Explanation of HER2+ Required

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My wife's pathology indicates:

ER+8

Projesterone positive

Grade 2

HER2+  with FISH TEST arranged

Lump 11 mm on ultrasound and 15mm on mammogram

I don't understood how good or bad this overall pathology is!  One doctor said the outlook was excellent.

The surgeon to be, is postponing surgery for at least 3 months due to C.V. (and who knows thereafter) and prescribing an AI.  This implies surgery is not too urgent.  However, I found that another hospital is prioritising HER2 patients.! I am a little confused.  Why has the surgeon to be, come up with a treatment plan ie no surgery and an AI when the FISH results are a week away?

From my reading I note that HER2+ is considered borderline so a FISH TEST is necessary ie 

"The IHC test uses a chemical dye to stain the HER2 proteins. The IHC gives a score of 0 to 3+ that measures the amount of HER2 proteins on the surface of cells in a breast cancer tissue sample. If the score is 0 to 1+, it’s considered HER2-negative. If the score is 2+, it's considered borderline. A score of 3+ is considered HER2-positive. If the IHC test results are borderline, it’s likely that a FISH test will be done on a sample of the cancer tissue to determine if the cancer is HER2-positive".

What is HER2 borderline?  Can the result be NO HER2, or is there only HER positive or negative?  How serious or not is all this?  I am getting conflicting feedback!

What are the treatment implications?

Anyone with direct experience of this puzzler who can explain it to me?

D

  • the ER 8 means 100% estrogen positive which is excellent as they can stop you estrogen with tablets thus starving the cells.

    As for the rest will tag as he is in the know xx

    Helen
  • FormerMember
    FormerMember in reply to Snowys Mum

    Ask what difference the oestrogen drugs will make? I went through hell and the difference on survival rate was 2%.

    Respect to Dreamtheif but he hasn't done the Hell.

  • Hi 

    my story on profile I had masectomy first then results of Her 2- positive I will leave it up to to discuss all the technical side as he is very knowledgeable,

    To put HER2 positive into English it means the cancer can recur. 

    BUT it can be treated . So after my op I had chemo didn't need rads but now have Herceptin injection every three weeks for a year . Also a Six monthly infusion all to protect me  Belts and braces .

    This treatment is very successful.

    I will give you the same advice I give to new members on this site ...Breathe ! You've come to the right place for answers and support from people who have been there . 

    Please don't google it's mostly out of date and paints scary pictures .

    Take one day one step at a time don't let your brain leap too far ahead deal with NOW!

    This is the worst time the waiting for results ..once you have a plan things do get better because you know what is happening .

    Also adding CV in the mix must be adding to the rollercoaster .

    take care keep posting you will get answers 

    margaret x

    One step at a time and ...Breathe !
    xoxox
    Margaret
  • Hi

    Mine was borderline HER2+. Research shows that there is some doubt whether Herceptin is of any benefit in borderline cases. My oncologist confirmed this, but that he would be prescribing it anyway. I had to stop after 12 of 18 due to heart issues (caused by chemo, not herceptin), this with full discussion and agreement with oncology. I'm still here, and clear, 3 years on.

    The ER8 means oestrogen killers such as Tamoxifen will be of enormous benefit, and may well be sufficient to hold it at bay for some time.

    That said, try not to get ahead of yourselves. And as others have said, please don't ask Dr Google. He is usually out of date, often wrong, and sometimes just plain evil!!

    One step at a time, and trust that your team will be doing the very best they can for you in spite of these trying times.

    Hug?

    Karen 

  • FormerMember
    FormerMember

    Morning 

    Your wife's results so far read well, but the HER2 result is a 'biggie' regarding treatment regimes. If HER2- negative and grade 2 chances are chemotherapy may not be offered depending on other conditions like any lymph or vascular invasion and whether this is LCIS / DCIS (lobular or ductal in situ) or classed as invasive.  Maybe your wife would just need hormonal therapy tablets long term and radiotherapy with surgery slipped in at a suitable time. Has it been mentioned she would have been offered chemo irrespective of this HER2 result - and the results are to confirm or rule out the addition of Herceptin and/or Perjeta for the her2+ only ?

    The IHC test is always done first as it is the quickest and cheapest - If the IHC comes back as #2 this is inconclusive/borderline so the tissue is put forward for the FISH test which takes longer but is more accurate. Needing both HER2 tests carried out is the main reason some pathology reports take longer to come through.

    Because of the parameters It is uncommon for a FISH test to return as uncertain or indeterminate. If this does happen, she may need to have another biopsy to repeat the test on a different sample area.

