Redcanoe -

I wanted to echo what someone else said about choosing mastectomy vs. lumpectomy. It's SUCH a personal decision - and there is no right or wrong answer. Your doctor will let you know after all tests are done if you are a good candidate for lumpectomy. I encourage you to do your research about all options - and talk to other women who made all different choices. That was so helpful for me in my decision making process. Something will resonate with you and you'll know what's right for you. I opted for double mastectomy with no reconstruction. I only had cancer in one breast, but it was pretty aggressive - and I wanted the peace of mind knowing that I had removed as much breast tissue as I could. In researching all the recon options, I knew right away that I didn't want implants, due to the possibility of breast implant illness, and the fact that implants have to be replaced every 10 years or so. I thought I would do a DIEP flap initially, but once I understood the process and the multiple surgeries involved, I decided that was not for me. Again - everyone is different and this decision is VERY personal. I was a candidate for lumpectomy because I had an over 99% response to chemo, but I just knew I would be less worried if I did a mastectomy. I'm very happy with my decision.

Ask lots of questions in this group - everyone is so helpful!

Kris

I have a question about staging for triple positive: How did you all get staged?

My MO basically said "we don't even bother with stages anymore since there are so many permutations", but the studies all seem to be based on staging. For example, I am on Kadcyla, and the KATHERINE trial data is all broken down by stages, but it doesn't seem to say anywhere what staging system they used. And I see many people on here were giving staging info, and some even got restaged after chemo. I don't even really know what size my initial tumor was, because there was so much discrepancy between the ultrasound/mammogram and the MRI< but the MRI was after biopsy and I had a lot of bruising (my surgeon thinks it overestimated size because I had such a big hematoma there)

I mean, I keep trying to tell myself it doesn't matter, because either it comes back or it doesn't.... but I do keep wondering!

Hey Noelle,

I was doing some research and looking in the brain Mets forums and someone mentioned that the same thing happened to them and it was vertigo. You may want to check those forums out

Staging was done by BS for me. The post surgery lump by pathology showed 12 consecutive sections of 0.4cm and so 4.8 cm and with one node showing metasis I was staged pT2N1 as Stage II per the guidelines T2 is for 2-5 cm and 1 axillary node positive. I asked about A and B but she seemed to indicate just Stage II is fine and there is no need to go into it - the treatment stays same maybe?

for all with staging questions - keep in mind that the studies for most of the drugs early stagers now receive are based on original studies for stage IV patients, that then are looked at for early stage patients, but that these studies are often older information because of the length of time involved with studies and follow up. While we will soon see COVID vaccines with very fast trial times, most drugs go through a lengthy FDA approval process. It is an 11 year average for first approval, with some drugs used in original populations having a shorter approval process for use in other populations, i.e. the same drug used for advanced stage to use for early stage. For example, Perjeta was first approved for metastatic patients in 2012 after five years of study - so initial study commenced in 2007 - for early stage neoadjuvent use only (6 infusions) in 2013, but now for both neo and adjuvent use in 2017. So much has changed with the order of treatment for triple positives with the advent of newer drugs that staging has become a slippery slope due to neoadjuvent treatment recommendations for those with tumors greater than 2cm, or those with smaller tumors but positive nodes. For those who image really well, and/or who know they have positive nodes proven by biopsy prior to neoadjuvent treatment, clinical staging is more clear. Those who are thought to be node negative with smaller tumors still have the option of surgery first, so staging is pathological, and systemic treatment then takes place with the possibility of single agent chemo and Herceptin only. The decisions hinge on treatment order, regimen choice, and additional adjuvent treatment options based on post-surgery pathology. For triple positives we know that we will receive chemo, with targeted therapies, and anti-hormonals pretty much regardless of staging info. Regimens, recommendation for radiation, and type of surgery seem to be the decisions points. For me, even though I had surgery first because I was treated prior to the approval of Perjeta and the advent of neoadjuvent treatment for larger or node positives, my clinical staging was not accurate. Tumor size was pretty close, but my positives nodes were a total surprise - never palpated despite larger size, and didn't show in the MRI at all even though the imaging size threshold was met.

noelle - I experienced dizziness as well, and of course my initial thought was brain mets. After a stat head CT it turned out to be SSHL - Sudden Sensorineural Hearing Loss, but I was actually kind of unaware of the hearing loss part initially. This is something that needs to be treated with speed to try to reverse the hearing loss, so if you feel any kind of diminished hearing - usually on one side only - see a doc pronto. I had episodes of dizziness, but they didn't last more than a couple of weeks so I didn't pursue getting it checked until I experienced what felt like water in my ear after a shower. I now wish I had had it checked earlier because I have one-sided deafness to human voice that did not respond to large doses of steroids and anti-viral meds. This is related to chicken pox and shingles, so it can happen to anyone.

