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When do most recurrences for HER2 happen

Iamstronger
Iamstronger Member Posts: 102
edited August 2016 in HER2+ (Positive) Breast Cancer

Hi Ladies,

Has anyone heard that if you are HER2+ and you don't have a recurrence during the first year or two, the odds of it coming back drop dramatically? 

Funny thing is I had one Oncologist say that to me and then I had another say that isn't the case.  The one who said that isn't the case said that Herceptin has changed the playing field on that logic and it is no longer valid.  Just curious as to if any of you have heard anything like this. 

Thanks,

V

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Comments

  • lago
    lago Member Posts: 11,653
    edited January 2011

    I have heard although I don't know how true it is that for those who are triple negative that reoccurrence is likely to happen within the first 2-3 years. If you clear that as a triple negative your prognosis looks pretty good for non reoccurrance… but again I don't know how true that is. For us triple positive gals I have no idea.

    Herceptin is still fairly new so I don't think they really have good statistics yet. This why it is hard to find accurate information. There are so many other factors besides HER2+ that effect recurrance. You may want to read some of these links:

    Breast Cancer Recurrence | Background Information
    http://www.gaeainitiative.eu/word_page/BC_Recurrence.htm
    Lists risk factors for recurrance.

    Breast cancer recurrence seen as low after 5 years
    http://www.reuters.com/article/idUSN1248209720080812
    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,"

    Risk of Recurrence in Early Breast Cancer
    http://www.lifeabc.org/risk_recurrence_more.html

  • sheila888
    sheila888 Member Posts: 9,611
    edited January 2011

    Hi...I'm also triple positive and its almost 6 years now.

    So far Happy and Healthy.

    Sheila

  • fightinhrd123
    fightinhrd123 Member Posts: 21
    edited January 2011

    My trial Dr who has written books and stuff said after three years your risk drops dramatically.  I think he mustve meant after surgery and chemo, because i had chemo first, and then surgery two years ago November, and he said i was at 2 years.

    Laura

  • suemed8749
    suemed8749 Member Posts: 210
    edited January 2011

    Hi Laura - To celebrate my 3 yr dx date next week, I'm going to take your doctor's words to mean "3 years from dx"!!Wink 

    Sue

  • DianaT
    DianaT Member Posts: 13
    edited January 2011

    my onc said that after 2-3 yrs with Her 2++ the chances drop, and that that timeline starts from diagnosis.

  • MaiTai
    MaiTai Member Posts: 65
    edited January 2011

    Hi,

     My onc did not mention a time line at all.

    He talked about the overall chances of recurrence which include the size of the tumors, the response to the chemo (I had chemo first and then the surgery) and of course the HER2+++.

    Now I'm curious and will ask him next time I meet him. He really wants me to live life without worrying about recurrence. He doesn't believe in checking markers or PET CT's.

    I wish I could live without the fear. 

  • myesan22
    myesan22 Member Posts: 5
    edited January 2011

    My oncologist said the greatest risk for recurrence is in the first 2 years for my HER2 positive cancer.

  • ElaineD
    ElaineD Member Posts: 16
    edited January 2011

    Sounds a bit like an urban myth that we would love to believe! I had a recurrence after 12 years, and am now stage 1V.

  • Sassa
    Sassa Member Posts: 98
    edited January 2011

    There was a study somewhere (don't remember where I read it) on the affects of herceptin on recurrence.  It stated that the positive effects of herceptin wear off around 4 years after treatment with the herceptin.  After that point, the patient reverts back to the recurrence risk of her hormone status.

     Good news for hormone negative folks as you are past the point at which triple neg cancer usually occurs.

  • weety
    weety Member Posts: 378
    edited January 2011

    It would be interesting to read that study.  Maybe someone can find it for us???

  • lorenar
    lorenar Member Posts: 41
    edited January 2011

    It would be great if this is true. I just found out yesterday I am HERP+. 6 months of chemo followed by a masectomy then back to 6 more months of chemo. Get my petscan Thur/ will get results Fri. Doctors have me really scared, hoping it has not spread to anywhere else in body. I am trying to get educated more on this . Your stories are inspiring. may you all be blessed back to better health.

