Grade 1 but Her2+

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CindyB
CindyB Member Posts: 43
Grade 1 but Her2+
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  • CindyB
    CindyB Member Posts: 43
    edited February 2008

    I had my first oncology visit this week.  She says that it is pretty unusual to be a grade 1 and also Her2+.  She going to retest the tissue, probably after surgery also.  Has anyone else had this outcome?  Thanks and be well!

  • Jaydee
    Jaydee Member Posts: 74
    edited February 2008

    Hi CindyB,

     I posted a similar comment to yours earlier today - I am also stage 1 and Her2+ and I was told not to worry about it!  I am also ER/PR+and now being treated with Tamoxifen and had rads.  Just don't understand why everyone seems to think Herceptin should be given automatically.  My oncologist said there are very varying views on the importance of the HER2 factor.

  • CindyB
    CindyB Member Posts: 43
    edited February 2008

    Jaydee,

    Thanks for the info.  I am also ER/PR+.  Your comment gives me something more to ask the oncologist about if the second path report comes back 3+.

    Take care!

  • JoniB
    JoniB Member Posts: 346
    edited February 2008

    I just found out that I was HER2+ and low ER/PR (they are retesting).  I was grade 1 as well and only 3 mm.  Pretty upset.  I may have chosen a different treatment plan had I known this at the time I was diagnosed. 

  • BethNY
    BethNY Member Posts: 2,710
    edited March 2008

    cindy there was a huge discussion about grade and her2 status a long while ago.

    The same question was posted-- how common is it to be grade one, and her2+++, when almost everyone who is her2+++ is grade 3.

    I think it's important to look at confirmation of her2 by FISH, and go from there.

    if you tested positive for her2 by IHC, and then it is confirmed by FISH, then herceptin is a great security blanket that you should consider.

  • MarieKelly
    MarieKelly Member Posts: 591
    edited February 2008

    G. Kenneth Haines IIIContact Information, Elizabeth Wiley2, Barbara Susnik3, Sophia K. Apple4, Snjezana Frkovic-Grazio5, Carolina Reyes6, Lynn C. Goldstein7, Farnaz Dadmanesh8, Allen M. Gown7, Mehrdad Nadji6, Matej Bracko5 and Fattaneh A. Tavassoli1

    (1) Department of Pathology, Yale University School of Medicine, EP2-611 20 York Street, New Haven, CT 06510, USA
    (2) University of Illinois at Chicago, Chicago, IL, USA
    (3) Feinberg School of Medicine Northwestern University, Chicago, IL, USA
    (4) David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, CA, USA
    (5) Institute of Oncology, Ljubljana, Slovenia
    (6) University of Miami Jackson Medical Center, Miami, FL, USA
    (7) PhenoPath Laboratories, Seattle, WA, USA
    (8) Cedars-Sinai Medical Center, Los Angeles, CA, USA

    Received: 29 October 2007  Accepted: 2 January 2008  Published online: 18 January 2008

    Abstract   Background In addition to providing a timely and accurate diagnosis, pathologists routinely provide prognostic and predictive information to assist in the treatment of patients with invasive breast cancer. As our understanding of breast cancer at the molecular and genetic level improves, sophisticated new treatment options have become available to patients. The demonstrated improvements in disease-free and overall survival with the use of trastuzumab (Herceptin) has made HER2 testing a standard of care in the evaluation of patients with breast cancer. Specialized breast centers have accumulated sufficient experience to recognize that HER2 positive tumors tend to be of higher grade and to be estrogen receptor negative, whereas well-differentiated breast cancers rarely are HER2 positive. Methods To determine whether HER2 testing is necessary in well-differentiated breast cancer, we analyzed the frequency of HER2 positivity among 1,162 cases from 7 major breast centers or commercial laboratories in the United States and Europe. Results Well-differentiated breast cancers, defined by either nuclear grading or the Scarff-Bloom-Richardson system, rarely are HER2 positive (mean 1.6%, range 0-2.8%). Conclusions Given the low rate of well differentiated HER2 positive tumors, falling within the range reported for false negative IHC tests for HER2, and the absence of published data demonstrating a beneficial effect of trastuzumab therapy in this subset of patients, HER2 testing should not be considered a standard of care for all patients with well-differentiated breast cancer.

  • CindyB
    CindyB Member Posts: 43
    edited February 2008

    Thanks Beth.  First test was by FISH, but now that I've had the lumpectomy, I'm sure they will confirm. The radiation oncologist said that he too had never see a Grade 1/Her2+ combo, but thought that mine would truly hold up as a Grade 1.   I wonder if it is an automatic that Her2+ chemo and herceptin.  Anyone know?

