TRIPLE POSITIVE GROUP

ElaineTherese

Hi Fleur!

If you're interested in searching for more information about your diagnosis, you might be better off searching for information about HER2+ breast cancer.

See http://www.breastcancer.org/symptoms/diagnosis/her2

About 25% of breast cancer patients test positive for an overexpression of the protein HER2, which encourages the cancer cells to divide and divide and divide. That's why HER2+ breast cancer is typically Grade 2 or Grade 3 and is considered aggressive. About half of the breast cancer patients who test positive for an overexpression of HER2 also have cancer that is fed by hormones (ER+/PR+). Hence, triple positive BC patients typically get BOTH targeted therapy for the overexpression of HER2 (e.g., Herceptin) and hormonal therapy (Tamoxifen or an aromatase inhibitor) to starve the body of the estrogen that has been contributing to the development of cancer cells.

Your case is interesting because your cancer is apparently Grade 1. It is also small, less than one centimeter. May I ask, how small? That may impact whether or not your doctor recommends chemo.

((Hugs)) and best wishes!

T-Sue

Hi Fleur, Sorry your diagnosis has brought you here, but this is a great community. Elaine has described HER+ well and the link to the article on this site is a good one. My cancer is quite similar to yours small, triple + and State 1A. The difference is that I had two tumors, so a lumpectomy wasn't an option, we had to go with mastectomy (and at that point, why not get them both off!)

I think one of the main differences in treatment is that if you receive chemo, you will likely also get Herceptin which is specifically to target the HER+ protein. With my diagnosis, my oncologist recommended a low-dose of 12 weekly Taxols which has been more tolerable than some of the more aggressive chemo cocktails.

Good luck to you!

Taco1946

11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ - that's me. Being treated for the triple positive. Taxol and brachytherapy (because of small tumor), and but now AI. Good info, Elaine.

Lita19901

Fleur,

It is interesting, as Elaine says, that you're only Grade 1 and HER2. Can I ask what your HER2 ratio/numerical value is?

I'm new here myself and am waiting for lumpectomy pathology report results

Lita19901

Hap - yes, and no. Different studies are showing treatment response that differ based on HER2 ratio, and oddly enough, the response is less for those with a low HER2 ratio and/or cell copy number, which raises the possibility that HER2 positive cancers need to be divided into different groups regarding prognosis and treatment other than HER2+driven and Luminal B subgroups.

Nothing concrete at this point, and it may not prove true, but it's interesting.

FleurDeLis49

Thank you all for the information & support! I'll answer questions as best I can - I'm still learning some of the terminology and have only had mammogram/ultrasound & biopsy at this point. I have an MRI tomorrow and second meeting with surgeon on Monday (no oncologist yet).

Elaine, it's marked as 8.9mm on the ultrasound image & listed as 10mm on the path report.

Lita, here's what the path has re: HER2 - Amplified; HER2/CHR17 - 4.3; Average HER2 copy number - 6.8 signals/cell. Is that what you were asking? I've also seen the studies about the subgroups and was trying to find more, but there doesn't seem to be much out there.

One reason I'm posting is because in my surgeon visit Monday, he seemed to feel like chemo would not be necessary, but the next day my nurse navigator told me that HER2+ means chemo without a doubt. Needless to say, that's got me confused, and I know neither of them is an oncologist, but still it's disconcerting to say the least! My care team will be in conference while I'm getting my MRI so I'll find out what they say Monday when I go back for the MRI results. Trying to stay positive!

ElaineTherese

Fleur,

Since you're close to 1 cm, I suspect an oncologist would recommend at least Taxol (a taxane chemo) to be administered with targeted therapy (Herceptin). Deni1661 recently participated in a trial where she didn't do chemo -- she did Herceptin + Perjeta (targeted therapies) + oral aromatase inhibitor. She had excellent results, so you could ask your onocologist about that trial if you like. But, yes, once HER2+ cancer is over 5 mm, oncologists traditionally recommend chemo.

((Hugs)) I know it can be very confusing at first! Good luck with your MRI!

SpecialK

fleur - generally, tumors larger than 5mm receive systemic treatment if they are Her2+, which includes chemotherapy and targeted therapy like Herceptin. It appears that your tumor does not meet the size threshold for inclusion of Perjeta as a targeted therapy, as that is 2cm or larger, or can be administered if the tumor is smaller but you present with positive nodes. What this means is that you are likely to have surgery first, and if your tumor size remains consistent with what has been imaged so far, be considered for a less intense chemo regimen, like Taxol and Herceptin in 12 weekly infusions, then continue the Herceptin only for a year. Currently, it is mainstream philosophy that chemo helps the Herceptin work better. Once you are done with the chemo portion you would also be adding anti-hormonal therapy to help keep the ER+ element from fueling a recurrence.