  • arby
    arby Member Posts: 27
    edited January 2011

    Hi, I'm a gal who had a recurrence in under 2 yr. The first time fish test was inconclusive, but in 09 I was definitely her 2 + so I underwent a mast and chemo. with herceptin for a year.  My onc says its the herceptin that will make me well.  He also said the first 2 years after treatment are the most critical so I'm leaving my port in til I've passed that mark in 2012.  I was neg on the hormones.  We all have brighter futures with herceptin in our arsenal.  all the improvements in drugs and info is a real blessing.  arby

  • orange1
    orange1 Member Posts: 92
    edited January 2011

    Re: the 4 year effectiveness of Herceptin - 

    Does anyone know of a large adjuvant study that reports data beyond 6 years out?  I don't.  Without such a study I think it would be hard to say with any certainly what the long term effectiveness of Herceptin is - not enough patients have been out of treatment long term. 

    I too, am interested in any study that address this. 

    Thanks. 

  • 3jaysmom
    3jaysmom Member Posts: 2,604
    edited January 2011
    wow! you ladies know a whole lot thsn me, thats' fo sure. im having real bad rib pain, and some swelling in the  left side. However, i got "chemo bloat" an honest to God medical dx.. so, im so big around the middle; who can tell? thursday i will go for my 3rd PET scan. headaches are bad, so we'll see how the scangoes, then follow up with a brain MRI. i already know i have had a tiny braIN TUMOR SINCE BIRth; (sorry about caps)) so, i never worried, till now. hope the nasties didn't move to there!! say some prayers, light candles, send good vibes: whatever you do personally. i'm a bit scared, but there are "good" reasons where the pain COULD show up. here's for a blessing!! im nervous, of course, but not EXPECTING it to be the BEAST..             3jays
  • blondie45
    blondie45 Member Posts: 82
    edited January 2011

    praying for you 3jaysmom

  • cyalata
    cyalata Member Posts: 2
    edited January 2011

    I was on Herceptin for a year and Arestin - 2 yrs after my first diagnosis (11/08) I had a dry cough for about a month, but felt fine otherwise.  My onc ordered a chest x-ray which looked like I had pneumonia, then ct scan & bronchoscopy which confirmed lesions (cancer) in my left lung & trachea. I was SHOCKED! When I was diagnosed 2 yrs ago I was ER/PR+ & HER2+ but now I'm ER/PR- & still HER2+.  I'm now on xeloda & tykerb - starting round 2 tomorrow & will get a PET scan again end of round 3 in late February. This time is even worse than the first but I'm doing everything I can to try and keep myself as healthy as possible.  Cough is getting better!

  • ipursuit
    ipursuit Member Posts: 12
    edited January 2011

    Hi Ladies,

    I did exhaustive research at start of my treatment and then again a year ago when I initiated entry into the Neratinib trial (I think I'm on the placebo Frown). The rate of recurrence for HER2 BC drops dramatically by 2 yrs out, and then falls further up until 5 yrs, with very small risk thereafter.  Not down to ZERO risk, but possibly no worse risk then the general population.  None of the studies ever clarified from what event the clock started ticking (diagnosis? surgery? first chemo?).

    If someone can tell me how to paste images in here, I will try to track down one of the charts on this.  

  • denny123
    denny123 Member Posts: 1,573
    edited January 2011

    I wonder if that applies if one continues on Herceptin?

    I am an 8 year survivor of Stage 4 with liver mets.  Started Gemzar with Herceptin in Jan. 2004, and was in remission after 9 months.

    Have continued on Herceptin and will be on it for life and have been in remission for over 6 1/2 years!!

  • lago
    lago Member Posts: 11,653
    edited January 2011

    Denny that's fantastic… 6.5 years remission. Keep it going girl! The longer you are remission the more time there is to find a cure or another even better drug to keep you in remission.

    ipursuit I wonder if there is a difference for us if we are hormone positive vs those of us HER2 gals that are hormone negative as far as that 2 years out statistic?  I also wonder if being node negative really makes that much of a difference with HER2+.

  • REKoz
    REKoz Member Posts: 164
    edited January 2011

    May I join in as I wonder the same about us triple positives. Not until reading here did I know that the majority of HER2+ are hormone negative. Not surprising of course because I learn just about everything from here!

    Anyway, am I wrong in thinking that because I was strongly positive- 90% both ER and PR that though my risk due to HER2 may go down after 2-3 years, I then have to look at the ER risk factors? In other words, no reoccurance in the first five years is absolutely a good thing BUT being so strongly ER+, will keep me at the same risk AFTER 5 years as those who are ER+ but HER@ neg?

    Hoping one of the many great researchers on this site can provide some insight.

    God Bless us all.

