TRIPLE POSITIVE GROUP
Comments
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Good question Cherry-sw. After 6 rounds of TCHP with a PFC and upon finishing the 12 months of Herceptin, my chance of recurrence was said to be 10 to 15%. I plan to revisit this topic again. Perhaps the percentage of DFS goes up at the 5 year mark while having done an anti-hormonal therapy. A giant flow chart with footnotes for triple positive BC would be nice. If this, then that. When I was full of steroids and reading this message board late at night, I would take notes and have to keep lists of questions. You learn something new everyday.
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Suburbs, you are so right about learning. I have to start cathegorizing this information. Unfortunately, I only have my work computer, have to buy a new one
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Cherry - According to a HER2 researcher who was nice enough to answer my questions, yes, it is possible to be HER2 positive and Luminal A, even with a K1-67 of 25 like mine. I really thought he was in lala land until the article SpecialK posted indicated the same thing.
But the percentage is low and so the issue of possible vs. probable comes into play.
Medical treatment is based on current knowledge and these are relatively early days for subtype research. It's possible that in 5 years they'll discover that we might not have needed some arm of treatment. But if we've had it and survived, will we really care, as long as the treatment didn't cause difficult and long term problems for us?
Regarding the article I posted about HER2 subtype research I was just using that as an example of the type of studies that are currently in the works.
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cherry - I believe that the basic message of the article was that for Luminal B folks the addition of Perjeta was helpful, and that there is a further delineation of subtypes for those who test Her2 on IHC or FISH.
This is not in the article, but I believe the increased percentages of help provided by adjuvent Perjeta are pretty slim per the Aphinity Phase II trial, and further the ER-/PR-/Her2+ subset is seen as the most aggressive combination - both due to the aggressiveness of the Her2+ aspect, and the fact that there is no anti-hormonal assistance for these patients that provides protection ongoing.
Part of the issue for triple positives and recurrence is the question of what is driving any recurrence - is it the Her2+ part or the ER+ part. Most Her2+ driven recurrences happen somewhat quickly, within 2 years, from treatment, or less. Most ER+ driven recurrences happen tend to happen within the 5 year mark - so potentially could be concurrent with Her2+ if within the 2 year mark, but the risk of recurrence for ER+ never goes away beyond 5 years, just lessens. Additionally, there is the question of whether or not Tamoxifen is as effective for those who express Her2+, and whether it or the three aromatase inhibitor drugs, work effectively on us as individuals. This is tied up in how one metabolizes these drugs, and the genetic characteristics of each tumor. At the 5 year mark I had another assay done on my original tumor - the Breast Cancer Index test by Biotheranostics. This assay indicated that I had a high risk of recurrence coupled with a low benefit from aromatase inhibitors. This combination happens in only 10% of tumors tested by this type of assay. Because this test was done on my original tumor it means that I was most likely receiving low benefit all along that 5 year period. I asked my MO at that point for a PET scan to take a look at what my current situation, and while it came back bi-laterally abnormal on the chest (long story - not cancer, but 4 different types of inflammatory process remedied by an already scheduled reconstruction surgery the following week), there was NED anywhere else visualized by the scan.
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Hmmm.....this % recurrence debate seems to be occurring among ladies who are Stages I and II. As a Stage III person, I just did "the works" -- chemo, surgery, radiation, a year of Herceptin, and now an AI. I didn't feel like I had much choice about treatment, and never worried whether I was Luminal A or B.
There were 30 women on my chemo board in July 2014. One has passed (she was Stage IV when she began chemo in July 2014). Three have recurred and are now Stage IV. All three were Stage III, and two of them were ER-/PR-/HER2+. No one who was Stage I or II has recurred (yet).
Of course, breast cancer patients who are Stages I and II do recur, but it is more unlikely. And, of course, you want to make the best treatment decisions for yourselves. But, all we can do is reduce the risks of recurrence, and none of us can be sure what our future holds.