    J was what is termed triple positive ER/PR and HER2+ and had 6 x chemo sessions 18 x Herceptin (Perjeta wasn't around back then in 2012) followed by 5 years of Letrozole tablets. Initial treatment period of around 15 months; of which the chemotherapy took up around 18 weeks. It is a long drawn out rubbish timeframe (especially the chemo period)

    As HER2+ positive is classed as aggressive also having a higher risk of recurrence and heaven forbid secondaries they hit it hard to minimise this risk and the newer targeted biological therapies like Herceptin and Perjeta are game changers for what used to be considered one of the nastier types of BC to get.

    Fingers tightly crossed your wife's HER2 result comes back as negative, but if it is positive this is still highly do'able albeit a more rocky road to recovery.

    Best scenario is HER2- neg, daily tablets for 3 months then review her surgery options re Covid, so hope this is how it pans out for you both.

    Hope this is of some help, G n' J

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you dreamthief,  this is very helpful for me as I am waiting for my HER2 results.

    L x

  • Many thanks to everyone for replying,  and G n'J for the detailed technical info.  It is much appreciated.  

    Last night was quite sleepless, particularly after the fuller implications of my wife's diagnosis gradually emerged.  The word 'emerged' is appropriate, because we were not  at all fully appraised.

    I am panicking at the moment because due to an inherited eye condition, my wife has had 2 corneal grafts to restore her vision.  The last one was only just about 4 month ago.  From what I have been reading the targeted immunotherapies could potentially destroy the grafts and cause blindness.  
    The post biopsy consultation was by telephone, and I remain thoroughly dissatisfied with the consultant surgeon's input.  I had prepared my questions quite well, but had not anticipated the HER2 factor.  This was not at all explained, I had to find out about it myself!
    The surgeon said that she was not aware of the negative interaction on the eyes of AI and hormone therapy.  She never even thought of the impact of the biologicals, on what is donor tissue.  I should not be having to research and alert them to this.
    All that was on offer as a care plan was an AI as a holding strategy. We were told that my wife was not a priority and that surgery may be a possibility in about 3 months.  Of course it is all CV dependant.  I was really dissatisfied and concerned that this minimal care plan had been devised by the MDT without the FISH test even being available!  I am aware from another regional hospital that HER2 patients are still being prioritised for surgery.
    I understand that before Herceptin and Perjeta etc the prognosis for HER2 positive cancer was not so good.  I really need advice on the best strategy for treatment for the different HER2 outcomes.  I know it is a difficult ask Dreamthief, but can you suggest the best possible strategies, in light of the above information?  Input for others with experience of HER2 is also very welcome.  I need to get my head around this.
    We both feel like we are drowning!!!  I have never felt so helpless and hopeless.
    D
  • I forgot to mention my wife's cancer type was Invasive Ductal Carcinoma.  The ultrasound indicated no axillary lymph gland involvement, but I don't know how reliable this is.

    D

  • Hi Silverberg

    My wife is not at all keen on the anti oestrogen drugs.  She has been on ERT due to a hysterectomy and bi lateral oophorectomy.  She is really worried about the double whammy and the awful experiences of those like you.  Having looked at the O.S. data in the NHS Predict Nomogram, she is currently talking about quality versus quantity of life.  As you have indicated the % benefit appears minimal for overall survival.

    D x

  • Hi Dedalus,

    I was diagnosed with Er, Pr and Her2 positive cancer in 2018 (sometimes called triple positive breast cancer). 

    I had a small tumour (14mm) and I had a lumpectomy before the Her2 results came in. It came back as Her2 positive and so I was strongly recommended to have chemotherapy and herceptin (they won’t give herceptin without chemo as it’s not as effective). 

    What usually happens now is that people with her2 positive tumours are given chemotherapy, herceptin and perjeta before surgery. The common opinion is that herceptin levelled the outcomes between her2 positive and negative cancers. Many results with perjeta added in are excellent. Because people have chemo before the surgery, the effects are measured. Quite a number of people have a complete response, so when it comes to the operation, there is no solid tumour to remove. 

    It does mean more treatment though.

    I take the hormone treatment. I had not gone through the menopause before and so the side effects came on quickly, but for me, they have subsided. 

    I also take Neratinib (extra anti- her2 treatment, taken for a year after herceptin if people did not have perjeta).

    It could be that I don’t need the hormone treatment, it could be that I don’t need the neratinib. Each extra treatment builds and gives a lower chance of recurrence. Personally, I want to do everything possible to prevent that happening.

    There is an awful lot for you to take in. We understand the terrible shock. It does get easier when treatment gets underway. Waiting is very hard and I can imagine that it is even harder at the moment. Try not to panic. It sounds as if it has been caught very early and I’m sure the medical team will be working hard to give the best treatment.

    Best wishes,

    Sarah x