Anyone else with pathology results like this?

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Siren40
Siren40 Member Posts: 31
edited December 2014 in HER2+ (Positive) Breast Cancer

Hi guys,

Long story but I'll try to keep it short! Got the final pathology reports from my BS Wednesday. Appears I am triple +. Had a long discussion about treatment with Perjeta, herceptin, and chemo. Felt I had a clear plan in place. Not so fast......

I've been a nurse for a long time and already had my MO picked out. Great doctor and friend. I called him after my meeting with the BS and gave him the news. He had a ton of questions about the pathology and he's kind of stumped. 

My tumor is small (1.5 cm) and listed as a "low" grade two due to miotic division only being a 1. It is additionally very ER/PR positive at 90% for both. Ki67 very low at 5%. He felt the characteristics of this cancer did not fit with HER2. He asked me to read every word to him in the HER2 result section. It seems they did ICH first which was inconclusive, so they repeated with FISH. under FISH criteria, 2.0 is the cutoff for +. Don't you know I am EXACTLY 2.0? His response was "What the fu@$?"  

He's fascinated by this. Says I have primarily a "wimpy" cancer and HER2 is not associated with these characteristics. He told me he needs a few days to investigate this further and think it through. Luckily he was headed to a conference and was going to bounce this off of some of his colleagues as well. I'm meeting with him Monday to discuss further. I'm sure he will turn every stone over for me and I'm thrilled to have him. 

Just curious if anyone else had such wacky results?

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  • Maureen1
    Maureen1 Member Posts: 614
    edited October 2014

    Siren40..my pathology was pretty straightforward, I'm sorry yours is not clear...the last thing we need is more unknowns...so glad to hear your MO is a trusted friend and he is doing his best to get you the answers you need.,..let us know how it goes. (((Hugs))) Maureen

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2014

    I am a triple positive with a mixed pathology bag - strongly ER+, weakly PR+, strongly Her2+, grade 3, with mitotic rate being the most sluggish of the three components, high Ki67.  I had a slightly larger than 2cm mass, with 20 isolated tumor cells in my SNB - so "clinically" node negative, but because I was Her2+ my BS and MO were non-negotiable on axillary clearance surgery (five weeks after BMX) and that surgery revealed a .5cm positive node further up in the axilla after removing levels 1 & 2.  It looks like you are equivocal/borderline on your Her2 status, which maybe fits better with your grade, but they are now starting to offer Herceptin to folks in this situation.  I also participate in a Her2+ vaccine trial for recurrence prevention and for those who are histologically A2- the AE37 vaccine was being offered to those who expressed Her2+ at 1+ and 2+.

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  • Siren40
    Siren40 Member Posts: 31
    edited October 2014

    thanks for your insights, ladies! Maureen, it is really frustrating but I'm just going to count my blessings and put my faith in my cancer team. All I can really do :)

    Specialk, I believe the herceptin is a given. His concern is the Perjeta. While I am barely her2+, he's not sure I would benefit from it. There is no clinical data for someone like me, and he's worried about the risks. If the rest of my path report indicated an aggressive cancer he would be more comfortable, but I don't seem to fit the profile. It's funny because I got a call from the nurse navigator and she even brought it up. She's never seen this either. So much fun for me!

    That's great about your trial. I'm praying it has a successful outcome for you and all the future women you will be helping!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2014

    siren - I also wonder what your insurance will say concerning paying for Perjeta, as the FDA approval is pretty specific about the criteria for eligibility for use.  There are some people who post here who have oncologists who have been able to get it approved adjuvently, and/or for patients who don't meet the criteria in terms of tumor size either.  A conundrum for sure!  So far, so good for the trial - here is the synopsis for my arm - it has been in the news lately.  I was motivated to do this trial (even though I have to fly up to Washington, D.C. to participate) for a number of reasons - I did want to personally benefit if possible, I did want to advance the science for those in the future, and I wanted to contribute in the same way as the women did who were able to help bring Herceptin to the market so that it was available for me:

    http://blog.dslrf.org/?p=2161


     

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  • Kthielen
    Kthielen Member Posts: 194
    edited October 2014

    specialk- would this vaccine replace Herceptin or would it be given in conjunction with Herceptin?  I  wish I new about the trial!  Would love to participate:)

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  • Siren40
    Siren40 Member Posts: 31
    edited October 2014

    So the saga continues..... The MO is not on board with Perjeta before surgery. He says there is zero data supporting it's use in a patient like me with such a small tumor and borderline HER2 receptors. He also asked several colleagues to review my path report and they agree with him. While he will treat me with herceptin, he really wants surgery and full pathology first. He spoke to my surgeon and she's adamant about the Perjeta. Long story, I called in a few favors and got an appointment tomorrow with another surgeon for a second opinion tomorrow. She's actually one of the top ranked in this field so I hope she can shed new light on this. I just want a plan already!

