ER-, PR-, Her2+ Roll call
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Beesy, Dutchiegirl, Melbo
Thank you guys for your sharing. Hugs.
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moth also posted a super hopeful article on another HER2+ Thread about just how good outcomes are now for HER2+ — calling it one of the most curable versions of BC. It is well worth a read.
https://community.breastcancer.org/forum/80/topics/825974?page=36#idx_1058
the link to the article: https://dailynews.ascopubs.org/do/10.1200/ADN.22.200872/full/0 -
Beesy, Dutchiegirl and Melbo,
Thank you guys for your sharing. I think I should move forward than worrying about things that already happened. Thanks again. Hug
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Hi - Does anyone else here have super-high HER2 levels?
The reason I ask is, my FISH (HER2 to CEP-17) ratio is 16.1, and copy number (average # HER2 signals/cell) is 29.8.
I've read some articles which suggest that very high HER2 numbers tend to be herceptin-resistant, with decreased probability of PCR. The two oncologists I've seen (both great with great reputations) disagreed, and said they felt high HER2 numbers should have better-than-normal response to herceptin and odds for PCR.
Unfortunately I just had my post-chemo MRI, and it shows that my tumor is still at least 2 cm even after the full course of TCHP.
Has anyone else here had similar (or different!) experience with a high HER2 level?
Sarah
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Diagnosis: Mixed IDC and ILC (with DCIS and LCIS). Right breast (5 cm). Right axillary lymph nodes (several up to 1 cm).
Pathology: ER negative (0%), PR negative (0%), HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
Treatment: TCHP (Taxotere, Carboplatin, Phesgo).0 -
Dear Sarahnh, most probably high her2 ratios mean that disease is aggressive but not that it is her2-drug resistant. Might be that aggressiveness overcomes drug delivery rates. When you say full course of TCHP, you mean 8 cycles? Do you still have power to drop off carboplatin and continue with THP?
Saulius
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Thanks Saulius - that is one of the speculations in the articles I read, that the aggressiveness may outweigh the drug effects. Or it may be a different type of cancer.
I did six cycles of TCHP. I will be getting Kadcyla (TDM-1) after surgery. Unfortunately it seems like doctors only stick with the standard protocols. They don't want to think about weird situations like mine. I will ask about THP.
I don't know anyone with numbers like mine -- and am hoping maybe someone here is in the same boat -- or at least might know of someone in the same boat.
Is there anyone out there?
-Sarah
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Diagnosis: Mixed IDC and ILC (with DCIS and LCIS). Right breast (5 cm). Right axillary lymph nodes (several up to 1 cm).
Pathology: ER negative (0%), PR negative (0%), HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
Treatment so far: TCHP (Taxotere, Carboplatin, Phesgo).0 -
Sarah, I think you are n=1. Us hormone negative, HER+ are rare as it is. Very strong HER+ is rare among the rare. If "They don't want to think about weird situations like mine. ", then they are not good doctors. You might want to seek second opinions from the greatest of breast cancer treatment centers. If I were you, I would ask for aggressive treatment after surgery, especially since there is lymph node involvement. When I read that our kind of cancer likes brain tissue (and already knowing about the blood-brain barrier), I was eager to accept treatment which was aggressive given the small amount of cancer they found.
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From one Sarah to the other,
I have high HER2 and didn't receive PCR. i am getting Kadcyla as well. My onc said they removed all the cancer so with Kadcyla I should be fine. I also couldn't get radiation because I got it 10 years ago for Hodgkin.
I was wondering why TCHP didn't work on me as well as it was supposed to and found this article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC76790...
It is an interesting read. It is about different variants of HER2 protein and their sensitivity to chemo.
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Thanks Mary and Sarah!
I think/hope the two oncologists I've met with are both very good (Tolaney at Dana Farber is my oncologist, I also met with Isakoff at Massachusetts General), and both said the same thing about the high HER2. The plan is to get Kadcyla (TDM-1) after surgery, which is boilerplate for HER2 positive people who don't get PCR.
Sarah thank you for that paper, I hadn't seen it before. It's technical but I do have a math/science background so will spend some time on it. It is amazing how many tests could have been run on my biopsy, but were not. By the way, do you know what your HER2 numbers were (eg FISH ratio or?)
The other Sarah
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Dear Sarahnh, sorry for a late answer: I always forget you guys are earlier stages:/ Then yes, usually standard protocols... and that is 6 cycles of TCHP. I think you will be offered surgery with axillary lymph node dissection and adjuvant T-DM1 next for 1 year? You know... when Dr. Sara Tolaney is your MO you are in best hands in this, and she will do everything right.