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HapB, I want to process all the information but my brain is not as effective as it used to. Today I was about to make a salad dressing, a new recipe, five ingredients. Usually I look at the picture once or twice and I remember it, not the list, the picture. Not for a week but long enough to make a dressing. Today I went back to my computer several times, was just amazed that could not remember how much and of what. Cherry
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somebody i know er +, her2 -,with affected lynph nodes, who opted out of anti hormonals amd went to an immunologist instead . she had a blood test and sent the sample to Greece . appparently her cancer cells were "high", so she is receiving vit.c infusion to supposedly "kill cancer cells"... i dont know what blood test that was ... i was thinking tumor markers but why send it to Greece?...
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SpecialK, thank you, I just wrote down three questions for my meeting on Wednesday based on your answer. The way you explain I always understand everything. The first oncologist I met told me that they do not do any delineation in terms of Luminal B or Her2 overexpression. When it comes to Her2, he said, they treat it as Her2, the only difference is that they have hormonal treatment for those who are ER/PR+. Which is correct but I wanted to discuss the Luminal subtypes which he clearly did not. Cherry
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Lita, I am mostly worried that I am not getting enough treatment. I have very high Ki-67 and I red about a Japanese study that shows correlation between Ki-67 and recurrence when over 45% had the highest recurrence risk. So, I just think shall TP Grade 3 with high expression of Her2 have the same treatment as TP Grade 1-2 with moderate expression of Her2 (those who are Luminal
? If chemo kills the cells that are dividing at the moment the question is wouldn't it be better to give those with high Ki-67 a stronger chemo? The second oncologist I met told me that they do not know, they maybe are over-treating me already. In that case they are definitely over-treating those with Luminal B type. But I would rather go over than under. I also asked about why they choose Taxol and Herceptin as a standard treatment and it turns that it all comes from that study conducted by Dana Farber, 406 patients etc. No other studies similar studies have been done after that. And the results they have published are from 2014. When I asked the oncologist, the second one I met, about whether the figures are the same as per 2017, she told me that some people do continue to recur in this study but no they did not publish any recent results. This is what I remember of our conversation even though I cannot rely on my memory right now, or if I got it right. This study does not either make any differentiation on Ki-67, of those who recurred what characteristics did their tumor had? I know I am trying too hard and the significance of Ki-67 is debatable but there are studies, and I cannot help it than just reading those. Cherry0 -
ElaineTherese, do you mean that you would not worry about recurrence if you were Stage 1 or 2?
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Hap, Elaine - I also think the point in time one is diagnosed with BC influences one's viewpoint. We read what's current, and current research is somewhat fixated on subtypes and what part they play in treatment response. Personally, I wish research would also focus on finding treatment without the toxic side effects!
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Cherry,
I think we all worry about recurrence. If I were Stage I, I would worry but would do so from the perspective that my chances of recurrence were relatively small. That said, I can't tell you how much to worry because you are you and you may have a different level of anxiety than I do.
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Cherry - I'm wondering if age influences our concerns about recurrence vs fear of treatment effects on quality of life. When I was your age I also had an 11 year old and I'm quite sure I would have said screw the side effects, give me the Taxol! The idea of not being around to watch him grow up would have been intolerable and I would have paid any price to have that.
But now it's different. I thought I had at least a good 10 years before I would start feeling the effects of age on what I love to do. I expected those ten good years, and I want them! I don't want to spend what's left of my life dealing with the aftermath of chemotherapy. What I reallywant is to wave my magic wand and have this all just... disappear..
The point you raise about not knowing about the K1-67 level of the recurrences is a good one. But it is also possible - and perhaps likely - that the study grouped people with a variety of variables that makes the result less meaningful to someone with your type of BC. My breast care navigator told me to steer clear of general Her2+ stats for that very reason.
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Lita, all you just said, true, true and true. I told my mom and my husband that when I think about what I am facing I get sad and devastated but realize that if everything goes wrong this is not much I can do. I had my life, it was sometimes good and sometimes not that much, I experienced many good things and I am grateful.. My eldest daughter is a grown-up, still young but in university, she is not small but her sister.. and this is when I get a complete cognitive dissonance, that it is so wrong, it is a catastrophe, it cannot happen, give me anything I will take it. I walked in the forest today just crying and thinking about this. I cannot any longer think of how I will be feeling later in life, this dx has turned my life upside down. Cherry
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Cherry, my heart goes out to you. It's unfair that any of us have go through this but it's especially unfair for younger women.