Here is a link to the NCCN guidelines page with systemic treatment considerations for smaller Her2+ tumors:

https://www.nccn.org/patients/guidelines/stage_i_ii_breast/#50

Also, some info for systemic treatment for stage 1 patients who are Her2+, there is also the link within this article to the actual study:

http://www.breastcancer.org/research-news/herceptin-plus-taxol-reduces-recurrence

Important to remember too, surgeons are not the physicians who specialize in systemic treatment. Rely on your oncologist for those decisions.

moodyblues

Kattis894.  I too have been 'off' BC.ORG here lately as I read something that really freaked me out about re-occurrence.  I mean, I started waking up in the middle of the night again over this cancer.....that hadn't happened for a long time.  So, I was taking a break from it.  I realize that not everyone's story will be my story, we are all so different.  I trust that God has got this and worrying cannot change anything EXCEPT to bring in fear.   Fear knocked on the door Faith answered. 

Hang in there.

deni1661

Fleur, sorry you have to be here but this is the best place for information, support, inspiration and new friends who understand what you're going through!

I have been participating in a clinical trial (details below) since September 2016. I get Herceptin and Perjeta every 3 weeks and take a daily aromatase inhibitor (Letrazole). I did not do chemo. I had a mastectomy (only because I had 2 tumors) and pathology results were terrific: clear margins, clear lymph nodes and only a few single cancer cells in the tissue. My side effects from HP were minimal but the AI causes me a few minor issues (runny nose, dry skin, brittle hair, fatigue and tailbone pain). I changed my diet significantly after diagnosis and my MO said that may have contributed to how quickly and fully I responded to the HP. I have 2 treatments left and despite the side effects I feel great and very grateful for the opportunity to participate in this clinical trial.

I wish you the very best and pray you respond well to whatever treatment you choose. Feel free to private message me if you have questions.

Take care, hugs


NEOADjuvant Aromatase Inhibitor and Pertuzumab/Trastuzumab for Women With Breast Cancer (NEOADAPT)

https://www.clinicaltrials.gov/ct2/show/NCT02689921?term=Cancer+treatment+centers&cond=Breast+Cancer&cntry1=NA:US&draw=1&rank=2

Icedgem

---

Hello everyone, I am new to this site and recently diagnosed with triple positive breast cancer. I have found all of the info given on this forum to be very useful, there doesn't seem to be much info out there that I could find for triple + cancer. I have just been tested ( yesterday) for the genetic gene mutation as they think I have a risk of having a Brca1 / brca2 or other gene mutation. My results are in 3 weeks and my surgery is dependant on the results. If I am positive then I'm looking at a bilateral with reconstruction and oophorectomy. If not then a lumpectomy. My tumor is about 1.5 cm and grade 3 and is up against / growing into the pectoral muscle. My surgeon suggested chemo first to try to shrink the tumor so they can get it away from the muscle and therefore get clear margins. My case it being discussed later this week at the tumor board. I hope they start treatment soon, as the constant waiting for results and knowing this thing is in there doing what it wants scares me, I need to start the fighting back.

From what I have read about, most gene mutations are in triple negative or Her2 / new negative cancers. I haven't come across a triple positive person who had Brca1 or Brca2 as yet. If there is someone out there with this combo I would love to hear from you.

Take care and lots of hugs to everyone

Icedgem

Hello everyone, I am new to this site and recently diagnosed with triple positive breast cancer. I have found all of the info given on this forum to be very useful, there doesn't seem to be much info out there that I could find for triple + cancer. I have just been tested ( yesterday) for the genetic gene mutation as they think I have a risk of having a Brca1 / brca2 or other gene mutation. My results are in 3 weeks and my surgery is dependant on the results. If I am positive then I'm looking at a bilateral with reconstruction and oophorectomy. If not then a lumpectomy. My tumor is about 1.5 cm and grade 3 and is up against / growing into the pectoral muscle. My surgeon suggested chemo first to try to shrink the tumor so they can get it away from the muscle and therefore get clear margins. My case it being discussed later this week at the tumor board. I hope they start treatment soon, as the constant waiting for results and knowing this thing is in there doing what it wants scares me, I need to start the fighting back.

