TRIPLE POSITIVE GROUP
Comments
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Well, I'm sorry to say that I failed re: a few bc risk factors...had my kids late and the pursuant miscarriages, I drank more often after I finished with breastfeeding around 43 (I nursed for five years! But then I kind of felt liberated and definitely drank a glass of wine a day). I took the pill when younger and also again for two years to regulate my periods in perimenopause. That was not the combination pill which apparently is worse; it was a low dose estrogen pill. I don't believe the pill started the cancer or that the drinking started it, but I believe that them added into the mix definitely increased the hospitable environment for bc to grow. So I believe in my case it was the perfect storm of factors including my unique physiology that made this happen. I feel so regretful of the pill and so regretful of my four years of imbibing before diagnosis. I wish I could let it go and turn back time on taking the pill, getting pregnant a few times after my second child, the drinks...I'm still beating up on myself a year later. Not as often, but I do it.
So toughcookie, you are brca1 or 2? I've not been tested but thought it was rare for Her2 positives to have the brca gene mutation. Now worried I should pay to get it checked. They won't cover it in Canada unless you have family history...
Hapb, I do realize every parenting scenario is different and we just try to find what works in our own situation. It sounds like you are being a rock solid mum in spite of various challenges...
I don't know what diet choices will be best, but I will be adopting several changes. Tough cookie, how do you fast? I have been thinking one day per two weeks, but what do you do
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toughcookie_21, it was one of the ladies on Starting chemo in August thread. We started to discuss chicken soups and how good it must be for the body while going through chemo, and for a while the thread turned into a culinary forum all circling around what we can get out of a chicken. My husband just got me red dates and wolfberries from a Chinese store, I am determined to cook a Chinese chicken soup, the recipe introduced by PauletteK. Cherry
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poseygirl, don't beat yourself up about the past! Especially about things that really aren't in your control ad even the ones that are, you can second guess yourself all the time, but do we really know what caused our cancer? Not really. That's what I meant about if I'd known about the brca2 gene mutation, would I have lived my life differently? Probably not, I'm pretty happy with the things turned out for me (except cancer!) All of my mistakes and missteps have made me who I am today and I wouldn't be this version of myself if I hadnt learned from them. Ive thought about a lot of things that may have caused my cancer. I ate too many sweets for years and ate late at night and didn't think much of it until my weight started creeping up as I got closer to 40.
I don't know if my diet or lifestyle choices are the best, but I do know that I feel better when I don't eat refined sugar, flour and highly processed foods. That doesn't mean I don't EVER have sugar. There's a peanut butter pie sitting in my fridge that I've decided is going to be my treat this weekend before I start my fast for my first chemo on Friday. I have fast for 12-16 hours most days for approximately the past year and have done a few 24-36 hour fasts. I was planning to fast before and after chemo, but the oncology nurse nearly lost her head when I mentioned it. They scared the crap out of me and made me second guess that decision, so now I'm going to do a modified fast based on the fast mimicking diet. There have been many compelling studies done showing that a daily 13 hour fast is highly beneficial for reducing breast cancer reoccurrences. There are also several studies on intermittent extended fasts and how they protect the good cells or put them into a resting state so that chemo can attack the cancer more efficiently as fasting hasn't been shown to alter the growth phases of cancer cells. Dr. Valter Longo is doing a ton of research into this, but there's not a lot of money funding his type of research like there is in pharma.
Edited to add- I'm mostly wanting to fast to possibly reduce the side effects of chemo. I'm so terrified of what chemo is going to do to me and if fasting helps protect the good cells, well then I can assume that the side effects won't be as bad. There is some science and limited research on this. It seems that the medical community is not very concerned with reducing side effects. They just want to kill the cancer. Just my honest opinion based on what I've experienced hthus far.
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I forgot to add- I had also thought that BRCA1 & BRCA2 gene mutations were rare in Her2 positive overexpressed cancers. I did a ton of research into it and actually found some studies that scared me more than helped me; one had concluded that tumors that were slightly Her2 positive were much more resistant to hercpetin; that same study had some loose correlation between brca2 gene mutations as well, which was why it came up in my searches for her2/brca2 studies.
That, along with a lack of confidence in the oncologist who was recommended to me by my surgical onc led me to seek a second opinion at Penn. I ended up meeting with a team of researchers and oncologists at Penn and one of the first things they said to me was that they're researching a connection between Brca2 gene mutations and her2 positive cancers. They said they're trying to prove that its fairly commmon, but because not all patients choose to get genetic testing done, it's difficult to draw any conclusions. They asked if they could use my stats for their research. -
Little far down the thread at this point, but thank you Posey for the info!
