HER2 Positive-anyone 10 years out?
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3 for me - I just saw my BS for the 3 year follow up and he said that with my stage and type of cancer, if it's going to recur it does it in the first 2-3 years, and from his experience he thinks, with cautious optimism of course, that if it was going to recur it would have done so by now - so YIIPPPPEEEE.
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LindaKR -
Based on everything I've read in articles, here on these boards, and have been told, both by my oncologist and fellow young survivors support group members, the highest risk of recurrence for triple neg BC is 1-3 years. This same window of greatest risk is generally (I emphasize generally because there is some debate!) applied to survivors who are ER- & PR- but HER2+, since hormone positive BCs, notably ER+ (I guess it gets the most attention/press), tend to recur later, and the risk doesn't fall exponentially after five years...they see recurrences 8 years out, 12 years out, 18 years out, etc.
I note this not to dash anyone's optimism, no matter how cautious, nor to alarm anyone who may be hormone positive, because the reality is that we still know so little, and even hormone negative BCs can recur further out; it's just that with hormone neg BC, we're MORE LIKELY to recur in that 1-3 year window. There are some good research articles floating around that show how hormone neg/Her2+ rates of recurrence drop after the 5th year to about what the rate of recurrence is for hormone positive BCs.
That said, my current understanding is that the 2-3 year 'highest risk' window is determined by one's hormone neg status. If hormone+, excluding the HER2, your risk would be more in line with that of other hormone+ survivors. Of course, I may be wrong. We may all be wrong and confused. I'll try to post some links to research papers later. I write this only so that survivors who are hormone+ and Her2+ don't assume that after years 1-3 they're out of the woods and then, ill-prepared, risk feeling devastated, betrayed or crushed if 8 years, 10 years down the road, or later, their BC returns. Personally, I just live with the understanding that I'm never cured. It can always come back, and so I live my life as if I have the rest of it to live.
All my best.
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I agree with what AnneMarie has stated: Hormone negative (regardless of HER2+ status) tends to recur in the first 2-3 years. My onc confirmed this.
I have also read that those that are er+/pr+ that do recur late tend to be a lower grade. Also as we have all learned, you have a higher risk if you have node involvement and a larger tumor (5cm+).
Here's the article about the late recurrence lower grade. Note this article is 5 years old. I have not read the study. linky
But the MOST IMPORTANT thing you can do to prevent risk is EXERCISE. This is one of many oncologist who will support this based on the research. linky
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Lago,
I'm one of those who is not AT ALL an exercise fanatic, but does share the belief that exercise makes a major difference for us. I think of one particular benefit of exercise as being that it does physiologically force us to both take in fluid and excrete fluid, and in the process that movement of fluid flushes through our body cells and gets rid of the stale buildup of wastes. I did physical work for much of my life rather than doing rote exercises or going to a gym. (To each their own...) I don't enjoy losing so much of my time to exercise, but I still do it because I think it does help.
Going on 11 years out from dx,
A.A.
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Alaska Congratulations on the 11 years!
I told my onc when she asked me about exercise (and was pleased that I do it):
"I hate to exercise but love the way I fell when I'm done!"
If you do physical work you are getting exercise. You don't have to go to a gym to get exercise. I unfortunately have a job that has me sitting at a computer all day so I need to schedule it.
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AlaskaAngel, you may have already noted that you're 11 years out elsewhere in this thread, but it's new info for me. Contratulations! I'm cheering "woot-woot!" for you.
I also do not excersise as much as I should. But, like you, I do a lot of physical labor--mostly in the garden, churning up dirt, hauling pea gravel, bags of mulch, etc. Exercise comes in many forms. So long as we keep these bodies moving...
Iago: Congraulations on nearing the 3-year mark! That is fantastic. I'm doing the "woot-woot!" cheer for you, too!
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Thanks AnneMarie. I'll be posting in late August. I do the NED date as my celebrations, date of my BMX.
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Let me explain exactly what my BS said, he said that in his experience, and he only does breast cancer surgery and has for many years, that in women with my stage and type of cancer that, in his experience, if it recurs it recurs in the first 2 years, 3 at the most, and that since I'd made it to the 3 year mark, in his experience, it's highly likely that my cancer will not recur. He also said that I still needed to be vigilent and watch for changes, issues, etc.... So I felt pretty cautiously optimistic, instead of constantly feeling like the shoe is going to drop. Thanks for your support and encouragement!
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Hi Ladies,
LindaKR if what your BS told you makes you feel good and positive then thats great its whats working for you and I applaud your attitude.
