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How fast do Her2+ tumors grow?

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  • Boobectomy
    Boobectomy Member Posts: 2
    edited January 2013
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    Hi Sydneybased, I'm recently diagnosed and its my first night on this website; I'm nor sure how exactly to find other women who have diagnoses identicle to mine!  For now I'm trying to do searches in the discussion board and it seems like, your tumor characteristics are pretty simialr to mine.  I haven't decided on treatment yet, as I'm awaiting the results of my mammaprint.  Do you mind me asking what treatments you had, when and what if anything you are willing to suggest!  I'm hesitant to get chemo being stage one and Node neg, I'm HER2 + and that's what everyone seems to be terrified of!

  • specialk
    specialk Member Posts: 9,227
    edited January 2013
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    boobectomy - sydneybased posted a number of months ago so I am not sure she will see this.  Welcome to you, although I am sorry that you have to be here! Because you are positive for ER/PR and Her2 you may want to come over to the Triple Positive thread, I will link it below.  It is a very active thread and you will see ladies with the same diagnosis that you have.  Was your Mammaprint ordered by your breast surgeon?  There are not a lot of ladies who have had Mammaprint done, but I also had one.  One of my biopsy samples was used so I was aware of my Her2 status prior to surgery.  Have you seen an oncologist yet?  The reason most oncs give chemo with Herceptin (the drug for Her2+) is because the two work synergistically better together.  There are several possible chemotherapeutic agents that can be used, some are tolerated better than others.  Do you have any questions that I can answer for you?

    http://community.breastcancer.org/forum/80/topic/764183?page=492#idx_14737

  • Boobectomy
    Boobectomy Member Posts: 2
    edited January 2013
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    Hi SpecialK, Thank you soooooo much for the reply, the link and offer to answer my questions, and boy do i have questions. :)  My mammaprint was finally ordered today.  After 30 years my brest surgeon got to order her first mammaprint (mine) today.  It was a fight, everything has been a battle, when it comes to my diagnosis.  I was referred to an onc who suggested TCH for 6 weeks, plus Herceptin and 5 yrs of Tamoxiphin even before I had my lymph nodes removed.  Long story short, I found about the mammaprint on my own and no one wanted to to order it for me.  I understand that I'm HER2+but no blood work, no tests, no nothing has been ordered on me and this onc wants to put me on chemo which I understand is standard.  But standard means nothing, a bunch of paperwork to cover their butts, or so it seems.  because if i had had stage 1, node neg breast cancer just a few yrs ago, I wouldn't be subjected to 6 heavy duty doses of chemo, whether I need it or not.  They are now saying that a great percentage of stage 1 node neg folks who are low risk are put on Herceptin alone and have a better survival rate than the ones who have developed secondary cancers years later as a result of radiation and chemo.  And why cant women under 50 get brachytherapy or intra operative radiation therapy since it spares our organs, skin and saves us from potential reconsruction surgeries and secondary cancers tht radiation causes; because its not the standard of care right now!! I dont want standard, I'm not a standard breast cancer patient; post menopause, >50, HER2-, etc... so what can I do, where can I go to get treatments that best suit me and are not made to protect some rich person from a law suit!?? Why aren't all HER2 positive women given the mammaprint?  I also had to fight for the AMAS blood test.  They are treating (according to standard of care that could change at anytime) us as if its still 1990.  Its 2013, every year new test and methods and etc are being discovered and approved... We can't take advantage of the science of medicine, why!  Because new FDA approved tests and ect are outside the comfort zone of doctors who dont do as mucg research as the patients do.  Also many studies show that in younger patients who can replace white blood cells quicker its best to administer chemo once evry two weeks like they used to, but noooo standard which is for the mean age of 61, says to do it once every 3 weeks!  what else am I not getting, or getting as if I were in my mid 60s that would be different if the mean age of all breast cancer patients in every study was 31 and not 61?  Sorry for the long note , and there is so much more I can go on about. :))

  • sydneybased
    sydneybased Member Posts: 25
    edited January 2013
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    Hi Boobectomy. Sorry to hear about your diagnosis. Big hugs. It seems to be pretty much routine that people with early stage HER2 positive breast cancer have the works: surgery, radiation, chemo plus herceptin, then tamoxifen if you are ER+. Current medical opinion says that this gives you the best chance. I had exactly the same thoughts as you about chemo, but now that I'm through it, I'm pleased I did it. I'm 2 years 3 months out from diagnosis and now feeling like I'm getting back to my old self. So, just go for it, but be aware that there are many, many women out there who are doing extremely well in their post-chemo, post-herceptin lives. Remember too that the stats are on your side. If you check out the PREDICT tool (it should come up in a google search) it gives positive stats for disease free survival over 10 years for individuals with our cancer characteristics who have had chemo and herceptin and who are on tamoxifen. Chin up. You can do it.