FWIW, I am almost two years out from diagnosis, and rarely post anymore here. I check in now and again, but other than the post-chemo afro I'm sporting these days, it's business as usual. My dad passed away the day before my last Herceptin this winter, and one of my best friends suddenly passed away this summer due to an accident, as a result I feel like I haven't had the chance to recover emotionally from cancer quite yet. But then again, as far as cancer thoughts, fear of recurrence, I just don't think of them that often. I keep busy between work, kids, my family, each day is very full. I take more time for yoga and pilates to keep me sane, I no longer feel guilty for taking the time. Don't get me wrong, there are moments when I wonder when the other shoe MIGHT drop. But I feel more at peace, I don't obsess.
So for those on this board who have recently diagnosed, are scared, are reading too much in the middle of the night... it will pass. Feel what you need to fee. But focus on self care, more than anything. As Posey mentioned earlier, kids are super resilient (and in fact, I thank God every day that it was me, and not them, who had to go through this.) Get second, third opinions if you need to - any excellent doctor will encourage that. That was the BEST thing I did.
So if you just started chemo, or were just diagnosed, HANG IN THERE. It takes at LEAST 18 months to get back to your life. If you have kids, think about it as being pregnant all over again and then having a newborn. Your body is not yours during this time, nor are your emotions. This is another life stage (albeit an unlucky one) but you'll get through stronger than ever.
Lots of love.
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Thanks for all the wonderful input, ladies.
Toughcookie, going to check out the fasting. I've read about the 13 hours every day and can do that; it's just a habit I need to commit to. Not that hard to do, really...
Re: BRCA...I really do care about knowing, as I have a young daughter. It ticks me off that they will cover it if you have a family history, but what if I AM the family history? I'm going to push for it and am happy to pay for it. WHen you say there has been a correlation between slightly Her2 positive and Herceptin resistance, do you mean Her2+ at all or lower level Her2+? When I asked my onc's nurse if Her2 can be different levels of intensity, she replied, "no, Her2 is Her2". I had Her2+++ on my biopsy report.
Hapb, thanks so much for the link; I will check it out. My sister gave me one of the forerunning books on foods for fighting cancer, so I'll review your link and hers and like you said - I think it's just important to have a general working knowledge of the good stuff and the not so good stuff. I don't feel it is too hard to make some of these changes - it's all about habit forming. I can pour a glass of lemon water in the morning. I don't need white bread, white rice, pasta, etc. I rarely eat those anyhow. I can lessen my meat intake and when I do eat it, I can make sure I'm eating the best. I thought beans were kind of a no for us? I'll look that up. And what is the verdict on flax? I hear both sides...but I digress.
Fightergirl, you're so right about being up late at night reading. I got into that mode yesterday and then was writing and then couldn't fall asleep till almost 3. I'm 15 months from diagnosis. I was pretty good for a few months early into the year, but then started going a bit downhill again a few months ago. I too do pilates and will be weightlifting with my husband soon. My dragon boat season soon comes to an end.
I'm so, so sorry about all your losses. You have had an incredibly brutal time. I can see why your 'handle' is Fightergirl.
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Fightergirl,
Good to hear from you, though sorry about your Dad and friend. I am also very busy with work and the kids, so I don't think much about recurrence either. Most of the time, I'm just worried about making it through my day. Hope Femara is working out for you!
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ToughCookie, very interesting about Penn wanting to use your stats! Hopefully they can discover something valuable!
FighterGirl, thanks for your words of encouragement, and I'm so sorry for your recent losses!
PoseyGirl, in regards to "levels of intensity of HER2" as described by your nurse, while it seems to be generally reported as a simple yes or no, based on my discussion with my MO, there's more to it.
After reading your post, I researched and found the instructions for the Dual ISH test (which is the one I had) to actually see how the labs score the test. http://www.uclad.com/newsletters/HER2_DDISH_Interp... (Can you tell I'm a data analyst?) It appears that they "Determine the sum of HER2 and Chr17 copy numbers and calculate the resulting ratio" after staining & counting 20-40 cells on a slide.
Basically, the question is how many more copies of the HER2 per cell are there than the Chr17. Per my MO, a ratio of 1-2 indicates a negative HER2 expression (sometimes shown as HER2 +1), 2-4 is borderline positive (HER2 +2 or ++), and anything over 4 is strong positive (HER2 +# or +++). Mine have more than 6 copies of HER2 per Chr17 on average so, yeah, I'm HER2 positive.