    Thanks for the help!

    Cindy

  • staythecourse
    staythecourse Member Posts: 3
    edited February 2008

    Feb22/08   Yes/ I'm recently with er+pr+Her2+ 1.5 cm /clear margins node negative   Stage 1 Grade 1 cells well differentiated

    FISH 3 overexpressed    Trying to decide if I should have chemo ..it's a given on the Herceptin and rads but it's chemo that is the big?

  • JoniB
    JoniB Member Posts: 346
    edited February 2008

    I am waiting on the results of my FISH as well. 

    Staythe course - I am trying to find out if doctors will prescribe Herceptin without chemo.  I'm at Sloan and will find out when I have my next appointment.  

  • mimi1030
    mimi1030 Member Posts: 700
    edited February 2008

    My mom was stage 1 and Her2+, Aug 2004.  At that time Herceptin was not given to node negative people, so my mom didn't get it.  Unfortunately Sept 07 she was dx with widespread and extensive mets to liver and bones.  Now she is able to get herceptin, and it is crushing the life out of the cancer in her body along with Taxol and Zometa.  Pity she couldn't have had this 4 years back though. 

  • JoniB
    JoniB Member Posts: 346
    edited February 2008

    mim1030 - I'm sorry that your mom was not able to get Herceptin the first time she was diagnosed.  Hopefully, the treatment she is on now will help her.  It's scary that the drug was available in 2004 and that she was not able to get it.

  • CindyB
    CindyB Member Posts: 43
    edited February 2008

    HMMM, interesting so many perspectives.  My oncologist told me today that they give chemo for tumors over 1 cm (mine was 0.7), and/or positive lymph nodes (mine were negative), and/or with positive Her2neu (which I am) because it can be a "bad actor".  Radiation was a given as was herceptin.  She is uncertain about the chemo because she wants to do enough but not something unnecessary.  Grade 1 with Her2+ is a rarity.  She consulting with a Dr. Goetz at Mayo who apparently does a lot of research in this area.  If we do chemo, it will be TC with Herceptin. 

    I really appreciate knowing others' experiences and perspectives.  Some situations are not clear cut and I, like everyone else, want a cure!

    Take care,

    Cindy

  • JoniB
    JoniB Member Posts: 346
    edited February 2008

    I looked up Dr. Goetz at the Mayo Clinic since I am in the same situation - small malignancy (3 mm) no nodes.  Dr. Goetz is a consultant for Hoffman LaRoche who I am guessing is the drug manufacturer for Herceptin.  I would greatly appreciate it if you post what your oncologist finds out and what your treatment plan is.  Will they give Herceptin without chemo?  I don't really see that in the literature. 

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited February 2008

    The FDA last month approved Herceptin as a stand-alone agent meaning it can be used without chemo for early stage.  http://www.caring4cancer.com/go/breast/news?NewsItemId=41257

    Genentech is the maker of Herceptin, although Hoffman LaRoche is the European distributor.

  • CindyB
    CindyB Member Posts: 43
    edited February 2008

    Cathy, you are a wealth of info!  Thanks!  Joni, I will keep you posted. 

    I did review the article Cathy cited.  It indicates that Herceptin has been approved for patients node negative or positive and at least one of the following: hormone receptor negative (I am ER/PR+), grade 2 or 3 (mine is 1), greater than 2cm in diameter (mine is smaller), and/or under age 35 (unfortunately, I've seen 35 awhile back!).  But Joni, it might fit for you and I'm sure others on the list.  Of course, what we also know is that Herceptin works!

    Any other info is greatly appreciated.  It just helps me be better informed!

    Take care all,

    Cindy

  • CindyB
    CindyB Member Posts: 43
    edited March 2008

    Joni- Her2 and grade 1 confirmed, so I will do TCH - 6 TC with weekly herceptin, then herceptin every 3 weeks for one year.  Pretty aggressive treatment, but neither I nor the oncologist want to think that we didn't do all we should to prevent recurrence.

    Do you have a treatment plan in place?

  • JoniB
    JoniB Member Posts: 346
    edited March 2008

    Cindy - Sorry, what is TCH - 6TC?  Since I had not thought about chemo when my diagnosis of HER2+ came in, I don't know all the terminology.  My medical oncologist still does not think I should do chemo and does not advocate herceptin without chemo so I still don't know what I will be doing.  Did your doctor speak with Dr. Goetz?  I know that was the plan. 

