TRIPLE POSITIVE GROUP
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bucky I grew up in the northeast. Actually the south shore/Boston area. If you research their is a 20% higher incidence of breast cancer in cape cod (grew up about an hour from Falmouth). Thing is my sister doesn't have BC and my mom now living on the cape for over 10 years also doesn't have BC. We really don't know what causes this. They think many things come into play not just one thing.
Yes I do believe we need to do what we can but we can't let this drive ourselves so crazy that we don't enjoy our time that we fought so hard to get back. I'm not saying go and smoke a cigarrette and drink a couple of glassed a wine a day but seriously we can't control everything.
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lago Well said!!! I agree totally!! We have to live life and enjoy ourselves as much as possible.
We could really drive ourselves crazy by trying to eat, drink and do the right things every single day of our lives. That in itself, causes too much stress, which they say causes increased risk of cancer. 0 -
Actually I blame my breast cancer onthis evil boss who gave me so much stress 6+ years ago. My BS said my cancer started about 5 years ago… that would be about 1.25 years after I started working for that a$$hole.
Just another reason to think he's evil. 0 -
Went for a Onc visit today. He said the first two years are "usually" when HER2+ makes a comeback (if it's coming)....but with ER+ women, the risk for it coming back goes up every year after tx..and he showed me a graph with a rising hill on it.
I didn't like hearing that but oh well.
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So wait... Even with her2, every year out our risk increases for recurrence? So it doesn't mean anything to us to clear 2 years? Sigh. That's really disheartening.
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TonLee - I don't understand.0
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Omaz have your read these:
http://www.gaeainitiative.eu/word_page/BC_Recurrence.htm
http://www.lifeabc.org/risk_recurrence_more.html
http://www.reuters.com/article/2008/08/12/us-cancer-breast-idUSN1248209720080812I still say every case is so individual. Does it make a difference if you are highly ER/PR+? Is it local or distant recurrence? I know there's woman in my building that had breast cancer back in the 70s. I don't know what her biology was but it sounds like after 30+ years she would be considered cured. I'm not sticking my head in the sand but I am not going to assume I'm doomed. Statistically I shouldn't have breast cancer at my age etc. Why not think I'm one of the ones who gets cured? Until there is an issue I'm going to assume NED.
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Well said Lago I will take your approach!
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I have all the doom and gloom prognostics...high ki, lots of nodes, lymph/vascular invasion, and multifocal, multi centric. However, I thank God for my dear friend Maria...who got her triple positive 11 nodes positive diagnosis about 7 years ago. She took me by the hand, pointed me on my current organic, vegetarian, paraben free, exercising nut path. I'm not always good at it, but I try. Mostly out of fear!!
Thanks Lago for the links. I like the last one best. If you google, there is another study out there that says that triple positive that doesn't recur the first two years is actually a better prognosis than a few other types. I think I need to make a big positive poster of all these studies to pull me off the occasional ledge!!0 -
Lago - I had seen this and it doesn't seem the same as what TonLee's onc was saying. Here the risk goes up for the first 3 years and then decreases. 0 -
Omaz she said risk goes up every year. Yes the first 3 are the highest risk but then decreases. That's why my on wants me to keep my port 2 more years after finishing herceptin (total of 3 years). I have a 16% risk of recurrance in the next 10 years according to the info she first gave me. I'm still not going to worry till I need to worry.0
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I found this too which shows Her2 vs nonHer2 with highest risk around year 2 for HER2
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lago - I don't think the risk of recurrence goes up every year...I must be missing something here.0
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TonLee posted:
"He said the first two years are "usually" when HER2+ makes a comeback (if it's coming)....but with ER+ women, the risk for it coming back goes up every year after tx..and he showed me a graph with a rising hill on it."^ that's what I'm talking about. No I don't believe the recurrance risk goes up every year after year 3. It's what TonLee posted.
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Lago - Sorry Lago, I didn't mean to say that you posted it! I was wondering what TonLee's doctor showed her because it didn't make sense to me. the rising hill graphs are cumulative incidence graphs, meaning 15% of those that started out have had a recurrence by 5 years, add some more recurrences and 20% by 10 years etc. It's cumulative. My understanding of those graphs is that the risk of recurrence is not 15% at 5 years and 20% at 10 years. The risk of recurrence per year is much lower and I think goes down with time even for HER2+/ER+ women after that initial hump at 2-3 years.0
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Omaz that's my understanding too.
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Hi girls. This is good info.. a bit confusing and can be a bit scary but it is good to be informed. I just recently heard about a new drug Affitoxin for Her2 +. I understand it is about ready to go to clinical trial. Does anyone know anything about it? I am hopeful that by the time we need to worry about recurrance we will have a miracle drug that will cure this awful disease. That is what I am praying for.
P.S. Lago-I don't understand the graphs all that well, but what your saying follows what my MO explained to me. Recurrance is cumulative over years and doesn't follow the same recurrance rates as other BC's. My onc said the same thing about my port- it should stay 2 years because of recurrance.
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It is not like me to take the ostrich approach to much in my life, but I have to say that is where I am at on the recurrence topic. If I can't control it I don't want to occupy my time thinking too much about it. Am I alone in that?