Saulius
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"It is an interesting read. It is about different variants of HER2 protein and their sensitivity to chemo." Thank you from me, too. I didn't bother to read it. Might send it to a niece, though, for translation. She is involved in research for Mayo.
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Sarahnh,
Mary (mcbaker) above is right--statistically we are about 4% of breast cancers so there just aren't many of us compared to the other subtypes. I only had the IHC test, so I wouldn't know my FISH ratio--but my score was 3+ with "greater than 90% of tumor cells with uniform intense complete membrane staining." So while I didn't have 100% of cells having the HER2 receptor protein as you did, my doctor at MD Anderson characterized it as high.
I had an MRI done right before my last chemo and it showed residual tumor. My bilateral mastectomies were done a little more than a month after my last chemo. I went into surgery still feeling the tumor and was certain I would need Kadcyla, however, the final pathology showed no live tumor cells but did describe a "tumor bed"--maybe that's what I was feeling?
Even with the complete response and the BMX, MD Anderson suggested I do radiation because my first MRI showed the tumor to be much larger than previously thought, even getting into the nipple. I also did a year of Nerlynx.
Wishing both Sarahs currently in treatment only the best!
~Beesy
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Here is the information on mine:
HER2 by Immunohistochemistry (IHC) Positive (Score 3+)
Percent of cells with uniform intense complete
membrane staining: 71% Gotta change the in my signature.0 -
Thanks Saulius, Mary, and Beesy! I feel pretty alone in this, so it's nice to have your input
Saulius - Yes I will have surgery, and they will do a SLNB (sentinel node biopsy). If the SLNB is positive then they will do an ALND. But for the record, I'm not convinced that ALND has any real survival benefit. I like and trust Dr Tolaney, she was recommended to me by two people, and I would recommend her to any HER2 positive patient.
Mary - Thanks for sharing your HER2 numbers!
Beesy - Thanks for the kind wishes, and inspiring story! It must have felt fantastic to learn that you had PCR, after the MRI suggested residual cancer! I will hold out hope for a similar miracle -- the latest MRI and a "mag view" mammogram still both show about 2 cm of cancer, but neither my doctors nor I can actually feel the tumor anymore. Do you remember how much residual cancer your MRI showed?
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Dear Sarahnh, dr. Tolaney is one of the leading BC researchers in the world, so you are really lucky you have met her. Now let's come back to SLNB vs ALND: you are right, clinical trials show there's no survival benefit in removing axillary nodes if SLNB is negative. This is a pretty novel method and IHC is not super reliable to detect micro-metastases, micro cell-agglomerations, and knowing how aggressive her2 is, and knowing you have residual tumor, I'd still go for ALND. But, sure, that is just me. You are stage IIIA (acc. to initial imaging and size of tumor), so you have good chances for a cure and everything must be done to achieve that. Hugs,
Saulius
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Sarah, I looked it up when this came up and it was close to a centimeter of residual tumor, but I still had one chemo to go. I'm not trying to give you false hope, but what I do know is imaging isn't a perfect tool.
I really enjoyed reading this book while in treatment, about Dennis Slamon's work on Herceptin: Making of Herceptin. Prior to that time, those who were HER2+ had some of the worst outcomes--and times have really changed. I agree with Saulius: "you have good chances for a cure and everything must be done to achieve that."
Please report back after your surgery.
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Hi Beesy - I had surgery and my pathology came back PCR. So my post-chemo MRI which showed extensive residual disease was100% wrong.
I am happy about the PCR, and maybe your post was a good luck charm for me!
But so so unhappy that the surgeon trusted the MRI, and therefore removed about a quarter of my breast (and possibly more lymph nodes than necessary), instead of what I understood would be just a centimeter or two if I'd had radiologic CR. The MRI was a disaster. I think the techs placed me incorrectly - resting on my rib cage so I moved with each breath, totally different from my previous breast MRIs. I moved with each breath, and it compromised the images. I asked them to reposition me right away, and then during the MRI, but they refused. It did seem like they just wanted to hurry up so they could go home early. Who knows if it would have made a difference. Maybe the lesson is to stand up for myself, instead of trying to hold my breath for 3 minute MRI sequences...
I could see that my surgeon and oncologists were surprised by the supposed cancer on the MRI. Wouldn't it be great if, when doctors' clinical judgment is discordant with imaging, it would trigger some sort of re-do? Because, as in my case, it may be that the doctors' judgment is right, and the imaging is wrong!
