HER2 Positive-anyone 10 years out?
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My blood tests didn't return to normal until I was almost 3 years post MX, so that would make sense to me too. Just read another article on Choice of Anesthetic during MX might effect the long term pain - http://www.newswise.com/articles/choice-of-anesthetic-affects-risk-of-chronic-pain-after-mastectomy
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My bloods came in all within normal range at my last appt three weeks ago. Thatbmakes it 1 year since the end of "hard chemo" and 3 months since the end of Herceptin. I never realised that it could take much longer than that.
I was told in my college biology class, and by my PCP, that your blood cells have a 3 month turnaround which seemed to be true for me.
Jenn0 -
I know my counts were low when I was 6 months PFC and on Herceptin. My PCP said that was to be expected.
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I am 11 years out. Diagnosed with HER2Neu+ in 2002, stage 2B/3A, 5-7 cm tumor. Went through chemo (A/C, Taxotere and Herceptin), then surgery, then radiation. Herceptin had just proved useful in Phase 3 studies on humans, and I credit my life to getting it. Had a number of lymph nodes removed--that was the worst part. Taking Arimidex afterwards was bad, too--my bones hurt, I had no energy and ended up for a short time using a cane and having a handicap sticker for my car. I am perfectly healthy now at age 71--i swim, work out and enjoy a range of pysical and mental activities. There is hope! Hang in there.
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NortheastLady,
What a wonderful post! Thanks for sharing your story.
Did your overall health improve once you stopped taking the Arimidex? I have many of the symptoms you describe and love the thought that stopping Letrozole next year might improve things.
So happy to hear that you're doing so well. Best wishes for continued good health and happiness.
Ann
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NortheastLady Thanks for posting and a big congeratulations! Rarely do I see us big tumor gals (6.5cm: 5.5cm-IDC 1cm-DCIS) who are also hormone positive posting in these threads. I'm almost 3 years. See you in 7 years ♥
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NortheastLady - You are just what I needed! Congratulations and THANK YOU!!!
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Northeastlady- THANK YOU!!
Lago I am also a "big tumor gal" - 9 cm (yuck- it was hiding in dense breast tissue). But I am just a newbie "NED", so looking for inspiration on this post.
I did just get some cool info though - our top breast oncologist told me yesterday that she treated 20 women with her2+ tumors in the initial herceptin neoadjuvant therapy trials (TCH), in the early 90s. Only one has relapsed, and it was a new tumor coming up years later, in the breast that had not been initially affected. Also successfully treated with herceptin.
I felt so much better after she told me that, I think I soared out of the cancer center. So I wanted to share.0 -
sciencegal - OH THANKS so much for sharing that one! That sure makes me feel better!!!
I had a 6 cm tumor. I am soaking all of this in. Thanks to all!!!
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Hi Denise, crazy that our tumors could hide out like that until they were so large, isn't it? I didn't know we were in a club called "the big tumor gals" until Lago posted that. A distinction that I did not want! But rather amusing.
Thank GOSH for herceptin, is all I can say.0 -
I haven't made it ten years just yet, but I am going on my eighth year so far without any problems. I was on Herceptin for one year after completing four treatments of A/C and twelve rounds of Taxol. I was stage 2 IDC and Her2 positive. For my age I only have normal aches and pains and see my oncologist once a year. Two years ago he made the remark "If anything was going to happen, it would have before now"--music to my ears. God is good10 -
dottie70 - Thank you so much for posting! Sounds like our diagnosis and treatment has been the same - I started the herceptin with taxol after completing four of AC in December 2011. I'm still trying to finish the herceptin as my ejection fraction keeps dropping and they keep making me take "breaks". I have 13 more to try to squeeze in before this December if my heart will behave. Thank you so much for the encouraging post!
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Dottie- thank you!!!! Your success is music to MY ears!
Julie- good luck!
It is great to read all these posts.
