HER2 Positive 2+

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Jaydee
Jaydee Member Posts: 74
HER2 Positive 2+

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  • Jaydee
    Jaydee Member Posts: 74
    edited February 2008

    I had a Lumpectomy last September for a small 5mm invasive cancer with associated DCIS - entire tumour removed with clear margins and sentinel node negative.  Told tumour was very slow growing type and given radiotherapy and commenced Tamoxifen.  My question is concerning the fact that everyone else with HER2+ seems to be given Herceptin - I was told I don't need it - I am ER & PR+ve

  • justmp
    justmp Member Posts: 2
    edited February 2008

    Get a second opinion, it will make you feel better. Try Sloane Kettering's web site, it is good. They have a good news letter also. Do you play scrabble on word biz? I play someone with same name. I am a 6 year survivor, was also positive chose not to take hercepton, just a personal choice. It was not offered until after 4 years free and no studies show the results that far out.

  • Jaydee
    Jaydee Member Posts: 74
    edited February 2008

    Hi justmp

    I did ask and got a second opinion and they said my tumour was not aggressive - leaves me wondering then having read various conversations on this site why I am HER2 +ve - maybe something to do with being borderline - always find something to worry about since diagnosis!

  • 3xacharm
    3xacharm Member Posts: 2
    edited February 2008

    Hi,

    I was not given Herceptin until my second time diagnos, which I had for a year after my mastec. every 3 weeks , however I have now been diagnos. with breast cancer for 3rd time  in 6 yrs, in the same breast , now having a partial mastec. no reconstruct yet and obviously the Herception did not work now going for Tykerb

  • JoniB
    JoniB Member Posts: 346
    edited February 2008

    I just found out I was HER2 positive today.  I am being treated at Sloan.  My medical oncologist (on the phone today - my appointment is not until March but I was inquiring about my pathology since surgery was done at another hospital and Sloan did not have the results when I had my last appointment) said that for me the side effects of Herceptin would outweigh the benefits for me.  I was 3mm part DCIS part invasive - biopsy removed entire invasive portion, lumpectomy removed the DCIS.  Clear margins and sentinel node negative.  Am curently having radiation and am very concerned now that I know my HER2 status.  I am low ER/PR but they are re-doing the test at Sloan using my slides.  

  • jerseymaria
    jerseymaria Member Posts: 770
    edited February 2008

    hi...i just finished a year of herceptin after ac and taxotere, plus radiation. i am her2+++.  the key may be the node status. i had 9 out of 27 nodes positive which along with the size of the mass put me at stage IIIB.  my cousin had same pathology but a smaller tumor and no positive nodes. she had mastectomy and radiation but no chemo or herceptin.  i know the positive nodes are the key to chemo vs no chemo but perhaps that also holds true for herceptin.

    maria

  • Jaydee
    Jaydee Member Posts: 74
    edited February 2008

    Hi to all,

    Have recently been trying to gather as much information as I can on whether Herceptin is always given in HER2 positive diagnosis and realise that many may under-estimate the side-effects of taking Herceptin if not necessary.  At grade 1 with a very small tumour and clear margins, no vascular involvment and neg nodes, I have again been re-assured that ER & PR+ve tumours are best to be treated with radiotherapy and Tamoxifen or an AI.  I hope I am not wrong and am seeing my Surgeon next month but dreading the first mammogram which I should have in July.  I also had intra-operative radiotherapy at the time of my op - that is in the tumour bed.

  • Jenniferz
    Jenniferz Member Posts: 541
    edited February 2008

    Jaydee,

    I am er/pr+, her2+.  I had idc and dcis in the left breast, and had a maste.  Because my tumors were so small and margins and nodes were clear, I had no rads, no chemo, no hercepting.  I am however, on Femara for at least 5 years. Two oncs. said what you have been told---no chemo or rads for me because of the maste., and that I will be fine.  

    I am 221/2 months out (when will I start stating this in years? hehehehe) and just want you to know that I am  NED. I keep hoping I stay that way!