This was a good hospital and surgeon, MGH and Specht, so I don't think it's a matter of inexperience or sub-par medical professionals.
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Diagnosis: Mixed IDC and ILC (with DCIS and LCIS). Right breast (5 cm before chemo). Right axillary lymph nodes (several up to 1 cm before chemo).
Biopsy Pathology: ER negative (0%), PR negative (0%), HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
Treatment so far: TCHP (Taxotere, Carboplatin, Phesgo) 6 cycles, Dana Farber Cancer Institute. Lumpectomy (2.5 cm plus margins) and targeted SLNB (4 nodes removed included previously biopsied clipped node, isosulfan blue dye, sulfur technetium colloid radiotracer), Massachusetts General Hospital
Surgical Pathology: PCR for invasive carcinoma, residual DCIS and LCIS.
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Sarahnh, congratulations on your pcr!
My tumor was mixed IDC/DCIS and a tumor bed was left after TCHP chemo that was 8mm. The original size was 1.9mm. Within that 8mm there was DCIS present, however even with the leftover DCIS it still meant the tumor itself responded completely. Did you check your path report? Perhaps the leftover was just the bed with some DCIS mixed in. Dr. Tolaney is really one of the best of the best. I think you are quite fortunate to be getting treatment from her.
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Thanks alwaysmec!
Yes, exactly, my pathology report said there was DCIS and LCIS. And a fibroadenoma, and a bunch other stuff. It didn't use the actual term "tumor bed", but said "fibrosis consistent with treatment effect" -- could those be the same thing?
It looked like residual invasive cancer (not DCIS or LCIS, not fibrosis) on the MRI. But none of the Drs could explain why. I know the official MRI "false positive" rate is low after neoadjuvant chemo. But I wonder if it happens more often than we think!
Did your tumor bed and DCIS look suspicious on MRI, like mine did?
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Diagnosis: Mixed IDC and ILC (with DCIS and LCIS). Right breast (5 cm before chemo). Right axillary lymph nodes (several up to 1 cm before chemo).
Biopsy Pathology: ER negative (0%), PR negative (0%), HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
Treatment so far: TCHP (Taxotere, Carboplatin, Phesgo) 6 cycles, Dana Farber Cancer Institute. Lumpectomy (2.5 cm plus margins) and targeted SLNB (4 nodes removed included previously biopsied clipped node, isosulfan blue dye, sulfur technetium colloid radiotracer), Massachusetts General Hospital
Surgical Pathology: PCR for invasive carcinoma, residual DCIS and LCIS.0 -
It's nice seeing the familiar names and stories. I was diagnosed in December of 2017. I completed all cancer treatment in January of 2019. I'm doing great. There are a few residual effects from the chemotherapy. I developed minimal peripheral neuropathy in my toes of both feet between 4th and 5th chemo treatments. Unfortunately it has progressed but extremely slow. It doesn't impede function at all. It's been four and a half years since treatments and life is good. When I first read up on her2+positive I was devastated. This forum with knowledgeable women offering sage advice and excellent referral sources became my lifeline. I have an excellent MO who has co-authored several articles on HER2+ research. Even 4 1/2 years out there are moments when I experience an intense sharp pain in my affected right chest and a horrible thought will run through my mind, " oh no please don't let it be cancer again". I remain hyper diligent regarding any changes in my body now. Good luck to all of you. Thanks again for the continued support.
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sarahnh,
I haven't signed in lately--congratulations on the pCR! Regarding the MRI issue, I think they give us a picture of what's going on, but not necessarily an extremely accurate picture, sadly.
I understand why you are disappointed in the size of the excision, but if they found LCIS and DCIS in the tissue removed, wouldn't that have needed to be removed in one surgery or another? With the larger excision, will you avoid radiation?
Hello jo6359! Glad to see you doing well!
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Sarahnh congrats on your pcr. It's a constant learning curve. It's fantastic you have a doctor who is so well known and respected in the field.
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Beesy the other one nice seeing a familiar name. Knowledge is power. When I read these posts I think about how important it is for each of us to remain informed about treatment options. I recall when I first received my biopsy. I didn't understand any of those numbers and categories. It was on these discussion forums where I actually learned how to interpret and decipher the results of my biopsies, tests, labs, MRIs and all the other crap that comes along with diagnosis, treatments and aftercare. The process still sucks.
