TRIPLE POSITIVE GROUP

rljes - ((hugs)) I know how you feel. I am trying to limit my news consumption. I'm also limiting music (I listen constantly) to jazz and classical. These are things I did during treatment when my anxiety was really bad. It sucks that gyms are closed right now because that was also a good outlet, but I did get a trail run in yesterday evening. The trail was like a rush hour freeway though, tons of people had the same idea, mostly mountain bikers but some families with kids as well. I wish my work would quit having these meetings to talk about coronavirus and how it is and isn't affecting us. There is at least one a day. It's not helping.

All - I'm brand new to this site. Recommended by a friend who is on year 17 of survivorship! I was just diagnosed on Monday and am now trying to figure out what I want to do. I know with 100% certainty that I want a mastectomy. Several people I've spoken with who had the exact same diagnosis had surgery first and then chemo/targeted treatment - which is the way I'm leaning and makes the most sense to me. However my surgeon has said that "typically" with my diagnosis they recommend chemo and targeted treatment before, then surgery, then more treatment. This is making no sense to me, as his rationale for the chemo first is to "see" if the tumor shrinks and the lymph node clears. What I'm reading is that there is no guarantee that this would happen and it's just a "maybe" scenario. So I could end up having the chemo and then going into the surgery with the same scenario. My body is super healthy (with the exception of the obvious cancer!) so I feel like I could recover quickly from the surgery and THEN be better able to tolerate chemo. PLUS - and a big plus - the idea of pouring immunosupressing poison into my body with the COVID situation is pretty much at the bottom of my list of things to do. SO - I'm looking for info from people who opted for surgery first - and why. And also from people who went the chemo/targeted therapy route first and why - and how long before you had surgery and how did you do? I meet with the MO on Monday and have a Breast MRI on Wednesday, and then I'll start making some decisions. Thank you!

I did chemo before surgery, and I'm glad I did. Chemo got rid of all of my active cancer in both my breast and compromised lymph node. As a result, I was able to get a lumpectomy instead of a mastectomy which meant 1) a shorter recovery period; and 2) no reconstruction. (I have twins with severe autism, and needed to be back on my feet, pronto.) Yes, I was part of the lucky 20% who have pathological complete responses to chemo, but I'm glad to know that chemo did its job and that I responded well to it. Good luck, whatever you decide!

Thanks - I guess where I'm struggling is that I don't care about being a candidate for lumpectomy. So deciding if I'm already going to have the mastectomy, if it's worth it to do chemo before or just wait and hit it after the surgical removal.

I'm doing neoadjuvant treatment now. The original plan was to shrink/eradicate the DCIS/IDC so my surgeon could do a lumpectomy. I've since decided on a BMX (personal choice) but, I'm still hopeful for a PCR and, if not there's Kadcyla.

As others have said the good thing about neoadjuvant treatment is you know how well you respond to chemo+H/P.

I do understand how you feel, chemo was my biggest fear, surgery (even BMX) didn't phase me but, Chemo was my nightmare. I can say that TCHP isn't as awful as I feared, granted I'm tolerating it well but, the images in my head of throwing up, being too weak to move and emaciated is a far ways off from my current reality.

And yes, Chemo during COVID-19 is very scary but, this is our new normal for the next 2-3 months and, it could come back in the Fall so we may be living with COVID for the next 12-14 months (before a vaccine).

As it is, my surgery should happen in June but, given everything going on I may have to wait a bit longer. I'm hoping that's not the case as this isn't really an elective surgery but, I'll have to wait until we get closer to June and see how my state is doing (our peak is expected in 2-3 weeks)

Thank you - will you eventually have surgery? Have you already started the chemo? I see that you were just diagnosed a few weeks ago. How's it going?

Thank you - I'm guessing (I have not met with the MO yet) that they are recommending the chemo first because I have confirmed lymph node involvement. I appreciate your insight!

Thank you!

wahoomama - generally the dividing line for surgery first is tumors under 2cm and node negative. Tumors over 2cm - or those with smaller tumors but are node positive - usually receive chemo and targeted therapy first. The evolution of neoadjuvent chemo came in 2013 when Perjeta was introduced for use in early stage patients with 2cm tumors, and/or node positives. This additional targeted therapy, added to a taxane chemo plus Herceptin, was only FDA approved for neoadjuvent use at that time. This represented a shift away from surgery first for those who fit the criteria. The advantage of doing chemo first, as other have stated, is to determine the efficacy of the drugs, and to help determine whether other drugs need to be added after surgery if complete eradication has not occurred. Keep in mind that neoadjuvent chemo is not for the sole purpose of eliminating the breast tumor, it is to determine how effective these drugs are on your specific tumor, because chemo and targeted therapies are given with the goal of eliminating a metastatic spread to bones, organs, lungs, and the brain - these are systemic medicines, as are the anti-hormonal drugs given after surgery. Surgery and radiation are localized treatments to the breast and axilla. During chemo many of us are given Neulasta or neupogen, which helps build up white cells which are inadvertently being compromised by the chemotherapeutic agents. These white cell boosters will provide some level of protection against opportunistic infection, and frankly, I would rather be in a chemo suite than an operating room in the center of a hospital right now. Wishing you the best and so sorry you have these additional worries - dealing with breast cancer is hard enough, right?

