TRIPLE POSITIVE GROUP

debiann · February 2016

Twiggy,

I had an EKG last week that showed the same thing, myocardial infarction, or something like that. ANYWAY, I read it on my online report and it scared the beegeebees out of me till I researched and learned that EKG's often give a false positive for MI's. An echocardiagram may be ordered.

In my case, the DR. said that my EKG's always read that way, but their is no evidence of a silent heart attack, its just my "normal".

Good luck to you.

PatinMN · February 2016

Twiggy - my pre-surgery EKG also showed a previous (unknown) heart attack. So they sent me for an echocardiogram, which was perfectly normal - no evidence of a heart attack. The EKG was just wrong. And of course I would have needed an echo anyway before starting Herceptin, so it all worked out... Maybe your EKG will also turn out to be wrong.

KateB79 · February 2016

Wait, WHAT?

Twiggy, I'm going with the others. The EKG was probably wrong.

My update: apparently I had what looked like MVP on my very first echo (this decade, anyway) back in July. No sign of it in October, and then it was back in December with mild regurg. My MO's office says this is nothing to worry about, and we'll look at it again when I get my next echo.

Thanks for helping me breathe through it, ladies!

twiggyOR · February 2016

I'm hoping it is just incorrect. I guess the good part is I will get my heart checked out.

lago · February 2016

KateB79 for most people it does go back but the gal who started this thread never fully recovered.

Kaths2go · February 2016

Just a note to your comment you shouldn't talk negative on here it might scare some woman into thinking there's no hope for them.

fightergirl711 · February 2016

Triple positive ladies - I am just going to throw this one out there... This one is definitely a taboo topic.

Short story: I had a second biopsy of the affected breast, and it came back negative. This is good news of course, but my VERY GOOD breast surgeon WHO I LOVE said we can easily do a re-excision of the initial lumpectomy to get the clean margins after chemo. However, since I had 4/4 nodes positive the first time around, I'll still need the full ALDS. I will need radiation whether I do a re-excision or mastectomy, so that's not negotiable.

My challenge - I had somehow convinced myself in the last month that I needed a mastectomy on the left side, but now I don't, and I'm struggling with the decision. It's the TRIPLE POSITIVE diagnosis that's throwing me, and the radiation. If I need or choose a mastectomy later, reconstruction might be harder after radiation. With triple positive, the recurrence is NOT likely in the breast, and more likely elsewhere. I honestly prefer the "less is more" approach, but I want no regrets (whether if I go with a mastectomy or not.)

I don't need to make this decision today, and I plan to talk to my oncologist and surgeon and a cosmetic surgeon anyway. I just needed to get it all off my chest. It's a touchy subject, and a personal one, but one I know many struggle with.

edwsmom · February 2016

HI Fighter,

You're right this is tough and everyone is different.

I am triple positive too. I also had zero cancer found in either breast (an occult cancer - just found in 2 of my lymph nodes).I did TCHP which shrunk the nodes, but I didn't get a pcr.

I decided to do BMX and ALND.

Everyone's decision is different but I wanted to be as aggressive as possible. I also didn't want to have to do anymore mammograms - I no longer trust them.

I'm healing now after my BMX - they were able to go straight to implant in one surgery. The BS removed all of level 1 and 2 of my lymph nodes on the left side (21 nodes and surrounding tissue) I start radiation on the remaining left lymph node area in 4 weeks. Then I'll start hormone therapy and the rest of my year of Herceptin.

In terms of radiation being "harder after reconstruction"...that's what I was told too. Radiation does negatively impact the skin, makes it harder to sew up your skin. Radiation first will also reduce your surgical options (for example, I couldn't have nipple sparing BMX since I needed radiation). My PS, BS and RO met to decide the best result for me was to do reconstruction first (get those implants in) take a few weeks to heal and then do radiation on the lymph area (no need to do radiation on the breast area since the breast tissue is gone now). Radiation may impact my skin but it will have already healed from the surgery when it was healthiest. I didn't know this but more and more doctors feel they get better results with the implants already in during radiation. I was under the impression before that they didn't do it that way (hence tissue expanders). I didn't believe it at first and got two other PS opinions which said the same thing (surprised me!)

I am being seen at a NCI cancer center in Washington DC, so I have to trust that they know what's right to some degree...but my choosing to be as aggressive as possible was for me, my family (I have a 3 yo son) and my future peace of mind.

Anyway - just wanted to share my current situation to give you some other questions to ask.

