TRIPLE POSITIVE GROUP

cherry - no, I consider myself undertreated because I did not get Perjeta since it had not been approved for early stage use yet. If I was treated today I would have received it. As far as someone who is ER+ and Her2- receiving Taxotere adjuvently, their Oncotype Dx RS most likely indicated a benefit.

hapb - I think it would be useful to look at the Lancet information that contributed to the Komen chart you cited in the post above. This chart does not include treatment with taxanes, Herceptin, or aromatase inhibitors because the data gathered is pretty old, from 1985 - 2000. For purposes of making assertions about survivability I think it is important to consider the source and use information that is current. Here is the actual article:

https://www.ncbi.nlm.nih.gov/pubmed/15894097

SpecialK - Here's a link for one of the studies that discusses the variety of survival stats for BC subtypes. Some of its tables/graphs are a little confusing as not all provide a key but matching them to the study content helps somewhat.

https://www.hindawi.com/journals/jce/2014/469251/

Also - the Predict model shows a difference in survival stats among HER2+ BC subgroups based on ER expression.

Using my specifics, age = 65; Grade = 2; Nodes = 0; Tumor size = 15 cm

(I assume K167 positive with HER2+ and K167 negative with HER2-; w = with treatment; w/out = no treatment after surgery and/or surgery with radiation)

HER2+, ER+

5 year = 91% w/out; 94% with

10 year = 78% w/out; 85% with

HER2+, ER-

5 year = 75 w/out; 86 with

10 year = 62 w/out; 75 with

HER2-, ER+

5 year = 93% w/out; 94% with

10 year = 82% w/out; 85% with

____________________

What I see here is that in the HER2+ ER- BC there are more deaths in the 1^st five years than in the second 5 years but the HER2+ ER+ BC group shows the opposite, which I believe brings into question the recurrence in the first two years information.

Interesting to note is that my survival stats are more like the HER2- ER+ subset than the HER2+ ER- subset - and, please, correct me if I'm wrong, but yours are, too.

Which means, rather amazingly, that our outcomes are more like HER2-/ER+ BC than HER2+/ER- BC! Which means we Triple Positives can breathe a little easier if we recognize that not all HER2+BC is create equal.

(I tried this for different grades, age, tumor size and node involvement and came up with similar patterns.)

_{Lita, she is in treatment now}

Hapb,

If the study is old and innacurate, then yup - that needs to be accounted for. My guess, though, is that newer data would not reveal a smaller gap in survivorship when comparing treated versus untreated arms.

Above aside, I want to clarify that there was only ONE thing I was debating, and that was your statement that for the majority of women, treatment doesn't make much difference. This is the only thing I debate and disageee with. Later, you put out the number 50 percent or more diffierence which I then took to mean as your own personal definition of "much difference". If that is your definition, then you're correct most likely. But that was not defined in your original post - the post I was responding to. I have a different definition of "much difference", and I'm guessing we all do. Over the last several posts, you've explained further that what you meant is that we need the cure and that until then, nothing is good enough. Amen to that; I am of course 100 percent with you.

Lita, on the anxiety and fear front, I perhaps didn't clarify myself properly and I'm sorry for that. I would never expect anyone to withhold a thought or a link in this free forum; we are all part of the same special "club" and should ask or state what is on our minds. Any anxiety I feel from any post (and like you, I have felt that lump form many times here) is NOT on anyone but me. I know for sure Hapb wasn't trying to create anxiety. And of course I never would wish to do that with any post. What I meant regarding that part of my post is that if we make bold statements like "for the majority of women, treatment doesn't make much difference" without parameters, definitions as to what they mean and links to studies, we run the risk of people reading that in a certain way and it could hold significant sway in terms of decision making and, yes, extra anxiety that could affect those decisions.

I am not familiar with your treatment path, Lita, and will never judge anyone for treatments taken or treatments declined. I believe everyone here makes very well informed decisions based on our very unique scenarios. And Hapb, I have never thought you weren't science based in your thinking; I totally get your struggle on cost versus benefit. I was just objecting to one comment made which I don't agree with, but we both now know more of what eachother is thinking when it comes to the discussion of what a treatment difference means to each.