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ElaineTherese, the statistics cannot apply to one particular person, a smaller chance is not making it any easier for a person who has recurred. And nobody knows who will and who won't. And it is very individual, some people have large tumors, nodes affected and never recur and some people have small tumors and no nodes and still recur and once again nobody knows. Because nobody knows how one's body will response to the treatment and how the cells will behave, they have emerged somehow and lured the immune system, this is a highly complicated process and yet they are there, this is serious stuff we are dealing with. I probably did not live the most healthy life before bc but I do not think that I mistreated my body that much it could not manage this illness. I still have not come to terms with my diagnosis. Cherry
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Cherrysw , it is completely understandable that you have not come to terms with your diagnosis. It's still early days. Researching and asking questions helped me come to terms along with family and friends and Prozac. It's a long road made longer when you are in the triple positive club. It's like a marathon and we get extra miles added at the end that the other kids don't have to run.
While statistics are good to know, I too want to throw eveything I can endure at this cancer even if the improvement in DFS is 1%. I'm not sure I can comply with the "no meat, dairy, soy, alcohol, white bread or rice" rules for survival, but, one never knows. When I was at your treatment stage, I could not imagine myself further out after treatment and surgery. While I am still recovering, every single day gets better and better and the dark days seem like a very long time ago even though it's only been months. You will get there and it will be great to feel great again.0 -
suburbs,
why no rice and no white bread? thanks!!xoxo
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Thank you Lita, i think all lives matter and every age has its own pleasure and expectations, but I feel like it is not about myself. And the awful thing is there are so many young women facing the same thing.
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Suburbs, I really hope so, thank you for encouragement. My tumor was missed in January, it might have been removed earlier, when they told me that everything was fine I cancelled another mammogram I was called for telling them that both my mammogram and US were clear. I will also go for this extra 1%, this is why I asked my oncologists whether I can get stronger chemo but they said no. I see you did Taxotere, was is something your doctor recommended? Did you have to choose between Taxol and Taxotere?
When I got this diagnosis I stopped eating like at all, no bread, minimal carbs, no eggs, no diary, no meat, fish sometimes, no sugar. I lost 6 kg in a month. Now I eat because my body needs protein to build new cells but I will definitely revise my diet after treatment. i will meet a dietitian in two weeks, so far my oncologist told me I should eat a little of everything.
Cherry
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Cherry, It's ok that you haven't come to terms with your diagnosis yet. There's no set timeframe for grief. I still remember those early days. It was like a nightmare that I couldn't wake up from. The first ten seconds of the morning were great until I remembered that I had BC. How in the world did that happen!?! I was never afraid of doing chemo. I was afraid of not being around to see my children grow up. Diagnosed at 41 with a 9 year old and 7 year old twins.
I think it's important for everyone to remember that there isn't any one thing in particular that causes BC. It's a combination of things. There are plenty of women, on this thread, that were young, perfect weight, good diets (vegetarian/vegan), no birth control, no drinking, and plenty of exercise that were diagnosed with BC. There are also just as many women who are 100 pounds overweight, no exercise, drink, smoke and eat plenty of fat filled foods, that never develop cancer. I believe in moderation. Me...Diagnosed at 41, breastfed all three kiddos, 5'6" and 125 lbs, good diet, rarely ever drank, and stayed active, yet still diagnosed with BC.
It does get better. That's really hard to imagine in the beginning but slowly things will improve.