ElaineTherese · February 2016

fightergirl,

I had a lumpectomy and ALND. My thought process was that the doctors could always do a mastectomy later, if needed. I did have a PCR in that chemo wiped out all of my active cancer in my breast and in one compromised node. I have twins with autism, and they are high maintenance. I wanted to avoid surgery which makes it difficult for me to physically function as a Mom. Many women do sail through reconstruction without difficulties. However, many women do end up having complications and multiple surgeries. I didn't want to be one of those women. Also, my radiation oncologist is not a fan of doing reconstruction and then waiting several weeks to begin radiation. By then, he thinks, it may be too late. So, I chose what I chose. I'm happy to say that my lumpectomy has left a minor scar on my breast and that it retains sensation. But, that was my choice. You have to think about your own situation and what is best for you. Best wishes!

KateB79 · February 2016

fightergirl,

That's good news about the other breast.

I toiled with the decision, too. I originally had a left-sided skin-sparing mastectomy instead of lumpectomy, which revealed multifocal tumors--it was the right choice. I was node negative and originally told that I wouldn't need radiation. I had every intention, early on, of going the reconstruction route, but then I started to get paranoid about the other breast, so I had it removed, too, and am now flat and fabulous (or just flat, depending on your perspective). The pathology for both the revision on the left (extra skin removed) and on the healthy breast came back good--but I'd just completed six rounds of TCHP. There were a couple of focal calcifications on the healthy side that could have turned ugly down the line; I'm 100% confident that I made the right decision.

Rads came as a surprise to me. I wrote about it here when I was on the fence, but for me it was optional insurance. I'm an odds-player by nature and not much of a gambler on the whole, so I went for post-mastectomy chest-wall rads on the left side. The triple-positive DX is one of the high-risk factors on the list of high-risk factors presented to me by both my MO and my RO--they don't mess around. HER2+ is nothing to mess around with, and you're right to acknowledge that. But it's not a death sentence, not by any stretch.

My MO put it to me like this: triple-positive isn't the BEST kind of BC to have (assuming that there's a "good" kind), but it's not the worst, either. Herceptin and Perjeta have been absolute game-changers, for one. Two, we have a three- or four-pronged approach to cure: chemo, targeted treatment, endocrine therapy, and maybe radiation.

Radiation definitely reduces the likelihood of successful recon, especially if attempted within the first two years following RT. So if recon is on your agenda, keep that in mind.

Your surgical decision is an incredibly personal one, one that might require some serious soul-searching. I obsessed for months before making my choice, and I haven't looked back since. Here's a decision-making tactic that a wise old friend once shared with me (and it's worked more than once for me during this whole process): for 24 hours, pretend you've made the decision, either way. Sit with it and see how it feels. You might just figure it out that way.

xo

JerseyGirl22 · February 2016

fightergirl,

This decision is so personal, so involved! For me, I went with BMX... I had a 6cm tumor on the right, and calcifications on the Left, that hadn't turned nasty... I did see a PS and talked to him about implants, and what would happen if the TEs didn't work out after radiation... I can honestly say that for me, going flat with a BMX (i.e. no recon) was the best decision for me. I did 6 rounds of TCHP, and the tumor did shrink down and the 5 nodes that were positive were more scar tissue than cancerous. However, when they biopsied the right breast tissue they found A-typical cells that might have turned unhappy, so I'm thankful I went with the BMX and they got clear margins for all of it... Being Triple+ I wanted to reduce as much risk as possible so, chemo, BMX, and rads, along with hormonal therapy are what I had to really consider, as a complete package.

For me, I'm confident I made the right decision. Kate is right, sit with the decision for 24 hours and see how you feel. I believe we have intuition that does help us, if we settle in to it really listen to it...

fightergirl711 · February 2016

Thank you all for so much feedback! I'm glad I posted it here with others with similar diagnoses, it's too wide open. I'm receiving treatment at Dana-Farber (after I had my first lumpectomy I felt like I needed a second opinion) and they have been nothing short of spectacular and unbelievably thorough. They are the ones that have prescribed the big guns for chemo, and recommended ALDS from the get go - the other hospital didn't. So I put a lot of value in what my medical team recommends since they haven't seemed to want to gamble this diagnosis by any means. I have months to still think about it since I only started treatment in January (12x Taxol, 4x Herceptin and Perjeta, after that four rounds of AC) and I'll likely be in chemo until May or June. So surgery won't be until this summer. I've had so much imaging, but as you know, you really don't know what's going on until they get in there and do the pathology. My right breast is completely healthy, but if I remove the left breast I'd likely do reconstruction right away in one operation. Does that mean they need to cosmetically address the right side too? But until I speak to the surgical team I can't really say. I have no clue. And re-excision is still a possibility.