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Thanks beesy_the_other_one and jo6359 !
Beesy you are right - the DCIS would need to be removed anyway. My understanding is, LCIS does not need to be removed (it is not considered cancer, just a high risk marker).
The published risks for MRI falsely seeing residual cancer (ie failing to detect pCR) are *tiny*. But given both our experiences, I wonder whether it actually happens a lot more in regular unscrutinized everyday cancer treatment.
I cannot avoid whole breast radiation even with a "half mastectomy" unfortunately. It is just too far out of the standard of care. But -- given the unexpected pCR, I am trying to see whether I can avoid nodal irradiation if I stick with the lumpectomy, or avoid all radiation if I have a mastectomy.
There is a randomized trial looking at de-escalating radiotherapy accordingly, called NSABP B51. But it is closed to enrollment and won't begin reporting results for a while. I'd like my doctors to consider treating me accordingly anyway. But they seem to hate diverging from maximal "standard of care", unless the patient is formally enrolled in a clinical trial.
- Diagnosis:
- Mixed IDC and ILC (with DCIS and LCIS).
- Right breast (5 cm before chemo).
- Right axillary lymph nodes (1 biopsied, several "enlarged" on both sidesbefore chemo).
- Biopsy Pathology:
- Breast: ER negative (0%), PR negative (0%), HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
- Axillary lymph node: Metastatic adenocarcinoma.
- Treatment so far:
- TCHP (Taxotere, Carboplatin, Phesgo, with Neulasta Onpro) 6 cycles, Dana Farber Cancer Institute.
- Lumpectomy (5 cm) and targeted SLNB (7 nodes removed included previously biopsied clipped node, isosulfan blue dye, sulfur technetium colloid radiotracer), Massachusetts General Hospital
- Surgical Pathology:
- PCR for invasive carcinoma in nodes and breaset
- Residual DCIS and LCIS.
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My right breast (hereafter named Righty) was subjected to a biopsy when I was eighteen. I nursed two children for a total of five years. Righty was subjected to a needle biopsy ten years ago, again, Righty. Then three years ago Righty was diagnosed with DCIS. I made the decision at that time to have a mastectomy. By the time surgery was scheduled, Righty was full of DCIS. Lefty never had any problems and had faithfully served as God had intended. She did not deserve being cut off and thrown away. Righty was cut off, and my reaction was good riddance. I argued later with the plastic surgeon about a minor tweaking of Lefty so that she would look like ersatz Righty. He reassured me that theoretically Lefty would still be able to produce milk, but with a smile stated that he had never heard that question before.
My points are: 1 Everyone is different 2 If you want to avoid radiation, why not? 3 Amputation of a consistently misbehaving breast sometimes comes with minimal psychological distress.
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Sarah, I had to do radiation even with the BMX and pCR because the tumor had gotten into the nipple. It was the treatment I most wanted to avoid, but it was not to be. Radiation has improved greatly since my mother had it in 1994 and while it does have some lasting side effects, I found it to be one of the easier parts of my treatment, if it's any encouragement to you.
Jo--If I'm not mistaken, I remember making the assumption that 6/3 was your birthday when it in fact is not! 😂
Mary, I understand your feelings about amputation of a misbehaving breast or breasts. In 1997, I had a half mastectomy on the R side for a Cystosarcoma Phyllodes. When the IDC showed up on the L side, I was over it. I told the surgeon who had done the first surgery all those years before that I wanted them both off--two strikes and you're out--I had zero confidence that if I left any breast tissue I wouldn't be back in another few years.
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So true. Beesy. Some doctors (primarily male?) seem to think that it is always a traumatic event. I did lose my nipple for Righty. It was too close for safe margins.
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Hello, fellow rare subtypes!
I had my 6-month oncology checkup last week and it occurred to me that I should check in here. I hope you're all doing well.
I hit the 2-year mark in two months, and my oncologist said that with our specific subtype (and probably with my staging, but I did not ask), that if I can make it to two years without a recurrence that it is very unlikely that I will have one. If I can make it to five years, it's almost a certainty, but I was not aware of this 2-year milestone until last week.
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I had heard 3 years for the ER/PR neg, HER2 pos group — but either way it’s better than 5. I was also between stage 2a and 2B (depending on whether they count thelymph node) so that also might be a factor as you mentioned.
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I'm not worried. At the completion of Herceptin, the chances of re-occurrence was off the charts for me. That does not eliminate the possibility of something new in lefty. And that is still around 20%. Amazing how common BC is.
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