  • specialk
    specialk Member Posts: 9,227
    edited January 2013
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    Is the information you are seeking from Mammaprint your recurrence rate?  I am curious what drove you to seek out the test.  My surgeon was participating in a study with Agendia so wanted my biopsy sample tested.  The reason that chemo usually accompanies Herceptin is that it helps the Herceptin work better - I don't believe enough data has been collected in the clinical trial setting to document the use of Herceptin alone, particualrly in younger women.  If Herceptin is given alone it is often to older women who cannot tolerate chemo due to comorbidities.  Who told you that you could not have brachytherapy?  My surgeon uses it a lot, but I am not sure if he uses age as eligibility as a criteria.  For IORT, you would have needed to be treated at a facility with that equipment - did you ask about this at the time of your surgery or seek a second opinion from a surgeon at a hospital with IORT?  As far as the AMAS test, it has been around for about 20 years but it not used actively because it is not thought to be reliable by mainstream oncologists.  What was your purpose in requesting it?  The drugs used most often with Herceptin are AC-TH, Adriamycin, Cytoxan, followed by Taxol and Herceptin, or TCH which is Taxotere, Carboplatin and Herceptin.  These drugs cannot be given more often than every three weeks because the body systems cannot tolerate more frequent infusions.  For an early stage, small mass, node negative patient Taxol and Herceptin are sometimes given weekly for 12 weeks, then Herceptin is continued alone.  Age is not a predictor for who does well with white cell production or chemo tolerance - I have seen ladies in their 70's tolerate chemo well, some in their 20-30's, not so much.

  • sydneybased
    sydneybased Member Posts: 25
    edited January 2013
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    One other thing... I'm not sure what would make someone with our cancer charactertisics low risk of recurrence. I was told that my stage three grading plus an extremely high KI67 mark (from memory I think it was 60 ot 70%) made me at intermediate risk of recurrance. I think high risk was also mentioned at one stage. So the stage seems to be less important to these distinctions than the markers that say somthing about the rate of proliferation of cells. But the way I interpret all these categorisations is that that was the situation before treatment. After treatment I just get on with it and hope for the best. I don't want to sound flippant, but hoping for the best is all I can do.

  • Irene12345678910
    Irene12345678910 Member Posts: 1
    edited August 2013
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    I had pain 8 months ago my doctor detected a lump  and was referred for mamagrame and it came back clear. I now have stage 3 per plus positive, lump was 4 CC. I had a lumpectomy and no clear margins and 1st lymph node not clear. I need another lumpectomy and all my lymph nodes removed. I cant understand why they did not do more at the beginning. I will loose my job due to only being employed for 3 months, its shit but I am very positive and feel I will get through this.

  • Annie54
    Annie54 Member Posts: 39
    edited August 2013
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    My surgeon told me I'd had my tumor (3.1 cm) for about 2 years...it was fast growing but fortunately was not vascularized or lymphazied, got clean margins and the sentinal node was clear. But due to it's HER2+ and aggressive features, I'm doing the standard treatment...ie throwing everything I can at it now and hoping for no re-occurance.

    Annie

  • PnkJ
    PnkJ Member Posts: 1
    edited December 2014
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    Nevo84,

    I have had the same experience as your Mother. Her 2+ tumor 8 cm that I found in March 2014 and my radiologist said it made sense to him that my anaphylactic episode back in Dec 2013 was the start of the tumor. My body has been having a histamine response to the cancer/tumor. I started my first round of Herceptin last monday and I was told the same thing. By my surgeon, this is curable! I would love to know how your mother is doing