From what I have read about, most gene mutations are in triple negative or Her2 / new negative cancers. I haven't come across a triple positive person who had Brca1 or Brca2 as yet. If there is someone out there with this combo I would love to hear from you.

Take care and lots of hugs to everyone

T-Sue

Icedgem - I'm so sorry for your diagnosis. The waiting and the angst during the initial diagnosis is really the worst! I began to fear every phone call and was so drained from the uncertainty. I honestly think that period was the most mentally draining of the whole process so far (and I have had my double mastectomy and am middway through chemo!).

Hang in there! Come to these boards for support and find pleasure in your daily life!

Sending you hugs from Colorado!

toughcookie_21

Icedgem I'm so sorry for the circumstances that have brought you here, but you're in the right place. I tested positive for the brca2 gene mutation and am her2 positive. I got the genetic testing because I was adopted at birth and did not have any family medical information. I haven't heard before that this was a rare combination.

PoseyGirl

Hi All,

I've been off the board for the last couple weeks (emotionally kind of drained lately). I hope you're all well...

I have a question...I've been experiencing some nausea over the past almost 2 weeks. I don't throw up, but my stomach is upset at least half the day. I don't have full on diarrhea, but about two steps away from that. The nurse at the hospital said to go see my GP. My most recent bloodwork was July 5 and showed normal liver function in looking at all the enzyme markers, bilirubin, etc.

Is it possible that I'm going through late side effects from Herceptin? Is there such a thing? i.e. side effects that start to come after you're later in your treatments? I don't think doctors think this happens, but I just wonder. I'm going to get it checked out, but thought I'd ask here. I'm also on Letrazole and started that 2 months ago. I take supplements - Calcium, Vitamin D, Magnesium, Krill Oil, Turmeric. I cut out the Magnesium on the off chance it's doing this to me (but I doubt it). It's getting me down.

Thanks...

emily_mh

I was just diagnosed last month and I started chemo last Wednesday (9 days ago) I am going to talk to my MO tomorrow but I feel like I should know more about my lymph nodes. Isn't it important to know if it's spread to the nodes? I'm having 6 rounds of chemo before surgery. I had a breast MRI that showed two abnormal looking nodes but when I was sent for an ultrasound biopsy, the radiologist couldn't find any nodes to biopsy. I guess I should be relieved by that, but I'm not. Is this normal procedure fro triple positive people? to not know about nodes until the surgery after chemo?

ElaineTherese

PoseyGirl,

Since chemo, I've had stomach issues similar to IBS, with cramping, abdominal pain, bloating, gas, and diarrhea. Fortunately, these symptoms have only surfaced about twice a year, and they only last a few days. I avoid eating certain foods (cabbage, beans, and fatty foods) that exacerbate the bloating and gas. I don't doubt that chemo/targeted therapy may have permanently affected my digestive system. However, I can't freak out about it. As long as my mammograms are clean, and I don't have any other symptoms, I'm good.

Hope you feel better soon!

PoseyGirl

Thanks, ladies.

But isn't it odd that this would be treatment related if it's been 15 Herceptin treatments? Doesn't that seem late in the day to start getting side effects?

As for being sent to my GP, what I'm being told in general at this point is that there is a 'standard of care' in terms of when they order tests and not. So if you have a general complaint, you should see your GP. I find it annoying. But I'm in tomorrow having an echocardiogram. I'm going to go to the cancer centre and talk to the nurses about it more. I've dropped a notch in my belt in one week's time. Did you have any nausea, Elaine? For me, the main symptoms are feeling an upset stomach, 'almost' diarrhea, lots of gas and generally feeling off. My energy is the same - no fatigue.

debiann

Posey Girl

Is the krill oil a new supplement for you? My stomach cannot tolerate fish oil and krill oil is similar. Here is what web md has to say about krill oil.

"krill oil can cause some side effects similar to fish oil such as bad breath, heartburn, fishy taste, upset stomach, nausea, and loose stools."

GlasgowGirl99

Post a reply

Hi everyone. I have a dilemma and am looking for your opinion.

Most of you know I have been having problems with my wound since having a lumpectomy followed by further surgery to clear the margin and then starting weekly taxol. I had 2 cycles, wound opened, had a break of 4 weeks until wound healed, had another 3 cycles of taxol, wound broke down again and am on another break waiting for it to heal.

