New Diagnosis. Looking bounce some thoughts off of you all

I've never sought a second opinion. I'm comfortable with my medical team, and had done enough research that I knew what treatment would be recommended for me.

Radiation is often either 33 sessions, or 20 ("Canadian protocol"), which is a higher dosage per session so you get the same total radiation either way. I had 20 on my left side, but was told that after chemo, the longer, gentler version is recommended because the skin is a little more sensitive. The appointments are five days a week but go very quickly (really--like 10 minutes in and out). Many women schedule them early in the morning or late afternoon. I live close to my treatment facility so usually went at lunch time, and didn't take any medical leave at all. *If* your genetic testing comes out positive, you'll probably get alternating mammos and MRIs every six months. If not, you'll only get annual mammos. Re: radiation SEs, mine were never bad. I had a few instances of fatigue each time (literally--maybe 2-3), which mostly hit the day after I'd had a really big day (we were getting our house/property ready to host a wedding while I was going through it in 2016). Many women handle rads without much disruption to daily life.

There are lots of threads re: Tamoxifen or an aromatase inhibitor. You will only be recommended to take one if your tumor is estrogen receptor positive. I won't say there are zero SEs, but many women find them tolerable, particularly with exercise. They can be an important part of a treatment plan (in my case, more important in preventing recurrence than chemo was).

Most important is to do your due diligence (which you're doing!), make a decision, and then don't look back.

Hello,

I was dx with LCIS. I also had a family history. I did complete genetic testing with negative results. I thought I was doing a lumpectomy, but then had an MRI for a better view. It was found that the lump was much larger than they thought it was. I had small breasts and the team did not feel comfortable doing a lumpectomy as it would leave me deformed. The MRI also picked up another lump on that side and two more on the other that were not detected on the mammogram. I decided on a bilateral mastectomy. My BS wanted me actually forced me to have another opinion. So I did. It did not go well. I knew in my gut that I should have a bilateral mastectomy. The new doctor assumed, never asked what I wanted, that I wanted a lumpectomy and made it seem like no big deal. I was very unhappy with this interaction and stuck with my gut.

You will know the right decision for you. Best of luck! Hang in there.

Todd24, you may want to delete your name. These boards are searchable in search engines. Anyone who googles your name will find your posts here

MinusTwo, just to say that HER2 status does not change the DCIS treatment plan - so even if your HER2 had been tested when you had the BMX for DCIS and you were found to be HER2, you still would have been offered no treatment after the BMX.

A couple of interesting facts about DCIS and HER2. First is that about 40% of DCIS diagnoses are HER2+ whereas only about 20% of invasive cancers are HER2+. So DCIS is much more likely to be found to be HER2+. Second is that the research is all over the map on whether HER2 status means anything for DCIS. There have been quite a few small studies and most show no difference in rate of progression to IDC or recurrence rate for HER2+ DCIS vs. HER2- DCIS. There have been a couple of studies that have found that HER2+ DCIS is more aggressive and more likely to develop into invasive cancer. But there have also been a couple of studies that have found the exact opposite, that HER2+ DCIS is actually less likely to develop into invasive cancer. And this is why HER2 testing is not often done on DCIS. There is no difference in the treatment plan, and there is no understanding of what, if anything, HER2 status means for DCIS. Of course this might change in the future as more studies are done and more information comes in, but I've been saying that for 14 years and so far nothing has changed - it remains confusing (why is more DCIS than IDC HER2+ ?) and unclear (what does HER2 status mean for DCIS?).

All that to say, Mimi, don't be surprised if you don't receive HER2 results. And if you do get HER2 results, they won't change the treatment plan.

1) Second opinion: I didn't get a second opinion, but from what I've read and experienced, there can be some variability in diagnosis and treatment options. If you've had some scans already, your second opinion can just be having another radiologist review the scans, confirming whether they think it's DCIS, the size, the recommended treatment.

2) Lumpectomy vs. mastectomy: I think you are considering all the right things: your risk - what you can deal with now - what you want to deal with in the future - and also about where you want to end up in a year or ten years from now.

Advice from my experience -
I would ask the doctor what your potential paths might look like. I was told my options were lumpectomy or mastectomy. I picked lumpectomy.

For some people that works out, but my path ended up being: lumpectomy > re-excision > mastectomy. I'm a somewhat unique case (Paget's/42 at diagnosis), so don't go by me - but I wish I'd had a more complete picture up front. Some doctors might be reluctant to share this info, because they don't know (some things you just don't know until the surgery and pathology stage), and don't want to unnecessarily worry people, but I know my husband was irked we weren't told some things (like multiple surgeries) were a possibility.

Re-excisions appear to be somewhat common - I've read anywhere from 25-50% - so ask your doctor if they have an estimate on whether you'd need a second surgery/re-excision. It's not a big deal, but if you're taking time off work, etc. - it's good to know, be prepared, and have a plan.

I also didn't realize how high* my risk of recurrence would be after mastectomy. *[Edited to add that I recently met with my BS again and she estimated my recurrence risk as being very low; I remember my oncologist telling me a different stat, but maybe I misunderstood.] Again, an individual situation, but I think it's always good to have as much info as you can, and know what to keep a look out for going forward. Some of this (like % risk recurrence) they might not know until after surgery, when you get the grade, type, etc. I only share because it turns out mastectomy wasn't a 100% bulletproof solution, although it's a good one. (*knock on wood* doing great so far).

Because I ended up needing the mastectomy, they didn't do radiation after all. Personally, I was kind of relieved - but I don't think it's as bad in reality as it was in my head. A lot of this stuff is a pain at the time, but you get past it. My DCIS was effectively hormone negative (very low %), so I did not get Tamoxifen either.

I only had one breast removed, so I still get mammos and MRIs on the remaining one, and chest wall. This sounded like a good plan to me, so I went with it.

Everyone's path is different: you just figure out what you want (because both options are good options), go with what you know at the time, trust your gut, and keep on moving forward.