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Fleur - this is the information on my surgical pathology report regarding Her2 positivity:
Per 2013 ASCO/CAP guidelines for dual color probes, a FISH result is considered
positive if:1)The HER2/CEP17 ratio is > or = 2.0
- Or -
2) The average HER2 copy number is > or = 6.0 signals per cell.
(My IHC was 2+ which was considered equivocal while my FISH results were positive with 2.0 for the ratio derived from 2.7 Cep17 signals and 5.5 Her2 signals.)
It doesn't seem to jive with what your MO is saying. Did s/he give you any documentation on this? (I like yours better, btw!)
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Lita, my final path report from the lumpectomy shows for my DISH results, HER2/Neu oncogene - Amplified, HER2/CHR17 - 4.3, and Average HER2 Copy Number - 6.8 signals/cell. My MO provided the information verbally on the ranged for how the signals/cell relate to negative, equivocal, and positive, and I now see that same information on my original biopsy report:
Result reference range for ACSO/CAP Guidelines (2013):
Negative / Non-amplified: HER2/CHR 17 <2.0 with an average HER2 copy number <=4.0 signals per cell.
Positive / Amplified: HER2/CHR 17 >= 2.0 OR an average HER2 copy number >=6.0 signals per cell.
Equivocal: HER2/CHR 17 <2.0 with an average HER2 copy number >=4.0 and <=6.0 signals per cell.
My MO equated Equivocal with Borderline positive.
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Tough Cookie,
I always ate a high protein meal the night before chemo. Breakfast the morning of chemo was one egg with a slice of cheese.
I am unsure if I could have fasted! I was starving by the time chemo was over.
To All,
I don't know why cancer came into my life. I will not beat up on myself trying to figure it out. I do know my work / life balance was upside down and I lived 3 very stressful years before diagnosis.
Today, I do exercise more frequently and I am eating better eliminating high carbs foods. I awake grateful to be alive. I focus on being positive. I have moved away from superficial relationships and limit my friends / family to those people who really care.
This just how I deal / live as a breast cancer woman. I think that is all any of us can do ... just do our best following whatever lifestyle works for us be that no red meat or lots of red meat, no wine or only red wine, peanut butter cake or no sugars.
Thanks again, ladies, for all the information and sharing. You all give me ideas to consider.
Vicky
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FighterGirl, sorry for your losses and please stop by on this thread once in a while to encourage us who just have started, this is one of the reasons I am here, for support and possibility to talk to people who are going through the same thing. When I sit in the oncologist office and they say: it goes well for the majority, and I feel that I do not trust them and they cannot offer me anything that could increase survival for my diagnosis. Here, where I get to met all of you, I know that survival is a real thing.
On children, I was told by my GP, who is a few years older than I, that children process the bad news in portions, that their mind is curious and is excellent to distract itself. I see that my youngest is shielding herself from my illness, she is not thinking of it when she is with friends or doing sports, her mind focuses on new tasks and we keep her busy so she has a lot to do. She is so far taking the situation as is, which is: mom got bc, she will do treatment, she will lose her hair (this hair thing seems to be very important to children because it is a real tangible thing to them I believe, I just hope I will not freak out myself, it is starting to shed this week), then mom will be fine because this is what the doctors said. This is me who is falling into the rabbit hole over and over again and dreads the worst scenario. I have to stop, you inspire me. You all are moms in the same situation and you all deal with that your own way and I have to do the same thing, to find my own way to do it. I realize it will not happen over a night or even a year but somehow I have to get there where I accept what has happened and move on living with that. The truth is I am already living with it and I am miserable all the time instead of enjoying the small moments of happiness. In order not to regret it later I have to fins this new life.
Toughcookie, On Her2 discussion, is there any study that lists the cases when and Herceptin is not working? You have mentioned this study, please post the link to this study regarding Herceptin, thank you in advance.
My last question is on fasting, I also had this discussion about fasting two days prior chemo, about normal cells going into hibernation mode with fewer dividing, meanwhile the cancer cells, that cannot slow down, are dividing and chemo, that only hits dividing cells, will go on those cancer instead of the normal. It totally made sense to me but I doubt there is any extensive research because, as was pointed out, no one benefits on that. when you say 13 hours, the sleeping hours are not counted, right? Does it mean a meal in the morning / AM and one at 10 PM? Or only one larger meal at noon?
Cherry
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Posey - Regarding HER2 level and Herceptin efficacy, a subsequent analysis of the HERA trial data indicated that HER2 ratios less than 5 are linked to a lessened response to Herceptin.
The information is summarized here in an article on Breastcancer.org:
http://www.breastcancer.org/research-news/her2-pos-bc-no-herceptin-response
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Here's something to put a smile on everyone's face.