Personally I'm 2 years down the line with ER+ PR- HER2+ and I haven't had any such discussions with either my onc or my BS about my prognosis I figured if I don't have a guideline to go by then it wont be a self-fufilling prophesy ie: in years or months. I suppose it could be just me sticking my fingers in my ears and going lalalala I'm not listening BUT it works for me and thats the point everyone's cancer is individual so are our coping mechanisms what works for one person won't necessarily work for someone else. I cope by use of diet/food I drink a pint of green organic juice daily and take a load of supplements also do a bit of yoga and walking its my way of taking back control, I control what I put into my body, I go for spiritual healing once a week and get in touch with my God by meditation and crystal healing, my mantra is 'Live for the moment' because thats all any of us have either with cancer or not, so far I'm thriving on this.
I know one thing for sure I'm not going anywhere anytime soon I beleive I've got more work to do on this plane of existance but thats my personal belief again being a very spiritual being. So I stick 2 fingers up to cancer and say eff off and leave me and everyone else on this shitty ride alone.
Love and light to all
Sarah xxx
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At my last appointment, my MO told me basically the same thing that Linda's told her. Hormone receptive BC does tend to grow more slowly and can recur many, many years after initial diagnosis. She said that when the BC also has the her2+ component, if it doesn't recur in the first 2-3 years, the risk for recurrence goes way down. I'd never really asked her about this before, she just volunteered the information, now that I'm 3 1/2 years out. All she had ever emphasized before was how aggressive her2+ was and needed to be treated as such. Of course she also said we can never say never. I'm not in denial, but it really did help to hear this from her. I know what we hear from our oncologists doesn't always support the statistics, but doctors see these BC patients of all different types and subtypes and what they tell us is based not just on studies, but on their experiences with the patients they have treated over the years... then again, we all know that there is nothing predictable about this horrible disease.
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This may have been discussed somewhere in this thread, but when do you start counting? I had my surgery Sept. 21, 2011 and was cancer free then. I finished chemo a year ago in April and had my last Herceptin treatment this past December. So when do the doctors actually start the clock persay?
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2miraclesmom it's different for everyone depending on what you are looking at but everyone is a survivor the day you are diagnosed. My BS talks about NED (no evidence of disease) but there are many women with mets that live many, many years and don't reach NED.
I do celebrate my NED date (when the tumor was removed and became NED) because for me that's when I finally felt some relieve. I was finally being treated. I had my mammo in May but didn't get my surgery, my first treatment till August 31st!
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Thank you. I am just wondering if I am 1 or 2 yrs NED. lol Or is it just 6 months? Oh well. I am NED. That is all that matters.
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This was also the first time it had been mentioned to me. Funny because just recently my MO had made a remark (I volunteer in the infusion room so run in to him a couple of times a month) he said, looks like you're cured now - didn't say it tongue in cheek either. Prior to this nothing had been mentioned by either. So I realize that I still have to be vigilant, I eat more healthy, exercise, try to work on stress reduction, stretching, pain management, etc... But maybe this will help me so that I don't totally freak each time I get a new ache, pain, rash, lump or bump - not saying I won't have them checked out if they last more than two weeks, but just saying a little more relaxed. I also, just had to have an MRI of my spine because of back issues, most of which existed prior to BC, so I figured, this is it, it's tumors in the spine - but no, just crappy degeneration and nerve compression - good news - right? They are drawing on their experience, and I trust them both.
A little off the subject, I'm considering a prophylactic MX of the non-BC side, tired of prosthesis (causes pain and LE issues) not have reconstruction, not real into the 1/2 flat look (DD, though I'm finding ways to dress where it doesn't seem so obvious). Anyway, discussed it with my BS, he said now that I'm 3 years out (post surgery only 2 years post final herceptin, and still on AI's). He said that, again in his experience, he's seen a prophylactic that wasn't done at the time of the initial surgery and less than three years later actually trigger a recurrence (he did say he had some studies to back it up too, didn't ask for them), he believes it's because it lowers your immune system, which allows any straggler BC cels out there grow. Interesting, I want to see if I can find more info on it - have any of you heard this before? I recently heard of someone who swears that the radiation caused the BC to grow on the other side, and her doctors didn't tell her no.
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And thanks Jacksnana - and congrats, it just helped me relax a little, at least for this week
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LindaKR I would as your BS if you could read the study of if he has a reference to it. It's still hard to say IMO because they really don't know what causes breast cancer. I mean if that were true does that mean if you had any kind of surgery that it would trigger a recurrence because your immune system is lowered? Does it mean that as you get older and your immune system lowers that your rise for recurrence will go up.
