TRIPLE POSITIVE GROUP

kaydee - I am so sorry that this is such muddied water for you - one thing to potentially consider is that since your IHC testing showed as equivocal and not zero, you could possibly benefit from Herceptin.  I participate in a Her2+ clinical trial and one of the arms included those who express Her2+ at a level more than zero, but less than what is required for Herceptin to administered.  There is also a move to offer Herceptin to those who express amplification on IHC testing at a level of 2 or more, which previously would have been declared equivocal.  Both of these examples show that there is thought that Herceptin may potentially benefit those who had previously been declared Her2- by testing standards.  Because this spot is associated with your liver, rather than breast or axillary nodes, Perjeta is on the table as a possible option as long as your MO can support the Her2+ aspect of diagnosis to insurance.  The question I would imagine is whether to subject you to chemo again, or is there benefit to be had from targeted therapies on their own for you in this unusual situation.  I am unfamiliar with Foundation One - have never seen it referenced on BCO, I am curious how you knew about it and thought to pursue having a sample sent. 

colleen - IHC results for Her2 testing are usually expressed as a score from 0-3+, IHC scores for hormonal receptor testing are expressed in percentages.  Is it possible you are looking at the hormonal receptors testing percentage?  A score of 20% would mean that under the microscope when looking at 100 of your breast cells, 20 out of those 100 had hormonal receptors - thus 20%.  Here is info on IHC testing for Her2 and receptors:

Her2

"The IHC test gives a score of 0 to 3+ that measures the amount of HER2 receptor protein on the surface of cells in a breast cancer tissue sample. If the score is 0 to 1+, it’s called “HER2 negative.” If the score is 2+, it's called "borderline." A score of 3+ is called “HER2 positive.”

Hormonal Receptors

"A percentage that tells you how many cells out of 100 stain positive for hormone receptors. You will see a number between 0% (none have receptors) and 100% (all have receptors)."

pbrain - thanks for posting that!  I wonder why they put the percentage and not the usual 0-3+ scoring on Colleen's report.

Thank you SpecialK and PBrain, you are very resouceful. the first time I know about I am triple positive, I was scared and shaking uncontrollablly. I am lucky to find this group, people help each other and share their experience here. I decide to face my own journey, may God bless everyone!

Hello, hope everyone is doing well. Did any of you ladies who got lumpectomy and rads see a difference in breast size? I'm starting rads next week and my RO told me that he would prefer I get the standard course instead of the short course as one of the chemo drugs I got (I got tchp) makes the breast tissue sensitive and the cosmetic outcome of that and short course radiation has not really been studied. I did not ask him at the time and wondering now as usual did you all hear about this too?

windgirl - I had lumpectomy and 24 full breast rads followed by 12 boosts.  I have implants from years ago and the radonco warned me that the implant may rise higher in the breast over a period of years.  It's only been a few months but so far, I've seen no change.  I was told to massage the implant downwards several times a day but can't seem to remember to do it.

Windgirl, my lumpectomy breast definitely shrank after radiation. it's not obvious with clothes on, but noticeably smaller without.

Kaydeesmiles, I'm so sorry you had a recurrence. I remember you from the cold cap thread. I hope the recurrence is HER2+ so you can take advantage of all the new treatments out there for HER2+.

Tee hee Kaydee, essentially I like the Genentech drugs because I'm a doctor who works for Roche and we own them . But also, mainly, I understand their mode of action and in my opinion the three drugs available wage serious war on the Her2+ cells in the body and leave the rest of our cells pretty much alone. The military strategy designed to kill the cells is sophisticated beyond the imagination. So keep pushing your MO. Kadcyla and Perjeta are relatively new, and there are a ton of trials going on. Have you been to www.clinicaltrials.gov ? Type in Her2+ and see what is enrolling. I've told others before, don't worry if the trial says it is based out of East Jabip. There might be a site in the trial enrolling near you. Also realize that the staining done on your cells is through what is called frozen section. The pathologist only sees a cross-section of your tumor, so Her2 can be seen in some regions and not others. Tumors are as mixed up as we are.

Special, I'm not sure why the pathologist reported out the percentage of cells expressing the receptor, but I do know that is how the "plus" system is read. It isn't standard to tell patients that, and my suspicion is because 20% might not sound like much (as opposed to hormone receptor positivity, I don't remember, but I think I was 99% ER positive), so patients might not take it seriously? I don't know, good question.

Yeap, Windgirl, I have a little bit of a dent in my left breast. My BS said she felt she could really remove tissue even though my tumor was small because my breasts are/were biggish. I had wonderful margins on pathology, so I don't care. I've since lost about 24 lbs and so I can see the indentation sometimes. (I'm so lucky to lose weight on my boobs and not my tummy...) My RO just gave me the regular course of 36 rads, 5 of them being boosts. There was no discussion on a shorter course, but this was about a year and a half ish ago.

Welcome to the newbies!

I wish I was getting smarter but its just not in my makeup.. When they talk like that, it sounds like Charlie Brown's parents to me. I just like to bask in the glow of good company and know that I can come here for good advice and understanding.

CoastalXPat it is not unusual for the biopsy to be off. It's only a small sample. Tumors are not always homogeneous. BTW I have read that FISH tests are the most accurate. I only had FISH test. Tested positive in both biopsy and surgery. Also PR- is not unusual for us HER2+ gals. I'm only 5% PR+. There are many PR- on this thread. We essentially are treated the same and considered in the same group.

LakesideWLabs no need to translate. I'm originally from Boston area. My parents live down "The Cape"

SpecialK thank you for the links. i'll check them out.

pbrain - ya, i started trolling clinicaltrials.gov right after i finished radiation. i was thiiiiiissssss close to getting into the neuvax trial but after the initial blood test was told i didn't have a particular mutation they were looking for. thank you for the information. i think i may have convinced my mo to add herceptin to the xeloda. now on to the insurance company. we'll see. turns out i have an erbb2 mutation and it's possible i may benefit from several of the drugs that target her2.

Coastal - i can't tell you how much appreciate you sharing your experience. Helps me feel like I not such an anomaly you know?

PatinMN - I remember you too! How are you? I hope you are well and kicking this awful thing straight to the curb.

Kay

I had a 1.6 cm triple positive tumor that seems to have melted away since Sept. It is time for surgery. I am leaning towards lumpectomy. Any thoughts? What about recurrences?

Tree has it melted away due to chemo pre surgery? I did TCHP 6 cycles and when they did my BMx all the cancer was gone. As to what you do, it is truly a personal choice. Mx and BMx with recon are a LOT longer recovery time.

Tree, I'm sure it varies from person to person due to lots of factors. For me, despite the cancer going away completely after chemo, I had an MX (which is how we truly knew the cancer was gone) and will have rads. Talk to your MO and team and find out what they recommend based on your situation.

CassieCat - why rads with an Mx? Was some in the nodes? Was the original tumor big????

Linda - wow - Genetech told me they wouldn't go backwards and that since I was only paying a co-pay and that my MOs office billed with the doctors visit first, they wouldn't be able to pick up anything. Same thing with the 'co-pay' for the neulasta shot during chemo. Wonder what the secret is. Those co-pays added up. Herceptin 17 x 60 = 1020 and Neulasta 6 x 60 = 360; I'd love to find a way to get that 1360... I could use it to pay my other bills that I'm currently on payment plans for. I hate being in debt. Cancer Sucks!