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JulieLynn and Sciencegal, I rarely ever visit this website any more, but a few years back I was constantly looking for anything positive that I could find concering Her2 positive BC. I learned to skip the negative and hunt for the positive feedback from other ladies who were in the same situation as I. Now it does my heart good to know that I might have made someone's day by telling them that there is HOPE and a light at the end of the tunnel of the scary ordeal of BC. God Bless and everything is going to be alright
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Hey ladies, I also hada large 6.5cm tumour which was masked behind a massive cyst and dense breast tissue the only thing that alerted me to the fact that something was seriously wrong was a pesistant itch to my right breast. I'm only 2 and a half years down the line and have spread to both lungs but I'm being kept stable on a concotion of tamoxifen/herceptin. Love and light to you all sarah x
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Keep it going sarahlou. It seems they keep coming out with better and better stuff for HER2+
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http://www.roche.com/media/media_releases/med-cor-2013-02-22.htm
Hi Sarahlou- congrats on being stable. I sure wish you the best.
My BC doctor told me about kadcyla which is Roche's newly approved herceptin-taxane direct conjugate, it is now approved in the US for metastatic her2+ disease and is being considered by the EMA, if not already aproved. I linked a fairly recent article above.
This takes the cell-killing drug straight to the Her2+ cell. It sounds really attractive to me. I hope it gets approved in the UK soon, if not already, maybe ask your doc?0 -
Thanks Sciencegirl your true to your name, thanks so much for that info so encouraging, as ususal UK is behind you guys in the states but if its in the US it will eventually filter through over here in the UK. Will check out the link you posted. Sending you lots of love and light Sarah xxx
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Thanks for all the positive vibes I get from reading your inspiration...I plan to be here for many years too!
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I just responded to a wonderful post from SallyW on the "when does her2+ recurrence usually happen?" topic and wanted to share, since it fits this topic so perfectly:
Sally just hit ten years out and is released from her oncology checkups! They told her that anything beyond this point would be a new cancer, not a recurrence.
Sally was in the first Herceptin trial! So I owe my life to her bravery, and to all the other brave wonderful women who signed up.
THANK you Sally, and everyone else in those initial trials. You are my heros!!!!!0 -
Thank YOU sciencegal for that post. What a wonderful bit of news. I'm off to respond to Sally's post.
Such strong threads of hope and support here. Good health and happiness to you all.
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Congrats to YOU Septembersong, for being four years out. Yay!!!
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sciencegal, it's five years for me, but who's counting? (Apart from all of us, of course.)
Thanks for your good wishes!
Ann
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Oh thanks I lost a year there- chemo brain!!!!!
(good thing I work in cell biology and not math, hmm??)
EXTRA congrats then- woohoo!!!0 -
I think it's important that we understand as best we can what the distinctions in relative risk of recurrance are for HER2 BC and, separately, ER+ BC. I have noted this elsehwere, and in another thread on HER2 recurrance there are links to some comparative recurrance studies that demonstrate this relationship, but from what I've read and have discussed with my oncologist and others on various boards, the *greatest* risk of recurrance for HER2+ ER/PR- is similar to that of triple neg BCs: 1-3 years out. So, for ER/PR- HER2+ BCs, the risk drops after this critical period to a level comparable to ER+ BCs (wish I could point you directly to those studies!), but it appears that, like triple neg, ER/PR- HER2+ BC is less likely to recur the further out one gets. The risk is never eliminated, just reduced. However, if you're triple positive, or ER/HER2+ your level of risk after the critical 3-year window (which accounts for the HER2) will reflect the risk associated with your hormone positive status, and research indicates that ER+ BCs can recur many, many years out. HER2 generally tends to be fast growing, which is why it had such a poor prognosis before the advent of Heceptin; ER+ BCs tend to be slower growing, less aggressive. This basic difference is what accounts for that early, short, "critical window" for HER2 overexpression and the prolonged but low, steady risk of recurrance for ER+ BCs.
In short, as HER2+ BC survivors, we exit one window of 'risk' only to enter another. That is to say, there is always risk of recurrance, which is why it concerns me that Sally W's oncologist would tell her that if she developed cancer in the future that it *could* only be a new primary cancer. If I recall, she's triple positive. Noting that, I must iterate that it's my understanding that ER+ BCs can recur very late, some 18+ years after initial diagnosis, regardless of one's HER2 status. I do not believe that the overexpression of human epithelial growth factor receptors negates the overexpression of estrogen receptors and thus alters long-term recurrance risk for hormone positive BCs. I may be wrong, and so, too, the science. But, until more longitudinal data extending beyond the typical 5-year study is collected, analyzed and published, I personally think it prudent to clarify what we're talking about when we discuss the probabilities of recurrance, critical window periods, NED vs. cured, etc. What we choose to believe is one thing (whatever gets us through the night -- or day, for that matter!). But what we share on these boards impacts the decisions that the newly diagnosed, those currently in treatment, and our fellow survivors make. We should be careful not to casually throw numbers around.Just a thought or two. All my personal humble opinion. I will get off the soap box now.