I got my insurance referral for my 3-D nipple tattooing.
The referral reads "durable medical equipment."
And I thought I was just getting two tattoos!
I also posted this in the forum "you know you might be a cancer patient if." It's a really good forum that usually brings a big smile to my face.
Have a great Labor Day to those of you in the US.
Vicky
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hap - what method was used to test your Her2 and what was that result?
About fasting, I have seen others do it, but I think most oncologists will veto it - you also need to watch your hemoglobin levels closely. Chemo has a deleterious effect on ability to produce new blood cells - WBC, platelets and RBC - so by association, hemoglobin. If yours drops too much, you will need a blood transfusion to maintain your chemo schedule. I am not saying don't do it, because I think it may have merit - and I have seen some have fewer side effects, but have seen others have more - it appears to be an individual thing.
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Vicky. Ha,ha. I love your sense of humor.
You will have to let us know how close to real they look when finished.
Melanie
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my 2yo had a much harder time than my 8yo. Even now, at age 5...she has a hard time cutting her hair, and equates short hair with being sick. She's constantly asking me if I am going to die, and wants to know how someone will know how to come get her when I do. She told me the other day she thought she would have to walk to her uncle's house, and she didn't know how she was going to manage it. 🤤 My older child handled things way better.
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Finding it hard at #5 to find a lot of joy in my days. I am not used to being and feeling unproductive.... useless, although I know it's not true, my mind tells me it is so. Things that bothered me before, I find extremely overwhelming now. I feel abandoned by some because they are living their lives while I am stuck in this trap. Neglected by others-out of site, out of mind. I feel like some may think I am faking how tired I really am. I had someone say "You knew it was going to be bad" Ummmm no crap! No crap... how can you act like it's similar to the stomach bug.
In January I had all these plans, a move, a marriage, a new job and then February brought with it BC. Yes, I moved and married but, no new job and sickness brought so much isolation. I know there is life beyond BC and I hang on to that thought, my husband reminds me too when the tears come....he doesn't understand why I am concerned about the estrogen blockers that come next. He hears: The cancer is gone because the breast is gone. The cancer is gone because the chemo will be soon finished. He doesn't get the triple positive and the need to block estrogen. He hears: it is gone.
I research and learn and try to apply it to my future. I take these posts you all write and 'know how you are hurting and feeling somewhat the same. I hear fear and sorrow AND all of the encouragement. I talk to God and ask for grace not only from Him but that I would also give myself grace as well during this. I see St. Judes on t.v. and feel bad that these kids are fighting and so sick and then feel guilty for feeling sorry for me.... like I said, I ask for grace for me, from myself. I need it. Tomorrow will be better.
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Moody Blues ... I hear that you have to touch them to believe they are not real.
I will let you know.
Vicky
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Moody Blues,
My Oncologist NP said that triple positive was the hardest treatment to follow and finish because it is so long. I have read from others and experienced my self that rounds 4 and 5 were the hardest. I did not know if I could finish them but I did finish and so will you.
When someone says something shi**y to you, say this back, "When you had breast cancer how bad was it for you?" That should shut them up. It worked for me.
One time the Nurse Navigator said to me about my 3 pound weight gain after a treatment that it was only 3 pounds. Having seen the size of her ass, I replied, "How easy is it for you to lose three pounds every 21 days?" She shut up. Got the MO to write me an Rx for a diuretic and she never mentioned weight again to me.
If it is one thing that I have learned from having breast cancer it is who my real friends and family are. I count my blessings some people are out of my life. They showed their true colors.
I also count my blessings for those family and friends that did show up. In some situations, I was very surprised. I put effort into those relationships and have discarded those who did not show up.
As hard as it may be to hear what your husband is saying and possibly not understand your fear, I think he is trying to refocus you on the positive. When he says: "it is gone," I think he wants you remember that your cancer is gone. I cannot count the times my husband said the exact same thing to me over and over.
Keeping you close in my heart and in my prayers. You really are stronger than you know.
Love, Vicky
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hap - yes, it appears you are barely above the equivocal demarcation line, and your grade is less intense than most Her2+ tumors. It may be that you get more bang for your buck out of anti-hormonals. Have you decided which one you will be taking?
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lita, thank you for posting the link. I will need to get on my laptop and dig through the journal articles I have saved to find the actual article. I don't open my laptop much these days because it reminds me of work and takes me down a rabbit hole of feeling guilty for taking time off, etc...
There is so much information on so many variables, you could essentially find a study that leads you to whatever result you are looking for. That was a study I had stumbled upon on one of those sleepless nights and it was also around the time I decided to stop "researching" on my own.
