Triple negative or not?

bak94

 I have had a great response on ac! 90%reduction on internal mammary nodes and can't see activity in the breast (according to pet/ct that I had today, not the best for viewing breast, but ct good for the nodes).

My next step was to do abraxane/carbo, but mo is changing his mind on the carbo. He now want me to do abraxane/avastin plus zometa. He then went on to say that he may put me on hormonal therapy and herceptin! I thought I was triple neg! I guess I have 3%er positive, 0%pr and her2 +1. He said doctors are now starting to treat her2 +1 gals with herceptin! Have any of you heard this? I am in shock to think I will be on hormonal therapy plus herceptin. My first breast cancer 8 years age was triple neg, but now my doc is having the tumor retested with todays methods to see if that still hold up. I am so confused!

Anyone experience this? I can't find any research on herceptin for what is suppose to be a normal reading. My doc does seem to do things a bit differently, but I don't want treatment that won't help me! I have heard of the her2 vaccine trials that take patients that are slightly positive, but not for herceptin.

christina1961

Bak94,

I'm so pleased you got a great response to the chemo!  I wish I had some wisdom for you regarding herceptin but I don't know anything about treatment for Her2+. 

I had neo adjuvant chemo and they just tested the residual tumor and found it 5-10% positive for ER.  I have two appts soon with two different oncs so I will find out whether that qualifies me for hormonal treatment.  I saw one thread that said tamoxifen helped patients with even low estrogen positivity.

By the way, love your profile pic. Are those your babies? 

bak94

Sounds like we have similiar pathology. How was your response to neoadjuvent? I know sometimes the scans can show great results and then when surgery is done it is a different story, so I hope my scans are close to being correct!

Those are 2 of my babies, I have 4 dogs, 2 cats, 5 goats, 16 chickens, 2 parrots and 3 cockatiels. That cat and dog love each other and I always find them spooning each other!

Your kitty looks so sweet!

Suze35

Hi bak - I was 3% ER+ on my biopsy, but the surgical pathology from my tumor showed 0%.  She sent it out for an Oncotype just to make very sure, as that will detect if there are any hormone receptors.  My doctor said that the initial test is subjective to the person reading the slide, which could account for the discrepancy.  I also needed the FISH for my HER because it was borderline with my biopsy, but again, final pathology was clearly negative.

I would talk wtih your doctors about these possibilities, but know that it might change after surgery.  My doctor was willing to put me on Tamoxifan for 3% ER, even though the benefit is small.  As for Herceptin, I would really do some research on that - it is a miracle drug, no doubt, but can lead to heart issues down the road.  I HAVE heard of trials that are attempting to make HER- cancers respond to Herceptin...

When is your surgery?  Mine wasn't nearly as bad as I expected, well, except for the nausea from pain meds that made me vomit every time they touched me.  When I finally told them to lay off the narcotics, I felt much better.

christina1961

The kitty in the photo was one of our foster kitties who was adopted into a permanent home with her sister!  They were found together as small kittens in the downtown area, starving and sick.  You have a very interesting menagerie!! I love goats but I never had one - I've found that some I've met through the years have seemed to be very affectionate creatures.  My dream was always to have some acreage and have lots of animals.

I'm not sure yet how I responded to chemo exactly.  I had a 2 cm residual mass (from 2.5 cm) with two positive nodes.  I don't know if you've read about the "residual tumor burden" calculator that MD Anderson came up with but it analylizes the residual tumor burden based on the cellularity of the remaining tumor (percentage of cancer cells as I understand) and other factors.  The pathology report I received following my surgery didn't analyze the cellularity or even distinguish between the percentage of my remaining tumor that was DCIS and IDC- only reported that I had both. (DCIS does not respond to chemo.)  I did respond to the chemo in my nodes because they went from being palpable to non palpable.  I didn't have any scans during chemo, just physical exam although I had a regular CT scan from neck to hips prior to surgery that was clear.  I am getting a second opinion in a couple weeks with a different pathology department analyzing the residual, so maybe I'll have a better idea then.