I'll try to find the articles comparing ER+ to HER2+ recurrance rates. In the meantime, here are a couple quotes, and links to their respective sources, regarding late recurrance for early stage ER+ BCs:
"In women with ER-positive cancers, about half of all recurrences happen after the standard 5-year hormone treatment has ended, according to lead author Ivana Sestak, PhD, of the Wolfson Institute of Preventive Medicine in London." -- http://newsatjama.jama.com/2013/05/02/clinical-score-still-best-at-predicting-late-breast-cancer-recurrence/"'Most patients with early-stage, ER-positive breast cancer remain cancer-free after five years of tamoxifen treatment, but they remain at risk of recurrence for 15 years or longer after their initial treatment,' says Dennis Sgroi, MD, of the MGH Cancer Center and Department of Pathology, lead and corresponding author of the report. 'Our biomarker identifies the subgroup of patients who continue to be at risk of recurrence after tamoxifen treatment and who will benefit from extended therapy with letrozole, which should allow many women to avoid unnecessary extended treatment.'" -- http://www.sciencedaily.com/releases/2013/06/130629164733.htm
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AnneMarie_1970 I haven't read the study this article: Breast cancer recurrence seen as low after 5 years, talks about, nor have I seen other studies but it is very interesting:
"The study found that women who had tumors known as estrogen receptor positive, in which the hormone estrogen is driving the tumor, had a higher risk of these late recurrences compared to women whose tumors were not this type.
Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said. "That was certainly a finding that we were surprised to see,""
It would appear, since most HER2+ is higher grade that the risk may be a little lower than the average hormone positive. But I agree, my onc isn't going to say I'm cured when I see her next fall. My np is already discussing staying on AI an additional 5 years due to my tumor size.
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Anne_Marie1970, thanks so much for your thoughtful post.
I'm ER+/PR-/HER2+, and when I asked my oncologist if my risk of recurrence had diminished when I passed the three-year mark, she said that my ER+ status was a factor in risk of recurrence. Risk for me, and other women whose tumors have those markers, doesn't diminish completely after three or five years. I'll be looking very closely at continuing letrozole when my original five-year course of treatment ends in January.
I agree that we should be careful about what information we share on these boards. Incomplete or skewed information can do a lot of harm. Of course everything you read on line should be balanced by conversations with your doctor about your own medical situation. I think for all of us there's reason to hope that research will continue to give us treatments that will help us to live long and healthy lives.
Managing the anxiety and stress of this diagnosis is another story, but finding generous and compassionate fellow travelers on sites like this goes a long way to helping with that.
Wishing everyone good health and happiness.
Ann
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While I agree with the potential of the ER+ part of a tumor causing a late recurrence, I think the general thinking is that the HER2+ part trumps the ER+ part. I don't think that means it can never recur...but I think it is much more unlikely than just having an ER+ tumor by itself. We need more studies on this, don't we!!!
My tumor was less than 10% ER+ along with the HER2+. Oncologist told me that I still needed the AI/tamox because we really just don't know what part of a tumor cell can or how it gets turned on. As you said, the HER2 part is more aggressive, grows more quickly, and is usually a higher grade, but there is still that small portion of the tumor that has estrogen receptors. So... I'm sticking wiht the AI as long as I'm told. Don't want to be one with a late recurrence either!!!
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@Iago: "Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said."
This is consistent with my entire point.0 -
@Septembersong: Your wrote: "I agree that we should be careful about what information we share on these boards. Incomplete or skewed information can do a lot of harm. Of course everything you read on line should be balanced by conversations with your doctor about your own medical situation. I think for all of us there's reason to hope that research will continue to give us treatments that will help us to live long and healthy lives.
Managing the anxiety and stress of this diagnosis is another story, but finding generous and compassionate fellow travelers on sites like this goes a long way to helping with that. "
Hear, hear!!
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