  • sunshine-denver
    sunshine-denver Member Posts: 1
    edited March 2015
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    Wow, this is all insightful - wish I had found this topic weeks ago! Diagnosed 1/29/15 with IDC, & still have been agonizing over lumpectomy vs. mastectomy (with varying opinions on 'urgency' - after initial panic that I had to do something and learn all this immediately - was advised I potentially had time...). At first, I was told it was Grade2 but then told Grade3 on a 2nd opinion visit (didn't know enough to ask for a copy of the pathology and look at it myself; lesson learned). IDC found was only 1.5MM (at first, I did not even realize we were talking MM vs CM) as that was the detectable calcification on the Mammo that was removed with a core need biopsy. Took numerous rounds of biopsies for 'additional areas of concern' (up to 4-6 CM) and getting on calendars for second opinions, etc. Meanwhile, three additional biopsies around the 4cm area came back 'clear' for IDC, but showed LCIS (I now understand better what that is - more of an increased risk factor). Due to age (46), super-dense tissue, LCIS, and the rather 'larger' area of concern (4cm is large for a barely-B-cup); advised strongly to have a double mastectomy. But, I just feel that I need more info first before take the more drastic step! How have some others out there decided on lumpectomy vs. mastectomy when <some> HER2+ present, but could be very small!? Now understand what KI67 means and I'm at 47%, high proliferation. I think I will go forward with lumpectomy of 2cm around the initial IDC of 1.5MM and see what we find. I have now seen articles that in an initial sample size so small, the HER2+ finding could be different post-surgery (some women have posted of that happening!). Appreciate any thoughts/other perspectives.

  • mom2threeboys
    mom2threeboys Member Posts: 53
    edited March 2015
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    Interesting topic. My DCIS was found on annual mammogram. Prior year showed 3 scattered calcifications in L breast. 1 year later, when I saw my mammo those 3 calcs had increased significantly in number and now lined up in my ducts. Ultrasound estimated the DCIS to be 3.5cm (turned out to be 6+cm on surgical pathology). And, the other breast now showed scattered microcalcs on ultrasound (turned out to be ADH on surgical pathology). My DCIS was grade 3, and I'd say it seems like this was quite a bit of growth in just 1 year.

    sunshine-denver - I decided on a bilateral mx due to a cousin my age who has been dealing with BC for 10 years now. Lumpectomy followed by a second lumpectomy, followed by mx, followed by mx on the other breast. Just the ongoing rollercoaster took a toll on her. Even though my entire multidisciplinary team at MDAnderson repeatedly told me I was a good candidate for breast conserving surgery, I just wanted to be done with that part of the journey. Turned out to be the best decision for me since surgical path showed the data from mammogram and ultrasound to understate the size of the cancer and IDC was not found until after surgery. Also HER2 +, so for me the gut feeling I had about pursuing bmx was the right choice. I wanted to be finished with the surgical treatment and knew I had a good chance of being a repeat surgical customer in a year based on the microcalcs showing in the "healthy" breast.

    My team also let me know that in breasts my size (32D) the lumpectomy would leave a sizeable defect which I would most likely want to surgically repair later. I thought if I'm going to need some reconstruction, then let's just go for everything now.

    We're all different and all you can do is read, study your risks and options and eventually reach that place where you feel confident about the decision you make with the facts known at the time.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,866
    edited March 2015
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    PnkJ,

    Nevo84 last posted to this thread in 2012, so she may or may not see your post. As a new member, you might want to check the date of a post you're responding to. If it's a few years old, or the thread itself has had no new posts in several years, starting a fresh threads is a good idea. You can also click on a members name and see when they were last signed in (last seen).

  • moderators
    moderators Posts: 8,094
    edited March 2015
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    Welcome to BCO to sunshine-denver, and those others starting treatment. Suggestion above of starting a new Topic is very valid and visiting the various relevant threads and joining networks for direct support is of great benefit. Try using the Search function helps.

    Wishing you all the best.

    The Mods

  • NATSGSG
    NATSGSG Member Posts: 64
    edited March 2015
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    Hello:  Yes, my tumor grew to about 2.6 cm in less than a year...and that's a really really aggressive HER2 cancer...,I refused to have neoadjuvant therapy...chosing instead to have surgery next  Wed, March 25, 2015, to be followed by radiation. Planning to refuse targeted therapy (Dr wants to use Hercetin, and after reading about 1700 responses to a thread here, it gives me the chill. Not going to suffer through all those side effects!).

  • chrissie29
    chrissie29 Member Posts: 81
    edited March 2015
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    NAT SINGAPORE-the side effects were not so bad with Herceptin.  I had 6 weeks of Herceptin and Perjeta with chemo and now am on just Herceptin.  I worked full time during my chemo regimen, was off for surgery and recovery, and went back to work during radiation.   I never questioned doing the chemo with Herceptin and Perjeta because of the effectiveness of these 2 drugs and the aggressiveness of having HER2+ tumor.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited March 2015
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    Nat - herceptin is a walk in the park - please remember it is not a chemotherapy it is a targeted mono clonal antibody.