    Best of luck with your surgeon's visit.

    Jennifer 

    PS - Maria.....I was told that since no chemo, no herceptin. Please ladies...bear in mind that this was almost two years ago (There, I said it!!) and things may have changed since then...maybe they do give herceptin alone.  They didn't when I started this journey. 

  • KathyL
    KathyL Member Posts: 534
    edited February 2008

    HI ladies!  Just thought I'd chime in since I'm Her2+ also.  As far as I know, herceptin is only given with chemo (though I've read some anecdotes that there are places starting to do it without, but I don't know where they are). 

    Use of chemo depends on the size of your tumor (usually used if >1cm), and if nodes are involved (usually used if pos. nodes, though some neg. node cases can get it too... read on). 

    ER/PR status determines whether use of drugs like tamoxifen will be helpful in using against recurrence.  In your case, Jaydee.. you could benefit from their use.

    By "slow growing", I assume you mean the grade of your cancer must be low, like a 1 or 2.  This is how much your cancer cells look like normal cells (one-- it's pretty close, 3--- nothing at all they are some "crazed" cells!).  As I understand it, chemo use looks mostly at tumor size and node involvement, not grading.

    But as we know every case of BC is individual.  Here's my story as an example:

    I am er/pr negative (so use of hormones will not help me for lowering recurrence risk).  My cancer was 4mm with DCIS surrounding it.  All IDC was removed with lumpectomy, DCIS with mastectomy.  Nodes were negative with SNB.  So, I shouldn't have needed chemo, which meant no herceptin, too.  A second opinion/look by UPenn's pathology lab found some additional IDC areas of 1-2mm each, all in my original lump-- so then they said I had "mutlifocal IDC" in the DCIS.  At first I was told since nodes negative and 4mm area only of cancer... chemo would be greater risk than benefit, so I would not be doing it.  Then, when determined I actually had multifocal IDC, and therefore a larger area of cancer but one that they couldn't exactly quantify now... chemo would be a much more prudent choice since I was HER2+ and thus had a higher risk of recurrence.  If chemo was going to be done, then herceptin would be part of it.  I am currently halfway through chemo with concurrent herceptin infusions.  Herceptin will continue by itself after chemo for a full year.  They also took into account that am 37. Being young with an aggressive cancer type (HER2+ and grade 3), they felt it was best to hit it now with everything and avoid recurrence in the future.  Even though my SNB was negative.. you never know if one little cancer cell got through.

    So, I'd say, ask questions and maybe get another opinion or another pathologist to verify the original dx and typing.  But remember, you still have the benefit of tamoxifen or other similar drugs (see Jenn Z above) to help you out if you don't get chemo/herceptin.

  • Jaydee
    Jaydee Member Posts: 74
    edited February 2008

    Hi,

    Thanks for your responses - isn't it amazing how every breast cancer is different.  Yes my tumour was a grade 1 and apparently the cells were behaving as almost 'normal cells' (despite being HER2+).  Think it helps if the tumour is small and clear margins are obtained - I had a Lumpectomy and was node negative.  When I started reading the posts here I was disturbed about the fact that everyone, or almost everyone, thought that HER2+ meant automatic Herceptin.  I did query my treatment and was assured I only needed rads and Tamoxifen but still worry because my Er/pgr receptors are quite low - 8 & 6% respectively.  Like everyone else I go from feeling I've done everything I can and at other times feel a rising panic in case my treatment is not sufficient.  Kind thoughts to you all.

  • mimi1030
    mimi1030 Member Posts: 700
    edited February 2008

    My mom had DCIS left breast with .5mm of invasive cancer.  She is Her2+++, no node involvement, mastectomy, clear margins.  That was in 2004.  At that time they didn't give Herceptin to people who were node negative, so because of being her2 the tumor board decided she should do chemo, she did 4 rounds A/C.  In Sept 2007, she was dx with Stage IV mets to liver and bones.  She is now on Herceptin/Taxol/Zometa, she is doing very well....cancer has done a dramatic turn around and she only has a few spots left to go and she will be NED.