I met today with my oncologist and now have a decision to make over weekend. I have 2 choices:

i) Stop Taxol and go straight to AI and 4 weeks of radium (also getting herceptin every 3 weeks for a year)

ii) Give Taxol one more try (have had 5 cycles of 12 so 7 cycles left) but have a very high risk of wound breaking down again which would push my other treatments out until wound heals again. There is also a high risk of infection as I did have one the first time wound opened and oncologist is afraid next time it could be worse, even life threatening.

I am so afraid of stopping chemo but that is what my head and heart are both telling me to do. I really wish the oncologist had made the decision for me but unfortunately she hasn't so it's down to me.

Any advice is greatly appreciated. I am also posting this in the weekly taxolgroup forum.

Thank you everyone ☺️☺️

AliceAgnes

I'd do what my head and heart tell me to do. Besides, there is always more than one way to kill cancer and anytime your doctors offer an alternative way, it's because they have confidence the alternative will work.

SpecialK

posey - try adding a probiotic, it helped me during Herceptin only

emily - the problem with neoadjuvent chemo is that your staging can be a bit murky if your nodal status is undetermined prior to starting. Even if you were node positive the treatment would likely be unchanged. If at the time of surgery your sentinel node looks like cancer had been present your oncologist would most likely opt for radiation. I like to advise having a SNB done at the time of port placement if at all possible so that nodal status is more clear prior to chemo, if imaging has not revealed known cancer in the axilla

Lita19901

I'm going slightly nuts waiting for the pathology report from last Friday's lumpectomy. When I had DCIS surgery a few years back both times the results came on Wednesday following aFriday surgery. Does a pathology report for IDC take longer than one for DCIS?

ElaineTherese

Emily,

I had a fine needle biopsy of a suspicious node, but that was only possible because the ultrasound technician could find it. Your nodal status won't change your chemo plan, but it could affect how many nodes are removed during surgery. Generally speaking, the more nodes removed, the higher your chances of lymphadema. Maybe you could have an MRI-guided biopsy of the suspicious nodes (Special K -- is that possible)?

Yes, doing chemo first does make staging more difficult, especially if chemo wipes everything out!

GlasgowGirl99

HapB - I haven't seen a wound specialist. The breast care nurse specialist has been taking care of me so I am in good hands. When I was started on taxol there was already a query about the wound not being fully healed. As they were anxious to start they decided to go ahead. In hindsight it probably was started too soon and now the chemo is breaking the wound down after 2/3 cycles. The BCN told me straight she thought the wound would continue giving to give me bother and my oncologist agreed today.

I have decided to quit the Taxol and move to the next step. I have to start hormone therapy (more research for me) and 4 weeks of radium. The radium is another worry as there cannot be any breaks in the treatment. I have to hope the wound will be completely healed before it starts and won't break down during the 4 week treatment.

I hope and pray this is the right decision to make 🙏🏻😔💕

Good luck to everyone on their Taxol journey, whether just starting or nearing the finishing line. Sending love and best wishes to all of you ❤️☺️☺️

Suburbs

emily_mh, I pondered this very question many times. If my node status is murky then I don't know if I will need radiation. My disease was multi-focal - dcis and IDC. So, once an MRI confirmed the second field of cancer, then a lumpectomy was off the table and a mastectomy was required. At that point with neoadjuvant chemo planned, there was no reason to order a node biopsy. I waited until surgery after 6 rounds of TCHP to find out my node status. It bothered me very much not to have a complete staging initially. Everyone's situation is different; however, going months without a complete node picture is normal.

deni1661

Hey poseygirl - you and I are on the same schedule, I only have 2 treatments left also. I've had nausea and dizziness the previous 2 infusions and my MO did say it could the HP accumulating in my body causing a new reaction. It's always worse the week to 10 days after treatment. Or it could be the Letrazole or a combination of all of the above. He expects things to get better when I'm done.

I hope the same for you and things get better. Hugs

deni1661

lita, the waiting is so stressful - I pray you receive good news very soon. Hang in there

deni1661

Emily mh- I was in the same situation as you i.e I did not know for sure about lymph nodes until I woke up from my mastectomy. They did a few ultrasounds but could never give a definite answer whether they were negative. That always weighed heavy on my mind. I prayed on it a lot and when I woke up, the recovery room nurse was shouting the results to everyone!

I will pray you have the same results, take care

deni1661

icedgem- sorry you have to be here but this a great place for information and support. I agree with T-Sue, the waiting and anxiety in the beginning was the worst part of my cancer experience. Once I met with my oncologist and decided on my treatment plan, my survival skills kicked into high gear. Do your research, don't be afraid to ask lots of questions and have faith you will get through this. We're here for you.

Take care