  • elainetherese
    elainetherese Member Posts: 1,628
    edited March 2015
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    suzieq is right. Herceptin is generally well-tolerated by most of us. But, there are always a few who have SEs and problems.

    I did choose neoadjuvant, and am glad I did. Surgery and rads are great at addressing localized cancer, but chemo is about getting the cancer in your bloodstream/lymph system -- all those cancer cells floating around your body, looking for a new home. But, to each their own. I wish only the best to you, Nat Singapore.

  • loganberry
    loganberry Member Posts: 1
    edited April 2015
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    I am new to this site.  Since first diagnosed I have had an up and down journey.  I need to stop reading all the bad stuff and keep to the positives, its driving me crazy.  I am triple positive starting chemo May 11th, I'm so scared of the unknown.  Reading everyone's posts has helped me out tremendously.  Regarding Tumors growth, I never understood why the doctor had me wait 2 months before surgery?  I always wondered if it was a family member would they wait?

  • princesstina
    princesstina Member Posts: 129
    edited April 2015
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    My MO would not allow me to wait - I am ER/PR negative and HER2+ - 2 cm lump - she said she would allow me to delay chemo MAYBE a week if there was some monumental life event going on, but other than that, she expected me in the chair on the next Tuesday morning. Some of the doctors are not of the wait and see variety. I wish the word would get out faster.

  • stephincanada
    stephincanada Member Posts: 29
    edited July 2016
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    I had two MRIs six months apart. Within that time period, I developed a 2.1 cm her2 positive, er/pr negative, tumour. Before surgery, my surgeon correctly predicted that it would be her2 positiveand er negative, as she said that those tumours are known to grow incredibly quickly. She also said that they do not plateau in their growth; they just keep on growing.

    Ironically, the reason I had the MRI at a six month interval is that they were monitoring something in my healthy breast. Lucky twist of fate...

  • HelenWNZ
    HelenWNZ Member Posts: 404
    edited July 2016
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    I had a mammogram in August 2015, I was recalled for another mammogram on 21 August 2015 followed by an ultrasound to be told I was all clear just a couple of cysts. At end of Feb I noticed with a self exam that one breast looked fuller, a nipple was retracted and I had a flat spot - same breast as checked out in August. End result speaks for itself. My surgeon was keen for surgery first and then chemo which I am currently on. So all I can say is things went from all clear to 3C superfast. A CT scan showed no evidence of spread but I have lost faith in the testing systems and besides that was 7 weeks before chemo started so who knows how much has been happily roaming my blood stream.


  • paloverde
    paloverde Member Posts: 4
    edited November 2016
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    Group - I am being treated for Stage IV, so I get CT scans with measurements of things that are larger than they should be. In a chest CT scan on Aug 18 of this year, the largest of my liver tumors was measured at 5.0 cm x 3.2 cm. In an abdominal CT scan on Aug 30, the same tumor was measured at 5.3 cm x 4.5 cm. Using formulas for calculating volume of an ellipsoid (fancy mathy name for egg), that tumor went from 27 cc to 56 cc, or essentially doubled in volume, in less than 2 weeks! It is ER-/PR-/HER2+, Grade 3. I don't know the Ki-67.

    But do NOT let doctors tell you all breast tumors are slow growing. That's just CYA for missing it the first time, or not wanting to be rushed into scheduling surgery. Listen to your bodies and what you can see with your own eyes.

    BTW, after 9 weeks of chemo, that bad boy is down to 6 cc. The meanest tumors are often the most susceptible to the chemo. Best wishes to you all.


  • elizacon1220
    elizacon1220 Member Posts: 2
    edited November 2016
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    I'm brand new to this site, just saw your question and was hoping to see how others replied to it. Did you get any useful info about how fast HER2 pos tumors grow??

  • elizacon1220
    elizacon1220 Member Posts: 2
    edited November 2016
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    I am interested in an answer to this question about how fast HER2+ tumors grow --with the hormone negative receptors. DOn't think I understand how to navigate this site. I see only posts and no replies! Or is the whole thing just posts --no replies?


  • Kattis894
    Kattis894 Member Posts: 150
    edited November 2016
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    I went on my regular mammogram every 2 years. When they found it was almost 5 cm 2 years later.