Healthy debate and discussion furthers conversations and understanding, so please know that I find this positive and respect everyone and their intentions on this board!

lita - I am hoping your tumor size is 15mm, not cm? Ki67% is a proliferation marker, you can have a high Ki67% with Her2-, it is similar to a mitotic rate measurement. As far as the time period of recurrence danger, the general thinking is this - both ER+/Her2+ and triple negative, or ER- with either Her2- or + are thought to have earlier recurrence rate danger. With ER+/Her2+ the early recurrence is thought to be driven by the Her2+ piece, and with TN or ER-/Her2+, early recurrence is further compounded by the lack of adjuvant therapy available for ER-. For those who are ER+ with any arrangement of Her2 status, the recurrence risk is thought to linger later because of the ER+ aspect. The recurrence is thought to be driven not by the Her2+, but by the ER+, and potentially affected by discontinuation of anti-hormonal meds at 5 years, or by resistance to those meds developed in the previous 5 years. If I put my numbers into Predict 2.0, the margin of benefit for adjuvant treatment grows in the second 5 year period. If I leave everything else the same and change myself to ER- and Her2-, my first five years has only a slightly lower survival stat, but the treatment benefit margin is smaller in the second five years than if I am TP. In the second 5 years, more people with ER+/Her2+ and the rest of my stats would die if untreated, then if I were TN and untreated. The numbers are similar for me if I manipulate the Her2 status, but because of my other clinical features they are just similarly bad. With my stats Her2+ untreated less than 40% survive at 10 years, with Her2- untreated just under 50% survive. At 5 years, there are 7 additional who survive without treatment if they are Her2-, the treated co-hort is a very close number regardless of Her2 status.

lita - yes, it speaks to the complicated nature of the umbrella term "breast cancer", which is really many different diseases with diverse components. I am one who is highly ER+, 96%, and highly Her2+, a 3+, but I have low PR positivity, single digits on one report - which is a poorer prognosis than if my PR was higher. In some classifications, based on that one pathology report, I would be considered PR- since I am less than 10%. I think the advent of more genomic assays that include testing Her2+ patients is a good thing and will help understanding of the complex array of stats within the subtype, and help refine treatment parameters. I think it would be a comfort for many Her2+ patients if genomic testing for us was as commonly done as Oncotype Dx is for ER+/Her2-. Interestingly, I meet some of the criteria for a Luminal B type Her2+ patient, but on Mammaprint I am solidly ERBB2. Is the study info you are seeing that shows better outcomes for TPs that have higher ER+ indicating which aspect of treatment is providing the most benefit?

Lita I am with you for sure and thinking about being highly positive on all calibers I am holding on to the thought treatment will be highly effective for my type. We are all individual and treatment is getting more and more individual depending on all the variables. When my onc checked the predict survival calculator, as he showed me, I am at 80% chance for survival. I am holding on to that even thought I am sure I could be in the 20% as well. He also explain what Special K is mentioning that HER+ is crucial for recurrence the first few years, stating I have gone threw the first year and now I am on my second crucial year...:( ER+ is looking at recurrences further down so unfortunately the recurrence can happen further down the line as well, therefore the hormon treatment. I am clinging to the thought I will make it threw this but as science have no answers I do not either. There are cases of all sorts, one large even metastatic cancer can be pushed back and some not. Why. We do not know. I guess living day by day is the best option, not looking so deep into ones future, it will only make you go completely crazy. I am praying for more effective treatments in the near future and would love to be in a trial for recurrences but have not found one in my area so far. At least this way you are constantly checked and will be more mentally prepared.

Started my job today, completely exhausted, I have to learn so many new things and find it a bit hard to keep it all in my head...I am weak...but figure one day at a time. I am not a "spring chicken"...and learning PC instead of Mac is a bit confusing to say the least. I wanted to throw the computer out the window mid day...:) I am praying every day I will be ok for at least another 6 months, hoping I can keep this on the back burner for awhile. Drinking green juices every day and trying to take long walks. My body is aching and I feel very stiff but figured I can get threw it. Not for a minute I would dare to stop taking my hormons due to bi-effects. I actually rather be in a wheelchair at this point. Just doing self exams once a month freaks me out.

Hopefully more treatments will come forward in case I get hit again, if not I guess I will go into another battle hoping I can survive a bit longer...I am planning for the worst, getting my testament, acceptance in order but hoping for the best. Keeping hope is extremely important and the last that leaves perhaps. I have witnessed 2 family members succumb to cancer (not breast) and when that time comes it comes, but it is not coming tomorrow morning for me so I will go to work in the morning hoping for the best as I will do the next day and next. Being hit by this illness puts you in a complete panic in the beginning but it gets better over time as you realise I am still alive. I pray for a cure and as I am not a scientist I can not do so much about it. I have promised myself not to look back and regret any treatments I have had, in fact I have promised not to regret anything.

As this week passes I have decided to figure out some kind of exercise I can do to get stronger and I am still looking into a better diet but confused about it.