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited October 2014

    It may be overkill, but if your insurance will cover perjeta and Herceptin, I would do them.  There are studies showing these are very beneficial even in Her2 that don't rise to the level of being considered Her2+.  There is a woman on the boards named Tectonic Shift who is really an expert in this.  I believe she is currently getting both even though her tumor did not test Her2+.  If you really want a good source of information on this, I would PM her.  Her tumor was a good bit larger than yours, so your situations are very different, but she is a great source of information on this specific topic and very willing to share.

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  • ben50
    ben50 Member Posts: 46
    edited October 2014

    Whoa what a tricky spot to be in! Moderately Her2+ is always a little messier in regards to treatment. You definitely do not normally see that low of a Ki-67 and grade with Her2+ -- it's just part of the game to have a high grade tumor with Her2 as it is the main mechanism that speeds everything up. I can understand why your team would question the benefit of supplementary Her2+ targeted drugs in your case. Either way, the cup half-full is that your cancer seems slow growing and small, and being highly Hormone Receptor+, you can bet estrogen suppressors will be quite effective in your case. You'll be just fine! Also, in following the good advice of other posters, when you have a treatment plan established I would ask your medical team about potential trails you can participate in. A new drug in development, NeuVax, seems like it would be a good fit with your pathology. Maybe see about getting on the Phase III trial at some point? Lastly, over the next few weeks, you'll have a ton of things thrown at you, including many doctor appointments and having to make difficult decisions about your life. Remember to take moments for yourself and to breath. You caught it early and you're in a good place.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2014

    kthielen - this is a recurrence prevention vaccine, so it would be adjunct to Herceptin and any other adjuvant treatment.  I had to enroll in the trial within six months of finishing Herceptin.  The phase II part of the trial I was enrolled in has ceased recruiting and they have published preliminary results, but to my knowledge phase III has not yet started to recruit.  Phase I was at the U.S. Military Cancer Institute and only involved military dependents in San Antonio, phase II was widened to more locations - don't know how they will handle phase III, but the phase II results so far indicate that a phase III study is warranted.  If they initiate phase III soon you would have the opportunity to enroll if you meet their criteria since you are receiving Herceptin right now, right?

    Here is the link to phase II:

    http://clinicaltrials.gov/show/NCT00524277

     


     

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2014

    SpecialK

    Biopsy came back positive for cancer two weeks ago (estimated 1 cm, er-(0), pr-(+5), K-67 (70%), HER2 (3+).  Surgery is Friday.  I am very interested in the Mittendorf clinical trial you are participating in.  She has referenced the upcoming Phase III clinical trial ( protocol written, Genentech agreed to sponsor). She also spoke on the HER2 (3+) group as a likely part of the new trial. I am wondering how to stay informed about the anticipated time frame.   Do you have any thoughts on how to do that?  Thanks in advance!

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  • CoastalXPat
    CoastalXPat Member Posts: 83
    edited October 2014

    Hi Siren, first, might you be eligible for an Oncotype test?

    So here is just one story of many but it seems worth mentioning. The path results from my needle biopsy came back Grade 1 and Her2 negative (FISH = 1.2), but the path results from my surgery were Grade 2 and Her2 +++. Because of the change in HER2 status, my MO had the tumor tested by both ICH and FISH.  The FISH test went from 1.2 for the needle biopsy to 20.0 for the surgery sample, and the ICH was +++. It was a bit of a whammy, it meant my entire treatment plan had to change with the addition of chemo. Now according to the MO my case is unusual, but I do wonder how often the surgery biopsy & needle biopsy show unexpected differences.

    My treatment included adjuvant Herceptin & Perjeta along w/taxotere & carboplatin (I'm one of those folks that insurance covered - my MO says she hasn't had problems w/this).  My understanding is that the Perjeta is a bit rougher than Herceptin (although nothing like chemo), and the digestive issues I experienced would back that up. There are a LOT of anecdotes on these boards about Perjeta & diarrhea, oy.  Plus there is added cardiac risk. I should add that an MO I spoke with for a second opinion felt the Perjeta wasn't really needed for my stage I situation. But I'm personally glad I did it - I only had four rounds, administered w/the chemo. I'm now on Herceptin only.

    So again, this is just one person's story, but I wonder if it's these sorts of thing that is making some of your Dr's cautious re. Perjeta. I wish you the best of luck as the "journey" progresses (with minimal HER2 involvement if possible!).