    I am going for my 7th round for taxol Monday, getting my last perjeta and herceptin before planned surgery right before christmas...my lump has so far remained the same size 5 cm...I guess I am not part of the lucky ones where it shrinks...some shooting pains in different parts of my body..like my breast that is well and in my ovaries area (thinking of course I might have mets...scared.. Head ace as well...I have 3 rounds left of taxol and can´t wait for this to be over..and the lump to be removed. I keep asking my doctor if it is possible for the cancer to spread during treatment..considering my nodes were healthy this summer. I am not getting a straight answer and that scares me too..there are no guarantees for anything..but onc keeps telling me the lump feels softer. They will remove the entire breast since no shrinkage, so having meeting with the surgery team to discuss removal of the breast and ask if I should remove the other one as well or what would be best for me.

    Not looking forward to christmas this year...

    Did anyone have the cancer spreading while in treatment before surgery? I feel like I am playing chess with death here...

  • Shell72
    Shell72 Member Posts: 28
    edited December 2016
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    Due to having a family history of breast cancer and myself having fibrocystic breast disease I have been on the yearly mammogram and ultrasound check list since I was 40. I have always had an all clear with only simple benign cysts discovered and measured each time. I had my regular checkups in January this year (now 44yr) and also got an all clear. Then on the morning of my son's birthday, in September this year, some 8 months later, I felt a breast lump while showering. It felt the size of a large grape. I went to my Gp the next day, determined not to ruin my son's special day. Had mammogram, ultrasounds and a needle aspiration was attempted as they thought it was a cyst. They couldn't successfully drain lump so took 3 core biopsies. I was diagnosed with IDC and 6 weeks after finding lump finally had my mastectomy and sentinel nodes removed. In the time from my initial discovery to surgery date you could see the lump without applying any pressure to my breast. The tumour was measured as 28mm in length which was 3mm bigger than the measurements taken during biopsy but what frightened me was the thickness of my tumour had gone from 13mm to 25mm ! I know they say biopsies can make tumours swell due to trauma but I had gone from having a lump I found by accident (right out to side at 8pm position on breast) to having a lump I could see &couldn't sleep on due to discomfort from the pressure. So pleased it's out!

  • HelenWNZ
    HelenWNZ Member Posts: 404
    edited December 2016
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    I had a recall for a mammography on 21 August 2015 and was told I had a cyst and that everything was fine. Come February this year I noticed my nipple had inverted and my left breast had a flat spot. After waiting 8 weeks to be seen I was diagnosed with a 3.5cm tumour that had spread to 18 out of 22 lymph nodes. I think her2 + definitely are very aggressive


  • juststace
    juststace Member Posts: 14
    edited January 2017
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    mine went from 2cm-7cm in a month while we were seeing doctorns for opinions on treatment! they think i was stage 2/3 - i did chemo first- just finished and it's shrunk to 5mm.

    i'm glad i did chemo first. i would have had a mastectomy and now i get to have a lump

  • Mississippi
    Mississippi Member Posts: 1
    edited January 2017
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    hi am jan and brand new to bc org,i wud like to say i agree ladies i went to sleep a fri nite to wake sat morning with a bigger heavier and rather hot to touch right breast, date was mid june 2011, i was given antibiotics for a wk and told to return wen course fin, which 10 days after 1 st visit returned no change in symptoms except breast went slighty bigger but no lump felt at all was referred to lmc turns out after tests i had her2 positive breast cancer in just 21 days it had spread to all lymphnodes undr r arm, even i asked my oc how can this more or less happen overnite, bcoz janet IT can and it has my family asked her if i ad lump i may of not felt no no lump with this cancer IT is a thread, a very rare and aggr breast cancer, xxxxxx


  • Kattis894
    Kattis894 Member Posts: 150
    edited January 2017
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    Hi again ladys,

    I read somewhere on here that if you do not have a complete respons as tripple positive the prognosis looks worse for recurrences.

    So there was no Complete response for me...my tumor was 2,5 cm x 2 cm at removal, instead of the 6,5 cm x 4,5 cm so it has shrunk some but I am still concerned about this.

    I will start the radiation and have started Femara. My Ki65 went down from 35% to 6% so I guess that is good. Not sure what it means. My onc is on holiday so I still have to wait for the entire picture and explanation. If anyone here has some advice I would be so happy.

    Is it true that the prognosis looks worse and why?

    The nightmare continues....