    I would definitely pressure someone into giving you Herceptin, if you are Her2++.  I wish they had given it to my mom.


    Take Care,

    Michelle

  • oldcat46
    oldcat46 Member Posts: 53
    edited February 2008

    I was told I would get Herceptin just by virtue of the fact that I was Her-2+.   Dx last Aug. with IDC, 1.7 cm, stage IIa, grade 2, 1/10 nodes, ER/PR+.   Don't know if my one pos. node was a factor, but everyone I know with Her-2+ got this drug.  I heard it was approved around 1998 for advanced bc and 2006 for early stage. 

    Jaydee, I'd definitely get a second opinion for your own peace of mind.  As for side effects or fears taking it, I've been on it for around 11 weeks -- took it with Taxol which I just finished 2 wks ago.  They gave me a loading dose of Herceptin the first time (90 min) and said I might have flu symptoms -- I didn't.  Every time after that has been 30 min and so far no real symptoms.  I'll take it until next Dec.

    The web sites I've checked say Herceptin can cut the recurrence rate of bc by 52%.  Don't know if this helps but good luck to you ...

    Mary

  • suz41
    suz41 Member Posts: 33
    edited February 2008

    Hi ladies,

    I am currently taking Herceptin along with Taxol weekly and will continue with herceptin for a total of one year.  My tumors were 2 cm and under but grade three aggressive.  I was told by my oncologist that Herceptin is now given in early stage BC ( I was stage one, no nodes) in hopes of preventing recurrence.  I had a bilat. mastectomy with clear margins so my understanding was that it was stricly a preventive measure to take Herceptin.  I have had no side effects at all with it.  Hope this helps but as I am noticing, there are so many different cases out there and every doctor has their reasons for prescribing different protocols.  Suz

  • Jaydee
    Jaydee Member Posts: 74
    edited March 2008

    Hi all - I have been to see the Surgical Consultant today, armed with a load of questions about HER2 (I am 2+).  She said that in my particular case where there is a good prognosis that all the factors are taken into account and that the side effects would vastly outweigh any benefit Herceptin could give me.  Should things change then Herceptin would be used but meantime, in consultation with the Oncologist, there is no need to use this drug in my case.  She thinks it is over-hyped in the media making women believe it is a cure-all for any HER2 positive cancers and said there is much research going on into Herceptin and its uses and side-effects.  I must stress that these comments are for my particular case and, of course, given different circumstances Herceptin would be the treatment of choice.  Best wishes

  • pepperpot
    pepperpot Member Posts: 9
    edited March 2008

    Hello,am new to the community .I was diagnosed in may06,aged 44,infiltrating lobular breast cancer,2 1/2 cm lump,grade 3,(aggressive nasty pasty tumor)er/pr+,her2+3, node negative,was so lucky that node negative and it was caught early,had WLE, fec chemo and radiotherapy,was about to have herceptin to reduce the risk of recurrence but muga scan showed the risk to heart problems was greater than having the herceptin,so could not have it,am currently on tamoxifen and am N.E.D..almost 2 years from diagnosis....Am fine and doing well,sending my best wishes to everyone ,Pepper.

  • karluway
    karluway Member Posts: 22
    edited March 2008

     On 2003 I was first diagnosed with DCIS .  Have a lumpectomy and radiation.  Cancer came back last year,same breast, invasive. I have a right breast mastectomy on January 2nd of this year.  The size of the tumor was 0.5 clear margins, negative lymph nodes. grade 2 .  I consulted two oncologist, got two different opinion.  The first one recomended chemo, the second recomended no chemo no Herceptin .  I followed the second doctor instructions, but I am constantly wondering if I did the right thing.

  • ejohn
    ejohn Member Posts: 117
    edited March 2008

    My mom is Her2++ but they won't give her Herceptin because she is fish Neg. Does anyone know what this means? We have been told Herceptin woudn't do her any good because she is fish neg.