I too am high ER (90), and low PR (5). I have often wondered about my pcr, thinking that the Her2 component must be driving the cancer - but who knows

Posey I am jealous of your CpR...that only means the treatment really worked and I would think if you had some lingering cancercells in your body they would be as Cpr as the original site...it is gone..:) I was not as fortunate but who knows...perhaps the hormons will take care of the rest at this point. Having no nodes involvement considering the size of my tumor was a pure miracle but pretty sure it still has travelled in my blood stream...there is not way they can detect if the tumor had blood vessels according to my onc...but it seems likely in my mind...this means I would perhaps most likely experience a come back somewhere in my body...:( but miracles do happen in this illness all the time and considering my high PR 85% perhaps that is a good thing according to Litas article...well hoping...:)

Katiss, I know exactly what you mean by being confused by the diet stuff. In my lifetime I've seen so many dietary truths be debunked and seen - and followed! - so many crazy diet fads. I remember at one point, when high protein was all the rage, my mother eating the prescribed Weight Watcher FIVE hotdogs for dinner. Without buns, of course. And I remember a friend scouring the low-fat handbook to find out what score HoHo's had. And eggs were bad, but now they're good. And butter is bad, except it is a mono-saturate and mono-saturates are good. And I remember at 13, when I weighed about 115 pounds at 5'7," devouring a Seventeen article about dieting - and followed it.. It was a rite of passage back then to becoming a woman. Aaagghhh...

For myself, I like the food pyramid. And for exercise I've found as I've gotten older that aerobic exercise isn't enough to keep the weight off, but light weights do the trick.

I'm totally at sea with supplements, except for B12 which I recently learned I was deficient in. So now I take B12. Calcium tablets killed me but I recently read a JH study that they are linked to heart calcification! So go figure.

lita - I think it is generally accepted that less than 10% is borderline negative, but again, how thoroughly are they looking as different slides may contain differing numbers of receptors, and once they get a "positive" result they stop looking. Kind of like being a little bit pregnant, lol! One interesting aspect of the high ER, low PR discussion is that is may be more prevalent in older patients, whereas I have seen numerous mentions of Triple Positive being more common in younger women.

On the food front - on letrozole, if I eat according to the food pyramid, or even eating South Beach diet style - which is essentially sensible Mediterranean - I will gain weight. I am an n=1 trial in that I have had to eliminate some foods to enable weight control and/or loss. Now that I have it figured out for myself I am happy, but I know that most people are not willing to eat the way I do.

lita - a trial consisting of a single enrollee, essentially what amounts to anecdotal evidence.

I agree very much with Hapb re: diet and exercise. I feel so much better when I eat only fruits and vegetables, more energy and less pain. I find plenty of variety too so it's pretty simple to follow. My MO and BS told me the best thing I can do to avoid recurrence is to maintain a healthy weight (which I am at now), exercise and eliminate stress. I walk 3-5 miles everyday and that really helps reduce the muscle stiffness. Sometimes I crave the naughty food but I think that's stress induced. Every single time I eat something from the bad list I feel crummy for a few days. The plant based diet might seem restrictive but it's so worth it because of how you feel.

This might not work for everyone - just sharing what works for me.

hey Kattis, that's great that you were so busy that you were distracted from all this. Way to go

I am not as evolved as many of you here on diet. I have almost eliminated dairy, want to get to where I only eat chicken and salmon, am still grabbing a little sugary treat here and there (my biggest weakness!)... I always try to pick vegetables to eat now, never eat rice or potatoes, I will allow some grains here and there. So I am not sure I will ever be as "good" as you all, but I am making pretty good choices and know that if I take baby steps, it will come. I was pretty up on my exercise this summer, but the last two weeks have been so chaotic with the kids back in school and starting up with a Christmas charity I run...oy.

Kattis, while I was thrilled with my pcr, not having one doesn't mean much for our subtype because of good adjuvant treatments.

Re: the ER and Pr discussion re: age, I was 47 when I was diagnosed and was 5 percent for PR.In reality, I am double positive and I guess I am on that line of "older woman", SpecialK.

Lita, I too am a bit on the crazy side with trends. I fully analyzed the ladies who posted on the Stage 4 forum (shared some of that here). I even drilled into some of their treatment histories for the double positive and triple positive ladies. I will say that there was a trend that arose that quite a few who did recur had had to stop a certain treatment, or had their first diagnosis before Herceptin was around, etc.

Coach Vicky thank you for your uplifting post! Yes we do need to enjoy life and not worry so much. I don't want to spend whatever time I have left being anxious about what may or may not happen. I do enjoy a treat now and then but my body can't handle the rich foods any more I guess. Although that pork belly sounds delish.....

Thanks for the positivity 😊