What Would You Do?

bluepearl · January 2017

Even small breast tumours that are Her2+ can be sneaky and it is best you go through the chemo and herceptin. Do get a second opinion though. Glad to see the Ki67 went down too.

BermudaRainbow · January 2017

Lisey thank you for this! I'm writing this down in my book of questions to ask during my 2nd opinion

Meow13 · January 2017

I really think it would be beneficial to get an outside lab to evaluate the her2, like suggested above blueprint. Sorry you have to travel 4 hours, that is a drag.

I hope you get a better response from your second opinion. I have been dealing with this physican assistant in my Mom's care that is on a mission to twist my arm in treatment. When you loose confidence it is almost impossible to get it back. I have talked my Mom into getting all her medications reevaluated. Thank God she is feeling better. She doesn't have cancer but it was thought she had congestive heart disease. Well a cardiologist has found that not to be true. When he took her off the diuretic medication she started to get better.

When medical people get touchy about 2nd opinions red flags should be raised. I don't like confrontatiin but sometimes you have to.

Good luck next week.

momand2kids · January 2017

Bermuda

Listen to your own instincts. If you don't feel that you are getting what you need, say so to them. Breast cancer is an industry like any other, and I think because people inside it deal with it day to day, they have developed a shorthand--" oh, you have xx, so we do yy" and in general, that is a good thing. But sometimes, there are cases that require more investigation or more answers or patients who need more guidance. A request for a second opinion should be welcomed and if it is not , you may have to find other doctors. I think the relationship that is most critical will be with the medical oncologist--that is who you see for the next many years-so he/she and her staff need to be people that you trust and can raise questions with. I am almost 9 years out and I still arrive at my oncologist's office each year with a list of questions-which she and/or her staff happily answer. I think that is what you want. You need to be totally comfortable with how you are going forward because it is all about your life and your cancer. Hang in there-- this will get easier once you have full faith in your team.

BermudaRainbow · January 2017

momand2kids, they are welcoming and supportive of my second opinion. I guess for me the fact that they said there are no additional tests, the fact that they arent explaining what "weak positive" means, the fact that my nurse said all the readings are subject to human opinion, the fact that no one has explained how my ki67 went from 90 to 30, and the fact that I feel they don't know anything about me or my lifestyle bothers me. The facility is so large and it's like an assembly line. It could be that I'm overly sensitive because of this. I felt great about my breast surgeon until I met with him and was told no chemo but 3 days later met with oncologist who said chemo was recommended and my bs never said anything about equivocal results. I also feel great about my plastic surgeon. God will guide me in the right directions and be wit her me through whatever the outcome.

Italychick · January 2017

Bermuda, what size was the tumor? I don't recall seeing the size anywhere. That might also factor into the decision making process.

SpecialK · January 2017

Italy - the OP said 1cm in the header

Italychick · January 2017

oops, sorry, my bad. I was 1.3 cm, and honestly, I'm glad I was able to get Herceptin. I've read so much about how powerful it can be that I opted in to do it. But I was headed for chemo anyways.

KBeee · January 2017

Ki67 is very subjective and is not reported by some labs for that reason.

If they sampled different parts of the tumor, there can be variations within the tumor

There are 2 ways to calculate HER2; the other tests which include them typically use FISH, which is most sensitive, but it sounds like you've had that done.

It is frustrating when BS says one thing and MO disagrees. BS's expertise is surgery. MO's expertise is hormonal therapy, chemo, etc. Hopefully you will get helpful information from a second opinion which will help you make the best decision for you

BermudaRainbow · January 2017

yes going to memorial sloan Kettering to meet with a MO. Does anyone have any experience with this hospital

momand2kids · January 2017

Bermuda,

it has already been said, but bears repeating. Surgeons focus on surgery-- and sometimes they have an opinion of what they think should happen next. I loved my surgeon- and she thought radiation was going to be enough. She was wrong- because we did not have the oncotype results. But, from her experience, my case looked like radiation only. It was frustrating a little, but I now see that she was basing it on her experience, as was my MO. And in many cases, given their experience, they are right. But there are so many tests that give them and us good data to make even more specific decisions about our cases.

It can feel like an assembly line. I have to say, that was somewhat comforting to me, knowing that so many other people were going through the process-- sometimes a little of the humanity does get lost. I sometimes had to remind people that each case was different- and usually they understood. I think when they are dealing with so many people all day long, it can be hard to focus on how each person is feeling (I say this as someone who works with people in crisis all day long so I do understand it a little). As patients, we have to remind them that we are there, we are individuals, etc. I think you have to like the MO most- since that is the person you will see the most. I don't see mine much any more-I see her NP-who I also liked-and I am ok with that. MSK is a great place by all accounts.

My experience of the breast cancer industry, on the whole, was that they really had it together, were doing good research, were treating patients well-- but I am sure there are moments when patients feel like a number. Self-advocacy is so critical in those moments- or working with the navigator or a partner to be heard. I wish you the best of luck!