  • kcherub
    kcherub Member Posts: 3
    edited March 2008

    Hi!  I thought I would chime in as well...I was diagnosed last March with a 1 cm. (1.4 cm. after surgery) IDC, ER+/PR+ 90%, HER2+, Grade 2, no node/vascular invasion.  So, Stage 1.

    Because of my age (34 at the time) and that .4, it was suggested that I do AC-TH, radiation and tamoxifen.  However, after doing a ton of research (online, friends, universities, oncologists), I determined the MOST important drug for me was Herceptin.  I opted to do TCH (Taxotere, Carboplatin, and Herceptin).  "A" can cause heart problems, and so can Herceptin.  However, the LVEF that Herceptin can cause is usually reversible.  I have been on Herceptin for almost 10 months, and alone since September.

    From what I can tell I have no really problematic side effects from Herceptin.  I get some aches and pains (which I ALWAYS think are mets), and my fingernails are peeling just a bit.  My ECHO/LVEF has stayed at 60 since the beginning.  And, I hate to admit (and please don't light into me), I smoke.

    There are oncologists that will give Herceptin alone, and I would demand it.  I think that the chemo protocol with Herceptin makes sense for those that need chemo (grade, size, age, etc.).  If you look at Herceptin alone, it can still do the job it needs to.  They give it alone for 8 months after finishing chemo, so it does have it's merits alone.  It better!

    Please let us know what you decide.

    Take care,

    Krista

  • kcherub
    kcherub Member Posts: 3
    edited March 2008

    Sorry--I should have added that I had a lumpectomy and 30 rads.  I am supposed to start Tamoxifen, but I am being a bit of a stubborn girl so far.

    Krista

  • Liz08
    Liz08 Member Posts: 470
    edited March 2008

    Hello everyone-

    I'm new here. I skimmed a few of the posts and I'm confused when Herceptin is used.  I was diagnosed with DCIS with a "focus of less than 1mm of microinvasion in greatest dimension".  My cells were high grade with comedo necrosis, Er- & Pr-. Since I had some microinvasion they tested the Her2Neu and it's 3+. Some of the doctors are confused as to why the Her2Neu test was done because it is not supposed to be done for DCIS, since about 80% of DCIS is Her2Neu3+ and relevant to invasive disease only.  My Her3 Neu test was done on DCIS and the micro. My sentinel node was negative. CT scan of head chest, ab, and pelvis and entire body bone scan all normal. I was told that my oncologist does the CT and bone scans for all her new breast cancer patients.  Based on 5 different oncologists opinions all they recommed is 33 Raditaion treatments after my lumpectomy.  I had a lumpectomy on 2/14 and re-excision on 2/28 to clear anterior margin so that skin is now my anterior margin. No cancer was found during the re-excision. All my margins are > 1cm except my anterior but it should be over 4mm. I am 38 years old, a mom of 3 young children ages 10, 6 and 10 months old.  No history of breast cancer in my family. I have an appt. with another oncologist on Monday.  What should qualify one for Hercepitn? Can anyone offer any advice.  Thank you in advance.

  • jeanne46
    jeanne46 Member Posts: 1,941
    edited March 2008

    ejohn,



    The FISH test stands for Fluorescence In Situ Hybridization. It measures the amount of amplification of the Her2 gene in breast cancer cells. When the first Her2 test is done - and results come back equivocal (ex: 2+) it gets sent out for FISH testing. That is a more detailed and precise test that tells whether the breast cancer cells show "amplification" or "non-amplification of the Her2 gene." See the website below to read more about this.



    From my own experience, I would ask the oncologist to have the test done again. 2++ is questionable for Her2 negative. I am not a doctor, nor a medical professional - but have had tests recently that have had conflicting results. One of them is my current Her2 test. Unfortunately, mistakes get made.



    http://breastcancer.about.com/od/diagnosis/p/her2_diagnosis.htm



    Best of luck to your mom.

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