Then, there's something to be said about no more mammograms. I don't necessarily trust them anymore either. I've had mammograms every 6 months these last two years - how could you miss a 2.9 cm tumor? That's another story. But something important to think about too.

All of your stories and advice are extremely helpful - more than I can say!

lago · February 2016

fightergirl711 even if you did remove the breast there is still a 2% chance a new breast cancer could form. Also regardless of MX or lumpectomy the highest risk for local recurrence is the scar, rads or not. If your surgeon and oncologist state that the lumpectomy is OK, then you don't NEED to get the MX. I would see what they both recommend regarding re-excision. There are studies that actually show lumpectomy with rads can be a bit more successful that MX without rads. Granted you are doing rads anyway.

There are no guarantees. You could go either way (and both would be correct in this case is seems). If your MDs say you can safely keep your breast then keep it since you want the less is more route.

fightergirl711 · February 2016

Thanks lago - they are very much into less is more in terms of surgery, and I agree. I need rads anyway, no matter the decision. My challenge really is if I end up having a recurrence, reconstruction might be out of the question. AND my peace of mind, of course! But that's an if - like you say, no guarantees. I have time. I posted it here, I know it's an extremely personal choice, but I wanted to throw it out to others who have had the same dx, just to hear about the decision making process. Thank you!!

Moonflwr912 · February 2016

fightergirl, reconstruction is not necessarily out of the question. Implant sx is made harder by Rads but the other options like DEEP, flaps and other autologous reconstruction can be done. Also fat grafts have been shown to help radiated skin soften enough for implants- although that process is much longer and not guaranteed. Please check out the boards here on no reconstruction as well, that may help you. And, know that even simple implants can give you issues you're not ready for, see my signature! LOL consider reconstruction to be taken as it comes; it is not a race, although we all want it done yesterday.

Know that you will make the right decision for YOU with the information you have regarding your own situation at the time you make it, because you took the time to think about it and gather information and input from your medical team. No one else has the same situation so you make the decision that makes you feel right. PS. Reconstruction can be done even after many years, no end to rush.

Much love

lago · February 2016

fightergirl711 my friend is a 3X survivor of breast cancer. She just had a new breast cancer in one of her breasts. She had a lumpectomy/rads before. She got an MX and did reconstruction with implants. It's been so many years since rads that her skin was OK to do recon. So you never know.

ashla · February 2016

hello everyone...

An interesting article about the new and much needed field of cardio- oncology....

http://www.tctmd.com/show.aspx?id=133813

__asher__ · February 2016

Just found out Friday that I'm Triple Positive. I'm already getting so much great information from the brave women on these boards. Thanks!

ElaineTherese · February 2016

Welcome, Asher!

I was stage IIIA on my right side, too.

lago · February 2016

asher, welcome. I was stage IIB with a big tumor, almost stage III. I'm 5.5+ years NED. My neighbor diagnosed right after me was stage IIIB. She too is still NED. We had the same team, same treatment except she got radiation and I did the bilateral.

ElaineTherese · February 2016

Ugh, mammogram today. Lots of squishing of my lumpectomy breast. My regional breast care center is finally offering 3-D mammograms; the techs were beaming with pride and said that they could see much more with the new machine. Well, the area around my scar tissue looked "different" with the 3 D machine, so the radiologist ordered an ultrasound right then and there, which showed....nothing. I sometimes wonder if the more advanced scanning they do, the more likely it is that they will find "something." I already had a false positive via a PET scan (which led to an MRI) and now this!

fightergirl711 · February 2016

ElaineTherese I'll take the false positives any day.

edwsmom · February 2016

HI Triple + ladies,

I meet with my MO next week and we're going to talk about my post-surgery path report. I initially met with the BS when the report came out and she felt there were several places where the report was unclear even to her. She asked the pathologist to clarify - the answers were only marginally helpful. I asked more questions via email and my BS forwarded them to the pathologist, and then forwarded me his email response (without providing me any context or commentary on his answers). I'm hoping that my MO can do a better job of helping give me some perspective on my risk of recurrence and some context around where I stand with what the report found.

My situation is unusual in that I had an occult primary - no primary breast tumor was ever found via mammogram, ultrasound, MRI and PET scan - just breast cancer malignancy found in a single enlarged lymph node (found via biopsy when they noticed the node seemed larger).

I did TCHP then had bilateral mastectomy and ALND (they removed both full levels 1& 2 of my lymph nodes on the effected side). In looking microscopically at all the tissue that was removed during BMX, the pathologist found no evidence at all of breast cancer in either breast. The lymph node that initially was enlarged still had 1.1 cm of carcinoma still there and they found a second lymph node that had a small amount (6 mm). In the initial lymph node cancer had just started breaking through into the outer tissue.

