Waiting is killing me...

SoozyCue

I have ILC ER/PR+. My biopsy came back HER2 equivocal. A second (FISH) test came back positive.

The surgeon is telling me not to even worry about it... that it has to be false. His only reasoning: ILC triple positive is rare. He tells me that it will be negative in surgery specimen and my only treatment will be AIs.

The oncologist says a false positive FISH test is much rarer than an ILC triple positive. He thinks I'm in for a full year of chemo and Herceptin.

Another surgeon says that even if it is positive, only one round of chemo up front, no hair loss, no blood issues, and only Herceptin for a year.

By the time I have surgery and pathology is back, it will be a month. I'm going crazy waiting for a month knowing what my next year will be like. I am also self employed and really need to tell clients if I'll only be off for a couple months or for a year or longer.

What is the usual treatment after BMX with triple positive? What is the possibility of a false positive HER2 (after an equivocal test)?

ElaineTherese

SoozyCue,

As far as I'm aware, no one gets a full year of chemo for triple positive breast cancer. I'm not sure what that oncologist is talking about. Yes, Herceptin for a year, but chemo????

Also, I am unaware of a chemo for triple positive that doesn't involve hair loss.

Most triple positive breast cancer patients with tumors bigger than 1 cm get either:

Four rounds of Adriamycin + Cytoxan; twelve rounds of Taxol + Herceptin (and sometimes Perjeta, another targeted therapy)

OR

Taxotere + Carboplatin + Herceptin (and sometimes Perjeta, another targeted therapy)

What chemo regimen you get may depend on whether or not you have pre-existing conditions or the preferences of your oncologist.

Good luck!

hapa

Treatment is going to depend on the outcome of your surgical pathology. I can't comment on the possibility of a false positive, but FISH is considered to be the gold standard for Her2 testing. However, I doubt you'll be off work for a year. I worked through chemo and even went to the gym, hiked, etc. the whole time, though my chemo was neoadjuvant so I didn't start off beat down from surgery. My last infusion was yesterday and I will be getting just Herceptin and probably Perjeta for another 36 weeks. Those will only last an hour and usually have few side effects. How long it will take you to get back to work will depend on what kind of work you do, whether you have any complications from surgery, and how bad your chemo side effects are. You may also have to have radiation, even with a mastectomy. Unfortunately, there are tons of unknowns right now.

Also, the surgeon who told you only one round of chemo up front and no hair loss...well I don't know where he or she is getting that information.

SoozyCue

I'm sure I am misunderstanding about the year of chemo because the chemo aspect is the aspect I understand the least. Perhaps it is more accurate to say that I was told I would need whatever a full round of chemo is plus 1 year of herceptin. The other surgeon very clearly said only one round up front and no hair loss or blood issues. I have that in writing.

I won't be able to work through chemo for two reasons. 1. I have a pre-existing condition that side effects from chemo are going to significantly worsen, so there's a good chance I will be overnight in the hospital very often after chemo. 2. My career is extremely deadline oriented. I could receive a call on Tuesday that someone needs to use something in court on Thursday, and if I'm unable to work on Wednesday, it's a huge deal. Since Murphy hates me to begin with, I'm not even going to take the risk of having to tell clients repeatedly that I can't make deadlines because my head is in the toilet.

So, is it possible to break it down for me in weeks or months since I really don't understand how chemo works in these situations?

And it sounds like in my shoes you would also anticipate the HER2+ to be accurate? The way my primary explained it to me is that it isn't a yes or no test. They are measuring antibodies, and the equivocal test was high in antibodies. High enough to be borderline positive. Then the FISH test showed them to be over the threshold considered positive. That is his logic for expecting the positive results to be accurate. In both tests, lots of antibodies. That seems a lot more logical to me than shrugging it off only because it is rare.

SoozyCue

I transcribed the text images sent to me. My primary wanted to send me to a breast surgeon for a second opinion, but was afraid it would delay my surgery. Simultaneously, and anesthesiologist friend offered to show all of my lab results to a breast surgeon who she works with all the time. It just happened that both my doctor and my anesthesiologist friend were talking about the same breast surgeon. So here is part of the convo that was sent to me in screenshot...

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

Anesthesiologist: She was told that if she is Her2+, she would need a year of chemo.