Redcanoe - can relate to you. Yeah my tumor grew from test to test. Hope your nodes ar clear.. but wouldn't you still get chemo? Definitely it feels better when treatment starts!

No, the first two were ultrasounds.

noelle - glad you have some answers, but hoping the findings consistent with MS are not a player. It is important to remember that radiologists will often state all scenarios, including worst case, because it is their job to provide the impetus for further investigation.

For those who had differing measurements on differing imaging modalities, remember this is common and not necessarily reflective of growth - not saying it is not - but may be reflective of more sensitive imaging and a more accurate measurement of size. MRI is generally considered to be more accurate than either US or mammogram.

The lymph node biopsy came back negative! I'm having surgery on Tuesday and starting chemo AS SOON as I am recovered from surgery. My surgeon is very optimistic that between the MRI, ultrasounds and this biopsy that I am unlikely to need an axillary node dissection and will only have a sentinel node biopsy. I feel relieved today for the first time since this all started.

Great news, RedCanoe!

CandM - I don't believe I have seen anyone with skull mets post on this thread, but I did a "skull mets" word search on the site through the search function and here are the results:

https://community.breastcancer.org/posts/search?utf8=%E2%9C%93&search_builder%5Bkeyword%5D=skull+mets&search_builder%5Bauthor%5D=&search_builder%5Bsource%5D=&search_builder%5Bdate_range%5D=&commit=Search

I did see a few member names that currently post so you could look at their posts or send a private message to them. Wishing you the best - I have walked in your shoes and I know it is hard. Hang in there.

Hi, all, checking in for some group wisdom. I had a lumpectomy and SNB last week—nothing remained in nodes and a 3mm area of DCIS was all that remained at the original tumor site. My MO said this is usually considered a pCR, but that because of my age (37) she wants to check with a research colleague to see if this still constitutes a pCR or whether we should consider Kadcyla because I’m younger and should be treated aggressively. Does this jibe with what others have heard? How greatly increased is my risk of recurrence because of my age?

Also, she started talking about tamoxifen and I interrupted because her PA had told me I should do suppression and an AI. She said that is what she’d prefer, but that she’s not sure how much of a benefit there is in doing that for triple positive. I told her my thought was that I’d try suppression and AIs and if they are intolerable then thank goodness there’s tamoxifen and she agreed.

She also said she would like me to do a year of neratinib (Nerlynx), though she said that the benefit of it has mostly been shown in studies of people who only used Herceptin, not the HP combo that’s standard now. She just clearly wants to be sure we do all we can.

Does all this sound reasonable? I’m really worried about the AIs and suppression, but it sounds like tamoxifen isn’t a ton of fun either, so I might as well try to get the benefit of the harsher treatment for as long as I can stand it.

For what it’s worth, the original tumor was 90+% ER+ and 60% PR+.

Thanks in advance for your wisdom.

Hi AnnaTheBrave!

I've been doing AI + ovulation suppression for over 5 years. (I was 46 when diagnosed and still premenopausal.) Here are some side effects that I experienced:

* Changes in my hormonal balance have always made me moody; AI + OS was the same. My MO prescribed a low dose of Celexa and I've been fine, emotionally.

*AI + OS gave me full-blown osteoporosis; MO prescribed Prolia, and my bone density has improved.

* AI + OS gave me hot flashes, especially in the evening. However, the longer I've been on this regimen, the fewer hot flashes I've endured. Also, it helps to sleep with a ceiling fan on.

My cancer was 95% ER/95% PR.

Good luck!

Anna - there's a lot of controversy over how effective Nerlynx really is, especially considering the negative side effects that most women suffer while on it. That being said, I took it for a year and had very mild side effects. I would take it again. I suggest you go ahead and try it and see how you do. If it's negatively affecting your quality of life, you can always stop taking it. Even women who really struggled with side effects have returned to normal after stopping. We had this whole thread on it, which people still occasionally post on:

https://community.breastcancer.org/forum/80/topics/870980?page=1

I'm also doing OS + AI in lieu of tamoxifen. I had full blown osteoporosis at my baseline DEXA but my MO said my fracture risk was low enough to not take any biphosphonates for it so I decided to treat it by taking/eating more calcium and doing resistance training. My one year scan showed significant improvement in bone mineral density even though I did very little actual intervention. Go figure. I have no insight on your PCR question, unfortunately.

And since the 8-years result of the Extenet trial for Nerlynx (Neratinib) were just presented last week in San Antonio, I am going to post that here, too. The trial compared Neratinib vs placebo, and the graph below shows the comparison of survival in the subgroup of HR+, HER2+ patients with residual disease (i.e. no PCR) after neoadjuvant therapy that included Herceptin (but not Perjeta) and who started Neratinib less than 1y after finishing Herceptin, in the graph below "HR+/<1 year no PCR". Also very significant -the caveat being that the study had not been powered for this type of subgroup analysis, i.e. there is no guarantee that the two subgroups were equivalent/comparable.