wahoomama - the best argument for chemo before surgery in my opinion is that if you have a good enough response to chemo, it can de-escalate your treatment. It didn't work for me, I did show response to chemo but still had residual cancer in my breast and in 3 lymph nodes so I ended up still having everything - bmx, alnd, rads, etc. I was really hoping to skip some of those, either alnd or rads, but alas it was not to be.

Thank you so much for this comprehensive answer. This does make sense. I'm anxious to meet with the MO today to see what he says also. My friend who had the exact kind that I have, had surgery first, but she did not have an lymph node involvement. So I can see where that pre-surgery chemo makes sense there. I'll be asking all those questions today.

wahoomama - it is pretty unusual to see no response to neoadjuvent treatment - Herceptin, accompanied by a taxane chemo, is a game changer in treating Her2+ breast cancer. One thing to consider is having surgery first and then encountering complications that delay chemo/targeted therapy. This can happen even to healthy people. Complications increase with bi-lateral mastectomy versus unilateral, and increase again with immediate reconstruction (tissue expanders), minimally 20% or more. I am one of those who had surgery first - I was treated long enough ago that neoadjuvent treatment was not the standard of care. I did have post-surgical complications - that nobody saw coming, and surprise positive nodes - also that were undetected by palpation or any imaging, including MRI. This caused four additional surgeries before I could begin systemic treatment and resulted in a 14 week delay, which was scary with a 2.6cm tumor and two positive nodes. Studies have shown that time from surgery to chemo and impact on disease free survival is most beneficial at 30 days, worse at 60, worse again at 90. The goal of systemic therapy is to control the metastatic threat, and studies have found that in tumors 2cm or larger, or node positive patients, there is more benefit from neoadjuvent therapy than adjuvent. Also important to note that due to the current state of affairs some hospitals are only doing bi--lateral mastectomy with no reconstruction, or only unliateral mastectomy, and will do the prophy breast and tissue expander placement down the line. Due to wanting to limit in-office appointments, some plastic surgeons are not doing fills or exchange surgery in the foreseeable future so are not placing expanders. If you are considering surgery first, you might want to check on this so that you are not left with fewer/different options than you might be thinking.

Wahoomamma - sounds like you have a good team in place and are asking the right questions. Stay close to those of us on the threads.

• Wahoomama TCH chemo is very easy on some, harder for others (it was hard on me, but not as hard as with the addition of perjeta for my first few cycles), so for some things you'll need to wait and see how it effects you.
• Nausea tends to not be much of an issue, but other G.I. effects might be a problem (diarrhea or constipation, indigestion, heartburn, stomach or gut pain) so it's good to have meds for those things on hand.
• An extra gentle toothbrush and mild flavored toothpaste for mucositis, soft bamboo "liner caps" on amazon for prickly scalp pain at night as your hair falls out, lots and lots of Kleenex! I also relied heavily on artificial tears, KY jelly, and good body lotion- chemo really dried me up insode and out, and made all my mucous membranes raw, bloody and painful.
• Stock up on easy snacks and meals, prep stuff and freeze ahead etc. Many people have taste buds affected and water tastes awful but sweet and sour things taste good, so have lots of beverage options (ginger ale, lemon lime soda, lemonade etc).
• I started to get neuropathy right away, and nipped it in the bud with good quality glutamine powder (10g 3x a day). Some people ice hands and feet during chemo for this. Good luck!

morrigan - I used a capsule of B6 (100mg) per day and 30g of L-Glutamine powder, in 3 doses of 10g, dissolved in a cold non-acidic drink. Both are thought to help prevent neuropathy, or lessen the severity. Alpha Lipoic Acid is also on the list of supplements that may be helpful. I also used Acetyl L-Carnitine, but a later study showed issues so some oncologists stopped approving and/or recommending it, although they used megadoses in the study. I had six infusions if Taxotere/Carboplatin/Herceptin and did experience neuropathy on the bottoms of my feet, fingertips, and tongue from the outset. For the first three infusions the neuropathy resolved by the next infusion. From the mid-point on it stayed but by about 90 days PFC (post final chemo) it was gone. For everyone, check with your MO before using any supplements during chemo