    Ellen

  • lago
    lago Member Posts: 11,653
    edited January 2011
    REKoz what is even rare is being highly ER+/PR+ and HER2+. I'm only 30%ER+ and 5%PR+. Not sure what that means other than I think hormone therapy will probably work better for you since you are highly hormone positive.
  • weety
    weety Member Posts: 378
    edited January 2011

    I've read the same thing about ER-PR- being more common, but I think in addition to that, even when HER2+ presents itself with ER+PR+, the percentage of positiviity tends to be lower also, on average, than other types of cancer with estrogen dependent receptors.  High positivity like you have is more rare, but I don't think it is unheard of, just less common.  HER2 tends to go along with more aggressive cancers, and generally, ER/PR negativitity tends to go hand in hand with the more aggressive cancers (HER2+ and obviously, TN)   So, I don't know (and I don't think anyone really knows) what the implications are of having HER2+ WITH strong estrogen dependency.  The trial results we have, which are still coming in year by year, only go up to the 6 or 7? year mark.  There really isn't any data out there that looks at recurrences with HER2+ years later.  I wish there was.  Too bad there wasn't even some kind of retrospective study or something we could go by. 

    In addition, there have even been some more recent studies going on (I think preadjuvant) that have been finding that giving herceptin may "turn on" the estrogen receptors.  I read that it happened in the laboratory, but I haven't heard if they are finding the same thing in actual people.  If this pans out, though, maybe we all end up somewhat estrogen postitive, once the herceptin acts on our tumors???  That's one reason why I'm afraid to stop my AI, even though my BC was only "weakly" positive for estrogen.

    Chime in, if anyone knows differently or has seen anything else.

  • suemed8749
    suemed8749 Member Posts: 210
    edited January 2011

    Thanks for that post, ipursuit. I'm in my final month of the Neratinib trial - also thinking I'm on the placebo - and your post put a Smileon my face since today is the 3rd anniversary of my dx.

    Denny - What a wonderful post! May NED continue to be the "new normal" in your life.

  • mmm5
    mmm5 Member Posts: 797
    edited January 2011

    Ipursuit-

    Thanks for posting! I will add that I have researched and researched this and have spoken to several Oncologists trying to make decisions about treatment etc. My favorite Oncologist is a renown Oncologist that has worked at MD Anderson and is consulted for many cases across the country. He is at a teaching Hospital and always has such interesting information. 

    Anyway He is of the strong opinion that that with Grade 3 highly aggressive Her2 tumors that the first 2-3 years are most important. So much so that recently he has told me I could come off Hormone blockers as I am nearly 3 years out. He says the risk is minuscule, he was also in San Antonio where Slamon discussed 10 year results of Herceptin and in his words there were no Surprises in that no late recurrence  data was being presented. With a year of Herceptin (TCH) (ACTH)  your chances of recurrence after year 3 were very low. He has used the word "cured" with me and he has even taken my hand and said "you are going to live a long time"> 

    Now of course I know there are no guarantees and there are exceptions to the rule, etc etc, however I will tell you that I keep in touch with MANY MANY Her2 gals and I have not heard of any recurring after 3 years. Also I keep a running email with this ONC and he put in writing that he has not had one early stage Her2 gal recur in the 5 years he has been treating them.  The only one I know to have recurred is one that later found out her HER2 status was inconclusive, meaning that she was found to be a low level of Her2 and perhaps Herceptin was not as effective.

    Weety is right that many Her2 gals if ER positive are minimally so, however again there are exceptions. I was 15 percent ER positive and I am still unsure how to handle this. I am at 3 years and still researching with much anxiety and want to choose the right path. In the end We can only get a lot of advice and then listen to our own inner intuition.

    In my research I believe the odds are on your side after 2-3 years and I would just advise to work on the anxiety piece of all of this because it really can be crippling as I can attest. I am 3 years later and wish I could have not been frozen with so much anxiety and wasted that time, however it is an evolving process. I pursuit if you can post an article or just post the link it always helps for new and us older posters to see it in writing.

    AND SUEMED CONGRATULATIONS TO YOU!! You and I have been a bit on the same schedule and you have definitely seen me through many of my HIGH ANXIETY times, so Thanks you and MANY BLESSINGS to YOU>

  • mmm5
    mmm5 Member Posts: 797
    edited January 2011

    PS Both Oncs have advised me that Her2 trumps ER positive so that I should think of myself as Her2 first and the 3 year still applies as it was high grade high oncotype, highly aggressive blah blah, very depressing at first until I came to understand Herceptin.