I keep hearing such good things about the prognosis for those who achieved NED after TCHP and many people sharing that they were able to achieve NED after treatment. Since I wasn't able to achieve that and in fact feel like more was found after everything, I'm really scared.

Any triple + ladies out there who didn't achieve NED who can give me some encouragement? I'm super nervous that they still found cancer in that node PLUS a second new node.

Should I be looking for someone who specializes in occult primaries like this or in lymph node malignancy? I My way of coping is often trying to find more things I can do to make things better, but at this point I don't know what to do and feel a little helpless (especially waiting for my appointment to talk about this with my MO and hoping that she doesn't think this is as bad as it sounds to me).

ElaineTherese · February 2016

edwsmom,

I'm sorry that your particular circumstances have you feeling a little paranoid. Not everyone comes away from chemo cancer-free. AC+T destroyed all of my active cancer in my affected breast and lymph node, but my lumpectomy removed a tiny pocket of DCIS. Nevertheless, I still feel like I have a decent prognosis.

As for your case, maybe your cancer just wasn't as responsive to TCHP as others' cancer was. Just because we're all triple positive doesn't mean that our cancers are identical; rather, our cancers just have similar characteristics. For example, your signature doesn't reveal the grade of your cancer, or the degree to which your cancer is ER+PR+ or HER2+. There can be subtle differences that made your cancer heartier and better able to survive chemo.

Are you going to get radiation? That might provide you with some additional insurance against recurrence.

edwsmom · February 2016

HI Elaine,

Thanks for your response. Yes, I'm 3 weeks post surgery and I'll start radiation on the axilla in about 3 more weeks (as long as they feel the skin has healed enough.

I've heard so many people share that their BS excitedly told them that they got it all out during surgery. Mine didn't comment either way. She was very matter of fact and maybe that's what I'm reacting to. I might just need some context. Was this a good response? They removed 21 lymph nodes, including 2 that had cancer cells - good result/concerning result?

I have a small family history of BC so I chose to do BMX as well (since they know that whatever was in the lymph nodes was breast tissue so it started there at some point).

I know no one will give me any guarantees (nor would I expect any) but I really feel like I have no idea where I stand after all this.

In addition to radiation, I'm finishing my year of Herceptin and will be starting on likely 10 years of hormone therapy too.

NicoleIsASurvivor · February 2016

Hi, I was diagnosed in August 2015. I don't feel like any of my doctors really care. My whole cancer experience has been horrible....I don't know if I should change oncologist at this point...she acts as if I shouldn't have any side effects from chemotherapy, Taxol, from my understanding that side effects like severe muscle n joint pain is from nerve damage and depression. I've never felt so mistreated in my life and I feel its because I'm triple positive and just feed my lies to get me to be quiet. Ugh....Tired and confused.

lago · February 2016

Babygurlwarren why not change oncologists. It sounds like you could only improve.

ashla · February 2016

Babygurlwarren....

Sounds like you aren't getting the support you need in this very difficult journey. There are plenty of side effects and roadblocks in this long complicated and physically exhausting triple positive treatment regimen.

And you MUST be able to openly and comfortably discuss them with your caregivers. If you don't..you may have unnecessary long term problems .

There are also meds and therapies that can help ease your side effects.

Suggest you seriously consider a change. I switched in the middle of treatment.

In the meantime...Speak up. Speak out. Tell your doctor every problem that worries you...whether or not she's receptive.

KateB79 · February 2016

Babygurlwarren, I agree. Change oncologists. It might take some work to find one you like, but it's worth it.

Remember: your medical team works for YOU. Not the other way around. You have every right to speak up, to ask for what you need, and to expect a compassionate bedside manner!

KHinMD · February 2016

Babygurlwarren - Reading your post had me frustrated and concerned for what you are going through. I am going to add my voice to the chorus that you should change oncologists if your current one continues to not show concern about your SEs. The last thing you want is for her to not take your SEs seriously when you should be getting something looked at further. Just curious, how many treatments do you have left?

This is my first time posting on another board. I am currently undergoing chemo, so all of my posts have been in the December 2015 Chemo thread. I read other threads, but I just haven't posted in any yet. I have 2 treatments of neoadjuvant TCHP chemo left. I figured I would branch out and post on other threads once I finish chemo. I hope everyone here is doing well no matter what stage in this journey you find yourselves.

TRIPLE POSITIVE GROUP

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