  • CindyB
    CindyB Member Posts: 43
    edited March 2008

    Sorry about that.  TC is a particular chemo combo - cytoxan and taxotere, I believe, but someone correct me if I'm wrong.  I should know this off the top of my head.  The h just stands for herception, which they will give with the chemo.  My oncologist did visit with Dr. Goetz about the situation, and he agreed it was an odd combo.  She did say he was he was equivocal about chemotherapy, but if we did one, that was the one to do.  He definitely thought herceptin even without chemo.  My oncologist does want me to do chemo, mostly because I'm pretty young and it decreases odds of recurrence in my case by 5%.  I personally feel like I need to do all that I can to beat this.  If I didn't do it and it recurred, I would always wonder if I should have.

    Keep me posted on you.  I wish you the best.

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2008

    Found this Thread.  Im Stage 1, grade 1.  ER+ 18% & PR - .  Just got my Her2 Results today Positive (FISH)

    So I am in a similar dilemma as all of you. (small Tumor- Chemo not really a great Choice because of size 1.2mm)

    What have some of you decided on?

    Onco thinks I should not take Tamox because of a TIA (mini Stroke) I had years ago.  Im premenopause...So looking at Zoladex ...And Herceptin???

    If I am a BRAC carrier I will have my Ovaries out...Wont find that out til the 1st week in May...

    (I am having a Bilateral Mastectomy on May 22nd)

  • prayer
    prayer Member Posts: 77
    edited April 2008

    I had chemo for a 7mm (yes mm) grade 2 tumor.  Actually it was a border 1/2 grade.  diagnosed at 35.  Don't fool yourself on size, the pathology of the tumor is much more important.  Her 2 likes to move.  That being said, I chose to hit it with everything I had, as quick as I could.  I did AC x 4 and a year of herceptin.  I wish I would have done taxol as well, but I did chemo before that evidence came out.

    Good luck on your decisions.  

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2008

    Thanks Prayer.

    I wish they would have had enough of my tumor tissue left  for the Onco test.

  • otter
    otter Member Posts: 6,099
    edited April 2008

    Dejaboo, I'm glad you found this part of the BCO boards, because I was running out of ideas for you.  I was just going to ask whether you'd had an Oncotype test done.  I guess not, huh?

    So, basically, with the Herceptin + Zoladex, they are suppressing your ovarian function (to decrease the amount of estrogen you make) and blocking the HER2 proteins in any stray tumor cells.  That is sort of a "Herceptin-only" chemo regimen, with an estrogen blocker.  Since your tumor was so small and was grade 1, that sounds like a reasonable approach; but I honestly don't know.  I will keep looking, though.  I haven't done any lit searches yet (Medline, PubMed), which is how I usually investigate things.

    There are a few women on these boards who have ER- PR- HER2+ tumors and are getting more aggressive chemo protocols, like TCH (usually that's Taxotere/Carboplastin/Herceptin, I think).  Since your tumor is/was ER+, you have the additional weapon of estrogen blockage that they don't have.

    My tumor was ER+ PR- like yours, although it was HER2 neg.  There was some discussion among my oncos that the PR- status complicated things, and it might mean I would  need a more aggressive approach than if it had been ER+ PR+.  That was one of the arguments my first (former) onco used to support his recommendation of chemo.  I did have a much bigger tumor than yours, though (1.8 cm), and it was grade 2; plus my Oncotype score was 26.  So, I'm in the middle of a 4-cycle Taxotere/Cytoxan regimen.

    When will you have to decide what to do?

    otter 

  • flyrzfan
    flyrzfan Member Posts: 557
    edited April 2008

    cindy ~ i have not much more to add...i too am +++ with an elstons grade 3, 1.9 cm tumor. very fortunate no node involvement...oconotype testing is pending-it will finalize plan for chemo...right now looks like it will be 4 weeks of tc and 52 weeks of herceptin based on the pathology alone. the combo score makes an aggressive attack now my best shot at complete recovery from all research i have done. each path is personal one but please ask any questions you have so we can help you with your decision...best of luck to you....bonnie

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2008

    Hi Otter,

      Thanks for your input.

    (I dreamed my Onco score was 10- The Night before they called to tell me - there wasnt enough tissue to do the test)

    Hmmm- I guess I wasnt told when I had to decide/start.   Do they usually tell you that?  Or must we ask.  I didnt think  to ask.

    My Onco did say she wanted to see me again after my Surgery...She said after I am healed a little...Like Mid to late June (id say about 1 month after BPM)

    And since I am waiting on the BRAC results (should be in around May 7th)   That might be a deciding factor on Zoladex or not 

    My Initial Surgery- Lumpectomy & SNB was April 1st...Does that give me a time frame for any of this?