  • cbm
    cbm Member Posts: 8
    edited January 2011

    Hi, I'm so glad you started this thread vmarie; thank you.  I was 90% ER/PR positive and Her 2 positive, but minimally.  I had a mixed tumor that had characteristics of both IDC and ILC, and the in situ forms of both as well, and had one positive node and no other apparent invasions.

    I asked my doc what the percents meant.  He said it's how much of your tumor has/contains that characteristic.  They count the cells that behave a certain way, and calculate the measurement using that as the numerator in the fraction.  So , I said to him, does that mean, that since 90% of my tumor was ER/PR positive, 10% might be triple negative.  He said that's exactly what it meant.  Using the same logic, the part that is ER/PR positive isn't necessarily the part that is HER2+, although it could be, I guess.  Or it might be some oddball combination.

    Then there are all the other lurking matters, like the grade, the degree of vascular invasion, quadrant/location of the tumor, and the specific gene that failed.  In my case, I think it's a repair gene, because my sister is confirmed Lynch syndrome, but it might be something else.  There is more than one kind of cell mechanism failure, apparently.

    I asked for and got 2 years of Herceptin, and I'm in the Neratinib trial.  But I never miss my evening date with Femara.   Part of the neratinib trial is a thorough tumor analysis, and I've asked for a more detailed understanding of my specific disease, since it doesn't seem to come down to only the major factors.  

    I just read "The Emperor of All Maladies, A Biography of Cancer"; what an amazing read.  I think I understand better how treatment choices are made, and how much the politics of the treatment community influence what is researched, how it is researched, and what it means in the long run. 

    Warmly,

    Cathy 

  • 3daywalker
    3daywalker Member Posts: 15
    edited January 2011

    Hi her2 gals!

    I was told by 2 onc. that recurrance is based on several factors for us.

    1. Lymph nodes involvement and how many

    2. Stage of cancer

    3. tumor grade

    4.age at DX

    These were the most noted for recurrance for Her2+.

    Tests are only done through the 5 year period so far on Herceptin so no one knows what comes after the 5 year mark. Also if you had an oncodx or Braca 1 or 2 this helps determine your recurrance chances.

    Hey her2+gals were are fighters! We are Warriors! So lucky to have been DX now and not 10years ago when Herceptin wasn't around cuz those ladies didn't have much of a chance. Thank you for Tykerb too!

  • Caya
    Caya Member Posts: 46
    edited January 2011

    My onc. sent my tumour out 3 times because its characteristics were highly unusual - triple + - ER 90%/ PR 50%, Her 2+ and with mucinous characteristics - mucinous is a good prognostic feature (2-3% of BC) and unheard of together with Her2+.

    I'm over 4 years out now - at the time he told me my "cure" rate - yes, he used the word "CURE" was well over 90% - he says there are no real stats yet for us triple+ who got Hercecptin at early stage - We will be the stats, and so far we are looking good.

    I had 2 1/2 yrs of Tamoxifen, 1 year on Femara so far.  Hoping for the CURE for all of us.

  • lago
    lago Member Posts: 11,653
    edited January 2011

    3daywalker I though proliferation rate was a factor too… granted that's usually high with HER2+. I have often wondered since my proliferation rate was high (very fast growing) and my HER2+ was 15 if they were directly related.

    How about LVI? (lyphmo vascular invastion)

  • libraylil
    libraylil Member Posts: 325
    edited January 2011
    cbm  your diagnosis is very close to mine.  I'm 90 ER 85 Pr and barely 3.4 HER2.  My needle biopsy back in July showed ILC, now after the lumpectomy there was an area of DCIS.  My oncologist keeps telling me that he feels I will have a very good outcome.  The surgeon on Thursday was very positive about my pathology (Stage 2) with 3 lymphies involved. (2 are sentinel and I think one was an armpit)  I just finally told the surgeon that all of this scares me.  I'm trying to concentrate on the positives of the pathology.  I'm going Friday to clean up one margin.  However, I promised that if I came out of this without a boatload of lymphs involved I would not whine and complain.  I do think they are more concerned with hitting the HER 2 mess first.  This is one reason they offered me neoadjuvant chemo, to stop anything that might have escaped rather than surgery and waiting 2 months for chemo.  I definitely think us triple positives need to find a way to communicate over the long haul. Yes, TG we have Herceptin.  I start back in 2 weeks and then begin rads.  libraylil

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