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SpecialK - I worry about it. I don't feel like I have much control over it though. I do what I can but the whole cancer thing seems rather random in the sense that we don't know what 'caused it'. Many women here ate well, exercised, relaxed, basically did everything right and yet here they are.
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omaz - I worry about it, but sort of abstractly. I haven't discussed it with MO yet, I think because he can't predict it, can only give me stats. I have known many ladies with BC, some recurred but most have not. Yes, it is so random - even the recurrences. I plan to do all those "right" things, and I did them for the most part in the past too, but beyond that who the heck knows!
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SpecialK--You're not alone. All the recurrence info is based on stats and stats aren't all that useful to me as an individual. If something increases a recurrence by 80%, what does that really mean to ME? Am I doomed to be one of the 80%? Somebody must be on the 20% side so why not me?
There are lots of reasons to eat well and live a healthy life, but I don't think it's iron-clad protection against any disease. Like Omaz mentioned, too many women do all the right things and still end up with recurrences. My mom had ER+ BC in 1989-90 and has done little more to ward off a recurrence than to never miss her annual mammo. It seems to me that we might be able to "influence" our chances for recurrence but we do not control it.
The experts who spout the stats don't really know as much as we'd like them to know. There's so much yet to learn. All we can really do is live our lives as well as we can. We shouldn't punish ourselves with additional stress because we don't like being vegans or can't qualify for Boston.
We *can* try to reduce our stress levels and that will not only influence our chances of being hit with many diseases but we will be happier to boot. We can start by not over-rotating on every set of stats that gets released.0 -
pasmith - excellently said!
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Christean, I heard that the drug you mention worked about 80% of the time in preventing recurrence in her2. Instead of working on the receptors, as herceptin, lapatinib and neratinib do... it works like a smart bomb. The her2 cancer cells gobble it up, then are blown up. Even with a fast tracking, we are looking at 5 years of it getting to market....in the UK. Its not even ready to go to trials in the US.
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I am with you Special K. I haven't heard anything specific number wise about my risk of recurrence from the onc. It's not accidental. I can't do anything about it, so I don't want to be scared by it. She told me I was at a high risk of recurrence because of lymph nodes, size of tumor and grade. But that is specific enough for me. Haven't had surgery yet. That's August 17. She said she'd go over pathology report with me after surgery. No one has gone over the pathology report from the biopsy with me. I haven't asked them to. I did ask her if she thought I was making the right decision to get a uni mx and not a bimx. She said I was at a 30% higher risk to get breast cancer in the other breast since I already had it. I should have asked her what absolute risk this was because 30% is pretty high, but if it's gone from 10 to 13, I can live with that. It would be much harder surgery since I'm getting DIEP to do BI. None of the doctors thought I should do that, so I am sticking with it. Also eating better, excercising more, got rid of my non-stick pans, got a water filter, thinking about getting a better water filter on the whole house rather than just on the fridge. I'm doing what I can, but I am sticking my head in the sand as far as any scarey numbers.
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One thing to remember is hormone positive that isn't HER2+ is usually slow growing. Chemo as we know if more effective on faster growing. Chemo isn't always given or may not work on those slow growers. Also I think because it is slower growing it appears to take longer to recur if it is going to recur. That's why the biggest risk for us, being HER2+ and on the faster side of proliferation, is in the first 3 years.
August 31st makes makes 1 year NED (surgery date /first treatment). I'm almost 1/3 third past the highest risk time.
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Oh, your anniversary is really coming up. A little early, but a big CONGRATS! And thanks for the info, it's very helpful. I guess that is another bright side to HE+. I think I will relax a lot after two years with all this info. Of course, just when I forget about something and relax seems to be when the other shoe falls. LOL I just can't stay positive for long, can I?
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Thought that I too would chime in on what my onc said regarding recurrence and Her2. He said that once you pass the 2-3 yr mark, the odds drop significantly in our favor.
Also, I am curious if herceptin has been around long enough to have reliable stats for the long term. I would think that this would be an added benefit to our stats as well. At least that is what I am going with!
V
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I don't intend to re-ignite the conversation, but doesn't the first chart posted by Omaz say its for "untreated patients"? Very small type, tho.
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Wendy - do control++ and it should get larger in size. control --- goes back
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Sorry to be so long getting back to this thread....this is my absolute busiest time of year.
Ok. This is how the conversation with my Onc went...
Me: "Ok. So what's my next milestone? I've read and the RO confirmed if I make it to 2 years without recurrence the chances of it coming back start to diminish."
Onc: "Well actually that is generally true for HER2 positive women. But unfortunately you're also highly estrogen positive, and the data show the chances for recurrence actually increase every year after treatment. This is why you will take Tamoxifen for 5 years, and possibly longer...we're looking at studies now that show some benefit for women to stay on estrogen blockers more than 5 years, up to 10 years out. You will always be at a higher risk for recurrence."
I looked skeptical and he pulled up a graph on his computer and said, "This is the rate of recurrence in women after treatment who are estrogen positive (rate of recurrence goes up the hill for women with prior ER diagnosis).
I didn't ask him what graph it was, or even what study because I was on my way out when this all came up. Actually I said it jokingly...expecting him to give me a milestone...but he wouldn't. He said I will always be high risk for recurrence, especially when/if I go off Tamoxifen.
I will ask for clarification next appt. Sorry if that was confusing....it was to me also...which is why I posted it here.
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