep and intimidating; but we all did it and you can too. While the information is compiled on size, grade, characteristics etc., everything can seem like such a blur. Once the info is in, and you have your team in place (a team that you trust and who works well with YOU) you can start to make decisions and feel more engaged and powerful. That is when a shift occurs for many of us. You've come to the right place for information, experience, wisdom and support. Sending you white light and ((Hugs))

AnotherMichelle

In so many ways, this is the hardest time. I am so glad that you are getting lots of quick reponses and treatment rather than waiting, waiting, which happens for a lot of people. I was also FREAKED OUT about the wires (and I had already had 20 weeks of chemo before surgery), but I had very little pain, and I have a low pain tolerance. Every single person is different. That's one of the hard things, too: We share the acronyms and the stories and the stages and the treatments, but every person's cancer is different.

Ask questions when you have them. Everyone on the boards is here to help if we can.

mustlovepoodles

My wire placement was not excruciating. It was uncomfortable and the lidocaine/numbing injection wasn't too much fun--it stung a lot, but was bearable.

JLBinPDX

You women are amazing. Really, truly, amazing. I'm determined to turn this around into something positive and it's already starting. I'm being open to new, caring people in my life (not always something easy for me) and this forum is a part of that as well. Thank you.

anotherNYCGirl

Hi JL,

https://community.breastcancer.org/forum/72/topics...

come join us on that board, too, - it is a triple neg board.

These message boards have been such a huge support for me. You will find some wonderful advice and friendship here!