The fact is, I don't want chemo or herceptin and I was looking for any data to help me justify not doing it. I don't want anti-hormonal either, but I will do it all (chemo, herceptin and AIs) for my children and because most of the data says that I should. One of the best things that came out of my meeting at Penn was that they acknowledged that they very likely are over treating many early stage breast cancers. It was what I needed to hear to justify my overwhelming desire not to do chemo.
I work in marketing for a medical device company. I've designed and implemented clinical studies as well as bench testing and I know how skewed results can be. In some ways, it makes me more skeptical of "the data" that is out there, but in others, I have much faith in he medical community to do what is best for their patients based on data.
I'm sorry if my comment about weak Her2 overexpression and herceptin's effectiveness caused anyone alarm. I am also weakly Her2 positive. I was equivocal on the ISH test and then +3.7 on the FISH test. It doesn't make me happy if I'm to believe the single study that was done on herceptin effectiveness on lower ratio tumors. I am more likely to believe the overwhelming data that shows that herceptin works really well on Her2 positive tumors. -
Coachvicky- congrats on the tattoos! I wonder if insurance will pay for me to get flowers or something wild tattooed on my foobs instead of nipples. Lol.
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the study that is cited in the bc.org page that lita referenced is the same one I had read early on:
http://jamanetwork.com/journals/jamaoncology/artic...
Ironically, I did a quick google search and turned up this study which says that hercpetin is less effective on early breast cancer with HIGH Her2 ratios:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0159176
Like I said, if you dig deep enough you will likely find a study that concludes exactly what you want it to. This is why I thought it best to stop doing my own research. Too much conflicting data!
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tough cookie and Hap -
Interestingly, the study that referenced high ratios not responding to Herceptin would not have included Hap or myself because the ratios were based on pre-2013 guidelines. We both have sub 2.2 ratios which was the cutoff for Her2 positivity at that point in time!
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Lita / ToughCookie / Hap / SpecialK, now I'm wondering if I need to bring this up again with my MO since I do fall in that ratio range at 4.3 and have 97% ER+ / 50% PR+. I've still recovering from my lumpectomy & haven't scheduled any treatments so far since I still have my surgical drain so I'm in this small window of time to question & change the plan if needed if there is some significant evidence against Herceptin & Taxol for me. It's almost cruel that we have to make decisions like this on top of the emotional & physical stress we're under and the clock is ticking!!
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I just noticed another thing in that BCO article - it states that Herceptin was approved by the FDA to be given "either alone or as part of a regimen with chemotherapy" yet everything I've seen thus far only has it being with chemo. Can it be given alone? My MO said if I weren't HER2+, I might not need chemo but had to have it in order to take the Herceptin since I am.
Is anyone aware of Herceptin being prescribed alone? I've seen one user who said she was on it alone because she couldn't tolerate the Taxol, but she was initially prescribed both.
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Vicky, Thank you for your encouragement, I felt overwhelmed today and you (once again) made me smile. I got a kick out of the large rear end comment.
Hap, Your strength after going through all of your cancers is amazing! Yes we will get through this, it just takes patience and may I add, support from our ladies here. No one truly understands unless they have cancer or some other life threatening disease.
On a side note ladies, I got out of the house today for an hour and realized how much better my mind felt with just a small dose of being outside and around others. I really needed to be outside of my mind in order to focus on the other things. I am a glass half full kinda girl BY CHOICE and in this party with chemo, I lost my edge or focus or whatever you want you call it.
Once again, thank you for all of your kind words, I feel like a part of an enormous, strong team with you all helping me to walk across the finish line.
Melanie
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Then when you add in this study about genetic testing that also describes a subset of HER2+ that appears more ER+ driven than HER2+ driven, it starts to look like they may be on to something. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41619...
Or, as several of you have pointed out, there's just so many conflicting things out there, it's easy to pick the ones that match your beliefs. Good old confirmation bias at work!
What's a girl to do?! Sigh!
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hap - your IHC testing initially was just north of equivocal - meaning that you had non-uniform or weak appearance in at least 10% of your cells. This caused you to need reflex (confirmatory) testing by FISH to confirm either positivity or negativity. FISH testing is more expensive and resorted to usually when IHC has yielded equivocal results. That test indicated 6.1 Her2 copy number - which is an intermediate score as far as copy number goes, but does push you into positivity for purposes of the test, and a CEP17 of 2.9 - positive for Her2, but still on the lower end of positives. I just looked at this study, linked, that indicated good DFS for lower ratio patients treated with Herceptin and who are >20% ER+.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0159176
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