BarredOwl · January 2017

BermudaRainbow:

In a more specialized case like yours, a second opinion can be very helpful.

Re: "The Blueprint test will give you a definitive [answer] on whether you are HER2 or not."

Please do not hesitate to inquire about the BluePrint test; however, it seems unlikely that BluePrint would be recommended to anyone in connection with the determination of "HER2 status."

This is because "BluePrint" is not a suitable test for determining or confirming "HER2 status."

BluePrint is a molecular subtyping test for certain breast cancer "subtypes": "Luminal-type", "Basal-type", or "HER2-type". The results of the MammaPrint test (High Risk or Low Risk) are used to further sub-stratify "Luminal-type" tumors into Luminal-type (A) (if MammaPrint "Low Risk") or Luminal-type (B) (if MammaPrint "High Risk").

(1) "HER2-positive status" and BluePrint "HER2-type" subtype are different things:

Overall, BluePrint relies on 80 different genes for determining molecular subtype. Per Krijgsman (2010), "HER2-type" subtype" (based on a "HER2-type centroid profile") as determined by BluePrint is a "gene expression profile" based on the mRNA levels from four genes.

Krijgsman (2010): "A diagnostic gene proﬁle for molecular subtyping of breast cancer associated with treatment response"

ResearchGate free PDF: https://www.researchgate.net/publication/51545570_A_diagnostic_gene_profile_for_molecular_subtyping_of_breat_cancer_associated_with_treatment_response

(x-out the dialog box and scroll down to pdf)

In contrast, "HER2-positive status" as assessed by standard pathology methods is based on gene (DNA) amplification of a single gene ERBB2 (also known as HER2/neu) (e.g., by FISH) or overexpression of HER2 protein from a single gene (by IHC).)

(2) "HER2 status" does not correlate with BluePrint subtype:

This 2014 study reports IHC and FISH-determined statuses versus BluePrint subtype:

Whitworth (2014): "Chemosensitivity Predicted by BluePrint 80-Gene Functional Subtype and MammaPrint in the Prospective Neoadjuvant Breast Registry Symphony Trial (NBRST)"

http://link.springer.com/article/10.1245%2Fs10434-014-3908-y

A free PDF is available for downloading.

Regarding standard pathological assessments:

"Hormone receptor (HR) status (ER and PR) and HER2 status were determined locally on pretreatment core biopsies [as this study was in the neoadjuvant setting]. Both ER and PR status were determined by IHC and were considered positive if there was [greater than or equal to] 1 % positive staining. HER2 status was determined by IHC and/or FISH assays locally. HER2 status was regarded as positive if there was 3+ staining and/or FISH positivity."

As you can see from the table, HER2-positive status does not result in "HER2-type" subtype, but may be categorized by BluePrint as Luminal-type or Basal-type. Similarly, HER2-negative status does not preclude classification as HER2-type subtype.

Treatment decisions regarding the use of HER2-targeted agents focus on "HER2 status," and do not rely on "HER2-type" subtype. This is not surprising, since many HER2-positive tumors are not classified by BluePrint as "HER2-type" subtype, and reliance on subtype would lead to under-treatment in those cases.

Please arrange for a full pathology review as part of your second opinion, and arrange for actual pathology slides and all related written reports to be forwarded to enable a review of the HER2 testing performed to date to the extent possible. The pathologist and medical oncologist should provide their expert views regarding the quality of the tests to date, what they indicate about your HER2 status, whether any further testing is recommended or not, and if so, by what type of test(s), and what the HER2 status of the tumor means regarding the potential benefit of a trastuzumab-based regimen.

Best,

BarredOwl

BermudaRainbow · January 2017

I'm so happy I went to MSK yesterday! Dr. Gilewski was amazing and gave me valuable info, was humanistic and caring without trying to sugar coat things. She gave me a thorough exam, which my oncologist didn't even touch me at Hopkins, just came in after having the NP give me a quick once over, and told me my chemo options. The NP at Hopkins had a terrible bedside manner. My BS and PS are good, thank goodness. Well, the outcome is that MSK isn't convinced I am HER + and has requested the FISH from my original biopsy and also shared that the HER2 guidelines were recently lowered (by the original author who is at Hopkins and she stated may be a good person to contact and obtain his thoughts) and wasn't comfortable stating that I am positive, so will also be retesting the block they've received from Hopkins. If i am positive inthe end I will figure out a way to travel to NYC for treatment, but she also feels a mild form of chemo like CMF would be better for me. She remarked that it was refreshing that i was knowledeable and had good questions. My original biopsy showed FISH was equivocal - 1.4%, that's a good thing.

KathyL624 · January 2017

Bermuda, I go to Sloane and am very happy with my care. Who are you seeing there

BermudaRainbow · January 2017

KathyL624,

Dr. Gilewski and I felt so much safer there

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