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A year and a half after getting a mammaprint, surgeon handing results to me (not done by MO) and telling me she could not offer any interpretation of it (but she ran the test! ) I still wonder about the results. That was my first doctor in the "journey", who I subsequently left for for another surgeon. That test caused so much anxiety and frustration, as the surgeon wouldn't addresss it, the MOs I consulted with after that would not use it. It listed me as luminal B and HER2- .. confusing ! My HER2 by pathology was very weak positive. I did the chemo and herception, so that is done already, but I will have lingering doubts about what it all means. Frustrating and I have been planning on contacting Agendia when I feel more stable and relaxed post-treatment.
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Mommato3 -
Interesting that you said you weren't afraid of chemo, but afraid of dying. I'm the exact opposite, but probably because we're at different periods of our lives. Not that I'm unafraid of leaving my husband, daughter (26), grandkids and the rest of my family behind, but I was stage 1 and the tumor was 1.3 cm. If I didn't have the HER2+, I would have been fine with radiation and hormone blockers. I was afraid of the biopsy and the lumpectomy, and now I'm afraid of the Radiation, the chemo, the ports and catheters, of peripheral neuropathy and losing my hair...But I'm not afraid of dying. My husband says I'm not afraid that I'm GOING to die. Maybe that's the case...
I just had my first meeting with the radiation oncologist, and it did freak me out a little. I still have to wait two weeks for my genetics assessment before they start, just in case. Thank you all for listening
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Ladie, I'm not triple positive but I love this thread and I followed you gals for awhile.
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HapB, my daughter just moved in with us in January to finish her degree,and I never would have guessed how fortuitous this would be. She took the diagnosis harder than anyone, but she's been a tremendous emotional support.
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Hey Momma, I was diagnosed at 47 (bit older than you
) with a 10 year old and 7 year old. Similar . As a parent to young children, this has been terrorizing to me; I won't lie.Cherry, I was diagnosed in June 2016 and am still struggling to come to terms with this (see above). So there isn't a set timeline on that. Feels like just a few months ago that I got that call. And now with just one Herceptin treatment left, I'm so scared about being unleashed from care.
hap, may I ask where you have found the 15 percent recurrence versus 25 if you do nothing? That's with stage 1, then? I'm surprised at the 15 figure. Sounds high to me for Stage 1...but nevertheless, I understand your comment that it's a harder call re: treatment. We stage 3'ers really have a no brainer call on that if we buy into conventional medicine. And yes, there are after effects. I am a pretty fit person and I feel 30 years older in my joints. I have the beginnings of lymphadema. It's hard.
I don't think Elaine was suggesting you shouldn't worry about recurrence; I think she's trying to encourage you that your outlook is highly favourable. When I sit here at Stage 3a, I know our recurrence stats are worse than yours and I so wish mine had been caught earlier.
Elaine, in your chemo board, are there quite a few stage 3'ers? I mean, I hope most aren't recurring??
It's all relative, but we all need to remember we all share this disease. Once it's invasive, it's invasive. I am just trying to pull my act together and do all I can. We all share our fears and just may be at different points with respect to acceptance and confidence, etc
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Posey - Hap and I havesimilar tumors and are close in age. I'm not exactly sure where her stats came from but the Predict calculator gives me an 85% survival rate at 10 years with all treatment arms being completed and a 78% 10 year survival rate with no adjuvant treatment.
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well ladies, here are a few stats from this site from the stage 4 board. Out of 187 people that shared their initial diagnosis before progression (and I did not include de novo in this 187):
8 % were DCIS
18 % were stage 1
41 % were stage 2
32 % were stage 3
There are many variables to consider such as subtype, date of initial diagnosis (I.e. Could have been less aggressive or contemporary treatment), the treatments they chose, etc. So there you have your figures right there.
The higher percentage of Stage 2's turning to stage 4 tells me that differentiating between stage 2 and 3 is probably gray in many cases (i.e. Probably many 2's are understaged and 2b is really similar to 3).
I just figured I'd go straight to the sources. Stage 1 ladies, I didn't evaluate closely, but very few if ANY of these were triple positive. Hope this helps
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Just presenting as there has been talk about recurrence figures. Reinforces the difference between the stages. But also suggests that treatment for stage 1 is important.
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posey - interesting numbers, thank you for sharing. About how many from each stage do you think we're triple positive
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