Topic: New Here: ?s to ask surgeon at 1st appointment

Dec 5, 2018 10:15AM - edited Dec 5, 2018 10:17AM by claireinaz

Hi there, better,

So sorry you have to join us and our club no one wants to be a member of...but you will find so much information and guidance here and (at least for me) it made my journey much less frightening than it might have been without this website and discussion forum.

One thing I'd ask your surgeon is if you have been dx with dense breasts which can hide masses. ILC hides from regular scans like mammograms, and also has a tendency to be multi-focal (found or develops in both breasts over time). I had dense breasts, but had 5 clear mammos that didn't report the problem because the problem hid in my dense tissue and from scans because it was ILC and often doesn't grow in a mass that is easily detectable.

I made the decision to get a BMX because I didn't trust any scan after the false negatives, and because of my dense breast tissue and that it was ILC. After the surgery the "good" breast showed ILC hyperplasia, meaning it could have turned dangerous later. So I was glad I had the BMX in addition to lumpectomy, chemo and radiation.

Surgery means you have to give to get potential protection. You do lose sensation in your breasts, and I sometimes feel sad about that. But for me a bit of sadness was better than constant worry about what might get missed again in the future. I had reconstruction, and am pretty happy with the cosmetic results.

Others I know will weigh in with more advice. Once you get your entire status (lymph node status, grade, stage, size, hormone receptor status etc.) add it to your signature line so we can tailor our help to your situation. It helps us help you.

Meanwhile, believe that you will get fierce, kick cancer in its *ass, and get on with your long life because you will. (PS I deleted the following post because for some reason it double-posted my response).

Hugs,

Claire in AZ

Dec 5, 2018 12:59PM betterdazeahead wrote:

Hi Claire!

Thank you very much for your response. I hae extremely dense breasts which was why my doc ran an MRI. So far it is only in my left breast.

Forgive me for asking but I am new and don't know all the terms yet....what does BMX mean?

Dec 5, 2018 08:16PM Dani444 wrote:

Link to questions

https://www.mybreastcancercoach.org/en-US/

Those are hopefully:) links to some information that helped me with what I should ask at that first appointment. You will get so much information in that first meeting. I got a full picture of my pathology from my biopsy at this appointment including hormone receptor status and HER2 status. But due to the nature of ILC it took us a while to decide on surgery choice, as they were having a hard time determining the exact size. It really does start to get easier after you start getting more information from all of your team and forming a plan.

This forum has been a lifeline for me at times. The support and advice I have gotten on here has been tremendous. Glad to see that you have a nurse navigator, I swear mine was an angel from heaven. Ask as many questions here that you need to or just pop in to vent if needed. Take care

Dec 8, 2018 08:11AM beach2beach wrote:

So sorry you had to join us but welcome. Glad you are keeping busy,,sometimes spending too much time on the computer with Dr.Google is not such a good idea lol.

It's true once you get all the information, hormonal factors, size, etc, you can set a plan in place and feel at least you are back in the drivers seat. It's not easy but you will do it. So glad your son is well now!! Now the caregiving you have to do is for yourself.

So you would want to know the size of the area/tumor. The grade and hormonal factors ie; ER+ or - , PR + or - and HER2 + or neg-. These may not be available at the time you go to your appt. Every place is different. What he/she thinks you can do lumpectomy/mastectomy, lumpectomy comes with radiation, mastectomy whether you decide to do one or both, benefits vs risks. Will they do the Oncotype test after to determine if chemo is favored or not.

My surgeon left it in my hands if I wanted to do a lumpectomy or mastectomy. She never tried to sway me either way. Myolder sis had breast cancer 9 years prior to me so I pretty much had it in my mind that if it ever happened to me I would do a mastectomy. I had dense breasts and always had issues with benign things going on. I opted for a double, and went direct to implants. At the time of diagnosis, all I could think of was that I wanted it out of me and wanted to be around to see my kids graduate, have families of their own etc. So I felt my choice worked best for me. I eliminated some anxiety for myself by doing both. I did not want to be going every 6mths (which is what my surgeon said I would have to do) for increased surveillance if I did a lumpectomy.

I'm sure others will chime in on what else to ask.

It's very overwhelming as you well know from having to go through similar circumstances with your child. That shows how strong you are, and you will be that way for yourself too.

Keep busy this weekend and no Dr. google...!

Dec 8, 2018 09:10PM jessie123 wrote:

I'm exactly where you are --- had biopsy - diagnosed lobular - but no other information available. Went to a different facility to see a surgeon. I know people say not to read google, but I did constantly . I had to understand my cancer because I knew once things got started I would have to make many decisions. So I would advise you to google and keep a notebook near to write questions. I also read this board constantly and asked questions. If I hadn't studied so much I wouldn't have understood a thing the surgeon said at the end of our meeting. I also typed up everything -- such as why I was there, my symptoms and my questions. When I try to talk to a doctor I always feel rushed and don't want to ramble on --- then I forget to tell her/him things or forget some of my questions. Putting it into writing for her to read before she sees you is so much easier --- my surgeon even said it was easier. The tests she has scheduled for me before I see her again to discuss treatment is 1. blood work 2. Breast MRI 3. second core needle biopsy 4. bone scan. I wondered about the bone scan, but now understand that she is verifying no metastasis before she decides on treatment --- my lump is small 1.3 cm. That's all I know for now. Good luck -- looks like we'll be going through this at the same time.

Dec 9, 2018 09:05AM betterdazeahead wrote:

jessie123 - we will have to keep each other posted on everything. I have 3 masses all are small but on the report says 7.7cm of diseased area. I am worried about if it has spread since reading about the areas that invasion was present. Tomorrow 8am is my appointment.....I think I have most everything in order.

spookiesmom - my DH is coming along. I like the idea of asking to record the visit so we have it to listen back to, thanks for the tip!

Dec 9, 2018 12:14PM betterdazeahead wrote:

hi MoonGirlJess!

Thank you for replying!! How is your daughter handling all of what is happening with you?

We are a pretty open family when it comes to health issues. My 15 almost 16 YO is alright but can tell she is more worried then my 12 YO son. He has spent his entire life with his own health issues so nothing seems to phase him....he is a lover and super helpful to me.

I hate that we are both here but find it helpful we are the same age going through this given what I keep reading is we are young for this diagnosis. May I ask how you decided to wait on the mastectomy for your other breast? Also did they know you had tumors in your nodes before they went in or did they find them then?

Dec 17, 2018 07:52AM claireinaz wrote:

I found it helpful to reassure my adult daughter that I was going to be okay, that I had a skilled MO and surgeon, and that I was going to do all the treatment necessary to kick cancer's *ss, so to speak. I found encouraging and credible stats and shared them with her since when most hear the word "cancer" for the first time they immediately think death sentence, which was far from the truth. It helped her a lot.

Claire in AZ