  • mary6204
    mary6204 Member Posts: 373
    edited April 2008

    I just stumbled across this discussion mostly about herceptin.  I didn't realize there was so many factors involved.  I am non-hormone receptive, but positive for herceptin.  I was told at one point my cancer was stage 1 and my score was 17 but now I'm wondering if I'm wrong.  I didn't know that it was unusual to be Stage 1 and yet herceptin positive.  I am on TCH which is Taxotere, Carboplatin and Herceptin and I've had 2 of the 6 treatments.  I guess I have some new question for my doctor next visit.

    Mary

  • MarieKelly
    MarieKelly Member Posts: 591
    edited April 2008

    Mary,

    You said "I didn't know that it was unusual to be Stage 1 and yet herceptin positive."

    It's not unusual at all to be STAGE 1 and Her2 positive. I think maybe you're confusing stage with grade. What IS unusual (VERY unusual) is be GRADE 1 and Her2 positive. So unusual in fact, that some consider the finding of a FISH Her2+ in a confirmed well differentiated, grade 1 IDC to fall within the realm of false positive results and feel that Her2 testing on well-differentiated tumors is unnecessary.  Even FISH testing does, on rare occassion, yield  false positive results. In my opinion, it would be wise for someone with a grade 1 tumor being labeled as Her2 positive to have the grade re-evaluated by a different pathologist to be sure it really is grade 1.

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2008

    Thats a good Point MK.

    I will call on Monday &  have my Her2 sent to another Place...I think I will also have them send out the ER/PR so I can have that re looked at somewhere also.

    How does one go about requesting this & do I decide where it is sent?  Or does my Onco?

  • Christianne
    Christianne Member Posts: 76
    edited April 2008

    I am getting scared about my onco results and chance for recurrence.  I have read all of your posts and I seem to be the only one with a HER/2 score of 3+.  I am Stage 1 grade 2. 

    Does anyone out there have a 3+ and came back with a low onco score? 

  • CindyB
    CindyB Member Posts: 43
    edited April 2008

    I actually didn't have an oncotype test done.  My oncologist did not see it figuring into the treatment and it hasn't been researched with Her2 + findings.  We are doing more aggressive treatment based on Her2 positive (way over 3+).  Because it is so rare to be grade 1 and Her2 positive, we confirmed both at my local treatment center and at Mayo.  Mayo is more precise in their assessment and give a ratio - mine was 12.9, which seems to be about as high as I have seen on most postings.  But my oncologist said that they really aren't sure what that ratio implies for the prognosis because it's essentially an "eyeball" test.  They look at the cells in the scope and count those impacted by Her2 vs. not.  How on earth it could be that high and not be grade 3 is beyond me.  It may be that we got to it very early (my tumor was 7mm) and/or my personal theory is that there is additional info about Her2 (by the way there is Her1, Her3, and Her4 too that they're doing research on) that we just don't understand that creates a situation like mine - but pure speculation on my part.

    My treatment is docetaxel and carboplatin x4. We first talked about a series of 6 since that's what's been most researched but decided with node negative, <1cm cancer, 4 would get the desired result.  Herceptin weekly during chemo and every 3 weeks for the rest of a year.  Radiation after chemo and hormone therapies to suppress estrogen and progesterone.

    Well, that's probably enough from me and more than anyone wanted to know.  At some point, I decided that I need to be informed enough to ask intelligent questions of my oncologist, but I'm not an expert and need to let her be!

    Best of luck to all!

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited April 2008

    Hi Cindy - I'm glad you had most of your questions answered. For the record - my oncologist was quite surprised when my Fish report came back Her3+ since my tumor was small, well-differentiated, Stage 1, Grade 1, and just .9cm. I opted for a mastectomy to hit it with everything I got - and was so happy to think I only need the Arimidex orally for five years (I'm 53 and post-menopausal) - but to my BIG disappointment, had to reorganize my brain to accept my onc's recommendation (after a second Fish test at a different lab confirmed that my Her2 expression was over 4) - so last week he started me on Herceptin and Navelbine every two weeks for 4 months, then continue on Herceptin every two weeks for a year, with the Arimidex. My Oncotype DX was 23 (risk of recurrence at 14%) - intermediate - so that was a deciding factor since my onc believes this treatment will reduce my risk by half down to 7%.

    I feel like I'm the only one on this board who's on Navelbine.....it burns your veins, so I need a port installed (next Wednesday).

    Cindy - did you get your heart tested - what was your Muga score? Mine was 67% - be sure you get that done before starting on the Herceptin. Good luck to you with your treatment!

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