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2014

    maggie - you would not participate in this trial until the conclusion of your Herceptin if they structure it the way they have for the first phases, so more than a year from now.  I asked my coordinator last time I went for the booster if she knew when phase III would begin to recruit and she didn't know then (July) but I go for my last booster in December so I will ask again.  If a phase II trial location is close to you checking with their research coordinator periodically is one option.  With trials you also have to keep in mind that you only have a 50/50 chance of getting the actual vaccine, so you have to accept that you won't know if you are getting potential benefit.

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  • Kthielen
    Kthielen Member Posts: 194
    edited October 2014

    specialk

    Thanks for the info and link:) I am still on Herceptin until February so possibly won't work for me.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2014

    kthielen - I think that actually works in your favor - phase III has not opened yet so you have time - they will recruit for a number of months/years.  I had finished Herceptin in Feb '12 and enrolled in June of '12.  If they follow the same protocol you would have until June '15 to enroll.

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  • Siren40
    Siren40 Member Posts: 31
    edited October 2014

    Thank you all for your insights! I know this is not a subject anyone wants to become an expert on, but I'm so grateful for all of you. I met with the new surgeon yesterday and loved her. She was so kind and very knowledgeable. Some points:

    1. She assured me this tumor is very small. Right now it's measuring 1.5 cm and she said the tech who did that measurement gave a very wide berth into healthy tissue. She showed me the US pictures and explained everything. She likes it when they measure this way because the likelihood of it being much bigger after surgery is very low. She anticipates this not going over the 2 cm mark, keeping me a stage 1. She also pointed out that this is a DCIS/IDC mixed tumor, and while she won't know percentages of each until after surgery, she said recent research shows these types of tumors have even better outcomes than just IDC. 

    2. She reviewed my records and did a complete physical exam. She says based on her findings and past reports she anticipates at most a 20% chance of any lymph node involvement. 

    3. She is concerned about the accuracy of this HER2 result. She has requested my slides to be retested at another lab and will send my tumor after the lumpectomy to be tested in no less than 3 areas. This will give us the most accurate results on this finding. She said many tumors have at least some of this protein present and it can vary throughout areas of a tumor. 

    4. She agrees no Perjeta. Regardless of the HER2 status, my tumor is too small and lymph nodes don't seem to be involved. Even if insurance would agree, the benefits do not outweigh the risks. 6 months chemo, 6 weeks radiation, and tamoxifen for 10 years would give me close to a 100% survival. She agrees with the MO that this is not an aggressive cancer, and with ER and PR receptivity at 90% each this is a hormone driven cancer. 

    5. Oncotype will be done as well for everyone's peace of mind. 

    I'm looking at surgery possibly as soon as Tuesday, then chemo to start almost immediately. I feel so much better now that at least we have a plan! I'll keep you all updated!

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  • Kthielen
    Kthielen Member Posts: 194
    edited November 2014

    thanks Specialk! I thought you had to be on Herceptin at the same time.....I will keep my eye out for Phase 3:)


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  • april25
    april25 Member Posts: 772
    edited December 2014

    Test results--I have a hard time interpreting them!

    At first my HER2 status (from core biopsy) was inconclusive. They said they sent out for a FISH. I'm not sure if this is the FISH or not, but my MO said it's definitely HER2+

    The only thing I can find about it on his Visit Summary is:

    ----------------------

    HER2 SIGNALS, TOTAL, BLD/TISS, MOLGEN

    254

    CEP17 SIGNALS, TOTAL, BLD/TISS, MOLGEN

    161

    HER-2/CEP17 SIGNALS, BLD/TISS, MOLGEN

    1.58

    INTERPRETATION Comments: POSITIVE (Dual-probe HER2/CEP17 < ratio 2.0 with an average HER2 copy number >=6.0 signals/cell). COMMENT 16 Comments: AVERAGE HER2 COPY NUMBER / CELL = 6.35. If the sample submitted is a needle biopsy this evaluation may not be representative of the entire tumor. and if clinically indicated, it might be desireable to perform FISH testing on resection sample. Nomenclature: nue ish (D17Z1x2 approx. 8, ERBB2x2 approx 18)

    ------------------

    Does anyone know what this means??? I should ask docs but it is weekend so no answers... I had a CORE BIOPSY, not a needle. They told me they were doing a FISH. Is this it? Does this tell me anything about my HER2+ ?


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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Hi april25! As you'll read in our main site, "the FISH test results will tell you that the cancer is either "positive" or "negative" (a result sometimes reported as "zero") for HER2". More detailed info here: FISH Test (Fluorescence In Situ Hybridization). Hope this helps!

    The Mods

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  • april25
    april25 Member Posts: 772
    edited December 2014

    Thanks for the link, mods!

    Ack--It says there can be false results! That's not reassuring! Particularly as I'm considering neoadjuvent chemo!!!


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