ER-, PR-, Her2+ Roll call

Welcome Ukkate. Sorry you have to be here, but you'll find some wonderful support threads. Your diagnosis sounds a lot like mine (and the size of your family - my kids were 22, 20, and 12 when I was diagnosed.) ER-PR- Her2+, two IDC (2.2 cm and .7 cm) and extensive DCIS. I had a unilateral mastectomy and 6 treatments of Taxol, Carboplatin, and Herceptin (for the rest of the year.) That was 5 years ago, and I'm still doing well! Hopefully, things will go just as well for you. 

Hi everyone, I'm new in this group, I had surgery mastectomy on 6 March & will see oncologist tomorrow afternoon to decide my treatment, one oncologist told me do standard treatment chemo (x6) & Herceptin ( x 18) ; however another oncologist said that chemo (x4) ONLY without Herceptin is enough for my case. ER-, PR-, Her2+ stage 1a tumor 20mm; 2 out of 3 lymph modes harbour isolated tumor cell, no extra capsular invasion.

I am confused! Any advice? Thank you!

Thank you for your reply! Actually I was advices chemo only, no Herceptin! Is it uncommon to do so?

Kakamama, If you are HER2+ and your doctor is recommending chemo, you should also get Herceptin! Current standard recommendation for Herceptin is tumor size 6mm or bigger. If your tumor is 20mm you are well within the guidelines, especially since you have tumor cells in two lymph nodes. I'd be interested to hear that oncologist's reason for not recommending Herceptin for you.

Abby20:  There is a vaccine trial that starts after the one year of herceptin.  I'll look up the details, but it's 6 months of vaccine  & then tapering off to something like every 6mos.  I have the link mixed in with everything I've tried to read in this one week crash course before chemo starts.

Just posted on another forum but wanted to ask my fellow ER/Pr neg Her 2 pos sisters: what kind of yearly follow up do you get? esp as to disgnostic vs screening mammograms? MRI's? ultrasounds? my full post is over on the "moving On" thread...wasn't sure where to post it..

Almost 10 years out here...

Add me to the ER-, PR-, HER 2+ group.  I start my TCH treatment this week.  This seems like a great place to connect.

Hi Michelle,



I see you are an RN. I am a nurse too. I don't post often, but thought I would say Hi! I wish this particular thread was more active, like the ER+, HER2+ thread. I am almost 2 years from diagnosis.

Hi pumpkins it seems that it not that common of a dx.  I seems like most are HER-.  Good for you on being 2 years out.  I don't know about you but for me it is hard to be "the patient"  I work in a hospital and now "go" to the hospital.  Anyways thanks for saying hi.

prvdk: looks like we will be going through all of this at the same time.  I start my TCH this thursday. Probably see you around on here.

Thx Maryanne sounds like great follow-up, you must have awesome insurance- am I interpreting that right? Can I ask about the Zometa? Why do you get that? is that a standard thing now? 

Can anyone else a few years out with our stats share their follow up routine? I am trying to understand what is standard of care for us, and if my HMO is cutting corners...wouldn't be surprised. I had to fight and jump through hoops to get MRI ordered. Now this year to my shock they only gave me a "screening" mammogram, rather than a diagnostic, and no ultrasound...

Trying to decide whether to switch out to a different provider but insurance options through my employer and money are very limited

Hey all,

            Good to find this thread with others who share my dx.  I have gained so much knowledge from these boards, following them each step of the way, each treatment.  I am toward the end of treatment, just doing herceptin now every 3 weeks.  Hope the thread stays active, we can learn so much from each other.

I was scanned head to toe after diagnosis. Nothing since. My Onc only scans when something is problematic. Bloodwork every 6 months. I have BC/BS. They were really slow to pay until I got on the phone with them. They would pay for some things and not others. I threatened the Insurance Commissioner & Office of Inspector General. After I talked with them they set up a file for me and I never had another problem.

I'm getting close to one year since my surgery and am still on Herceptin.  I'm supposed to go get a mammogram but I keep procrastinating.  My MO did make me go have an MRI and wants me to still get those yearly for a few years.  (I haven't heard any results yet which I'm hoping is a good sign.)  The reason she gave for the MRI was because the original DCIS (IDC wasn't seen at all) wasn't seen on mammo or ultrasound so she feels the MRI is the best way to go for a while at least.  I'm getting MUGA scans every 3 months but those should end when the Herceptin ends in July (I think).  I'm not sure if she's gonna order more CT or bone scans as routine or just if there is some cause for concern.  I did have a second CT scan about a month or so ago but that was because she was concerned about something in the first one last summer before the chemo.

I'm guessing that the follow-up is often based on the characteristics of the original case.  Things like whether or not there was a mastectomy or lumpectomy, whether it was a single or double, size of tumor, DCIS or DCI or other, whether there were nodes involved, what sort of treatments were done (chemo, rads, surgery, etc) probably influence how often followups are done and what types are used.

Minus two there is a fairly active board for those of us taking perjeta in the stage iv forum. Several of us are now ned. My met was er-pr-hr+.

What is perjeta? Is it new, I have not heard of that one?