Not sure if I really follow your BS' rational on that. I would also ask your onc.
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Plan on looking into it, again from his experience, he said he won't do a prophy until you're three years out because he's seen it happen in that time frame, but not really after - all those other things popped in to my mind too, Lago, that's why I threw it out here. Maybe it has to do with lymph disturbance???
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Lago - found this on my first search - http://www.ncbi.nlm.nih.gov/pubmed/21935924 Kind of interesting - not sure it's what he was talking about, but interesting.
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I had my exchange surgery, 3 hours under anesthesia 10 months post BMX still on Herceptin, then 4 months later revision & nipple recon, 3+ hours under anesthesia. Would have had the exchange even sooner but I got a bad case of shingles and had to wait 6 weeks.
To be honest my immune system wasn't back to normal for at leas 1 year PFC yet I still had surgeries and I'm still NED. I know I'm just one person but how many others have had the same surgeries and are still NED?
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It does seem that there is some research going on about mets caused by surgery. One of the most recent papers (Heaney and Buggy. Can anaesthetic and analgesic techniques affect cancer recurrence or metastasis? Br. J. Anaesth. (2012) 109 (suppl 1): i17-i28. doi: 10.1093/bja/aes421) concludes:
"Taken together, current data are sufficient only to generate a hypothesis that an anaesthetic technique during primary cancer surgery could affect recurrence or metastases, but a causal link can only be proved by prospective, randomized, clinical trials. Many are ongoing, but definitive results might not emerge for a further 5 yr or longer. Meanwhile, there is no hard evidence to support altering anaesthetic technique in cancer patients, pending the outcome of the ongoing clinical trials."
So, they are saying that it might be possible but there is no evidence and there won't be for a number of years.
Jenn0 -
Very interesting.
When I sat down with the anesthesiologist who would be there for my lumpectomy, he wanted to do complete sedation, but just as he started discussing it with me my BS walked in and said, "No, she wants to be awake during the procedure." Which in fact, I did. So whatever was used, I was awake through it, although a bit less than alert. My surgeon showed me the pieces of breast as he removed them. It was interesting to me, but some others have commented that they would never want to watch.
I wonder if that choice of sedation reduced my risk, since I think the drugs used were different. I'm over 10 years out w/o recurrence, but then mine was stage 1a.
A.A.
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I hate general anesthesia. I was so nauseous after my 7-8hour surgery. Even after my 3 hour exchange. It takes my body (digestive) about 6 weeks to recover from it as well. If I could have done local it would have been so much easier I think. I'm out of it with local too. It doesn't take a lot to knock me out.
I'm not convinced that it causes mets or reccurance (some of that could be from not getting cancer cells that are just too small to see with our current equipment) yet but I am all for have less chemical crap in our bodies.
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hmmm...been reading this with some interest
surgery/anesthesia may "awaken" dormant cells, to me this says that there were cells to awaken. If its not this surgery then something else would trigger it -which is probably why some people reaccur many years later. So that 3 yr window makes no sense to me - if surgery is performed after 3 yrs what is the difference? if there are dormant cells what happens to them after 3 years? do they disappear?
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hi lago nice to "see" you
i hate anesthesia too - i puke every time!
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I'm with you, Lago!
I cannot even drink much alcohol before I'm asleep (the life of the party.... NOT!)
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Nice to see you too rozem. BTW they do have drugs to prevent that. When I went for the revision/nipple recon I told the anesthesiologist and he put something in there. I felt great after. Another friend also has this issue and she got Emmed. I saw her the day after her BMX in the hospital and she was sitting in a chair with no issues.
But I think the 3 year window is because your immune system is weakened by previous surgery/chemo/rads/targeted etc. After 3 years your immune system has strengthened and your body can fight the awaken cells. At least that sounds like what the theory is.
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I can buy that theory, Lago. Most of my counts were fine by 3 years out... except my Alk-phos remains elevated....
However, my WBC and RBC did not return to the normal range until 10 years out from CAFx6 followed by tamoxifen.
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AA I'm not saying I buying it either.
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wow, AA! It took 10 years to get your WBC and RBC back to normal? I'm almost 4 years out and still low on both. Every time I get blood work done, I keep hoping that they will get back to normal, but so far, no such luck.
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Yes, 10 years. I kept asking my onc why they weren't returning to normal and he would just reply that he wasn't worried about it and that I shouldn't be. But the theory that the immune system is weakened and takes a while to fix makes sense to me, and for being the reason for recurrences -- even though so far I don't seem to have had any recurrence despite having low RBC and WBC.
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