Even though my CT was clear and I still had 2 positive nodes, I believe Pet scans must be better than regular CTs so hopefully your response will equal or exceed the scans!

bak94

Suze35, I thought you had said you were 3% er pos. at biopsy. Yes, my doc will be retesting when I have bmx. He has decided not to do carbo and I think he said because of the low er positivity, I should record him because sometimes he is all over the place! I think he is brilliant, but he does change his mind, I think he does that because he is constantly going over studies. Maybe he is saving carbo for after the surgery if my tumor turns up 0% er . I will be doing 6 weeks of weekly abraxane with 2 doses of avastin, and then will have a ct, if ct shows no response I will go in for surgery as soon as the avastin timing allows, if there is shrinkage  I will finish with 6 more weekly treatments of abraxane. My surgeon wanted my mo to do avastin after surgery because of the timing issues, that is why only 2 avastin treatments early on with the abraxane. Oh, and I will start zometa, which I am confused about. He said studies show it to prevent recurrence, but I have only seen ones that say that maybe it does not.

I do think our docs are very similiar, throwing everything at us. He keeps saying he is going for "the cure" with me. Both him and I are realistic about that, but I like him fighting for me like that. Didn't you say you had response to taxol to start and then it stopped working? I worry about that as I have had great response on ac, and my nodes can't be removed with surgery, but I will have radiation to the nodes. My doc is scan crazy. How many scans did you have during chemo and what kind of scans? I had a pet/ct before chemo, a ct at 6 weeks after chemo and then another pet/ct after finishing ac. (not sure I like having all the radiation and contrast stuff, but oh well).

Sorry this is so long, I should have pm'd you!

Suze35

I don't mind long posts - maybe it can help someone else too !

My MO did give me Carbo with us assuming the 3% ER, so I'm not sure why your doctor is hesitant.  It really depends on the doctor I am finding as to what they consider positive vs. not - my MO said under 5% is considered negative, but I'm hearing others say even 1% is positive.  There doesn't seem to be much consensus.  It is possible your doctor wants to hold on the Carbo to keep in his pocket so that if you have a good response, you won't need it. 

I did have a response to AC - 50% according to MRI, and an obvious clinical response to Taxol and Carbo.  By week 8, even the BS said it felt like a normal breast exam.  But I kept thinking my nodes were getting bigger, everyone kept saying it was scar tissue, and I didn't push for a PET or MRI.  So I would definitely stay on top of the scans.

I've had so many scans, lots of scares!  I had an initial PET and breast MRI, had a breast MRI after AC, had a PET after surgery, two brain MRIs after surgery, a neck MRI, and just recently an abdominal CT.  Thankfully MRI's aren't x-rays, or I'd be glowing!  I'll be getting another PET and brain MRI in October, once I've been on Xeloda/Avastin for 3 months.

I get my second Avastin on Monday.  The NCCN has just come out in strong support of keeping it standard of care, and many insurance companies follow that rather than the FDA in terms of paying.  I am hopeful that at the worst, the FDA will say "no new patients," but allow those of us on it who are responding to continue.  But who knows.  In my MO's view, ANY Avastin is better than none, so I'm glad to hear you will at least get two doses.  I know that it works best with the taxanes (and Abraxane is one of them).

I'm willing to give the Zometa a chance, even though I know there are some potential side effects.  I'm only getting it every 6 months.  My doctor told me the initial study showed it was beneficial, the second study didn't back it up, but she believes it is useful even if just for bone mets.  And I'll also start Metformin next week at a low dose and work up to a higher dose.

I feel like a pharmacy sometimes, but every chance I have, I want to take!  My MO and RO tell me I am still on a "curative path," so I'm doing what I can to help them out with diet and exercise.  I hate all the drugs I will be taking, but if I'm here in 10 years, well, I'll manage!

bak94

I like the "curative path"! We have to try, and the time is now to try!

christina1961

Suze,

You have been through so much and always amaze me with your positive spirit! My sister was on Avastin for six months - she was a Stage 3C with 10 pos nodes at diagnosis but strongly ER positive.  She is doing great almost five years later. 

Suze35

christina - thank you for your kind words and for that positive story!  I'm always looking for good outcomes regardless of ER status!  When I'm in a funk, I find the Stage IIIc survival thread on this forum, and read Godsgirl's story.  She is my inspiration .  We all do the best we can, right?