Breast Surgeon: That is true, but HER2 targeted treatment is one or two medications given every three weeks for a total of a year. She would get standard chemo up front and then only the targeted treatments for a year. No hair loss or blood issues.

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

So I'm still confused, because it sounds like she is saying, yes, she will need a year of chemo, but she won't... and also because everything I am reading says that herceptin is given once a week for 52 weeks.

I really do understand that none of this can be known until the pathology on the surgery specimen. I would just like to mentally prepare myself, and right now it feels like the responses I am getting from everyone are all over the place. I would love to ask my surgeon tomorrow, but since my surgeon is so positive that my HER2 isn't positive, he will not answer all of the questions I have about treatment for it if it is.

ElaineTherese

Hi!

Oncologists are the specialists who oversee chemo, not anesthesiologists or breast surgeons. They are not experts about chemo!!!! I don't know whether your tests have been accurate or not, but I do know that you can keep asking for more opinions just to make sure that your are HER2+

Timewise, this is the way it worked for me:

I did 4 rounds of Adriamycin + Cytoxan every two weeks.

Then, I did 12 rounds of weekly Taxol + Herceptin + Perjeta (every three weeks).

That meant about five months of chemo, from late July until mid-December, 2014

Then, I did surgery in January of 2015, and I began my Herceptin only in February of 2015. I did it every three weeks until December 2015.

I did radiation for six weeks during Herceptin only beginning in March of 2015.

I worked through chemo. I'm a college professor, and I do have deadlines, like mid-term grade reports and grading timelines. I never had my head in a toilet because chemo never made me barf. Now, the THP combo did give me diarrhea on Fridays, but I now know the locations of every bathroom in every grocery store in town.

Hope this helps!

SoozyCue

Thank you. That's very helpful. You described what it sounds like the oncologist was trying to describe in loser terms. It sounds like he's the one I should be listening to.

It's my lifelong issues that will make chemo very tough on me. I'm already hospitalized for a week at a time when something triggers my digestive tract. Example: once I finished half an apple that a child was going to waste and I was in the hospital for a week with an NG tube draining it from my stomach.

The deadline factor... I didn't mean so much deadlines, but very quick turnarounds. Like the example I gave where I could conceivably have to spend 12-14 hours on a project on Wednesday. Can't start Tuesday because none of the raw materials arrive until after midnight. Has to be in court in front of the judge at 9am Thursday. You don't take any chances of not being able to deliver when a 6 or 7 digit lawsuit is on the line. There are no extensions. You just don't take the project to begin with. Most of my work is literally on call, I never know when, and I can't drop a beat.

SoozyCue

I had my final appointment with my breast surgeon before surgery, and I think he is coming around to accepting that the HER2 could be positive. Before yesterday, he was really blowing it off, and not discussing what treatment would be because he was so sure it is a false positive. Yesterday, however, he decided to send me to an oncologist before surgery, which he said before wasn't necessary, and he spent a lot of time explaining what the chemo would be like, telling me I would have a port, and that kind of thing. I don't know if it is because I made it clear how concerned I am about this or because something made him realize that his anticipation of my results being inaccurate wasn't very realistic.

WC3

I don't know how ILC differs from IDC in terms of treatment, if at all, but I have triple positive IDC and am doing 6 rounds, one every three weeks. of neoadjuvant TCHP, which is taxotere (or sometimes they use taxol) and carboplatin chemotherapy with herceptin and perjeta targeted therapy. Then sugery, maybe radiation depending on which surgery I go with, and then a year of just the targeted therapy and hormone therapy until I guess until they are confident my ovaries won't wake up.

At the moment I don't think the targeted therapy is giving me more than a runny nose.

I haven't been able to work while on chemotherapy but part of that has to do with my transportation and the nature of my job. If I drove to work and had a desk job that allowed me to use the restroom whenever and as frequently as needed I might be able to work part time but I have to walk 2 miles to work or take a germ infested bus and I don't have a desk job or unhindered access to a restroom at work and can't be temporarily assigned to a responsibility that would allow such.

Gudrun

Dear SoozyCue,

it's rare but not that unusual to be TP with ILC. I've seen quite a few here on these boards.

SoozyCue

Thank you all so much for your responses. They definitely help me get some sense of what I might be in for.

I'm supposed to learn my surgery date later today, so then I start counting down the days before pathology comes back and I (maybe) make some decisions.