ER-, PR-, Her2+ Roll call
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Hi. I'm at the beginning of this. HER2+ with two IDC and one IDIS in the same left breast. Having mastectomy on April 10 with node biopsy and then will begin the road of chemo and hercepten. I turned 42 three days after diagnosis and have three kids ages 13,11 and 6. Hoping I can beat this. I lost my mum to lung cancer when I was 30 and that was hard.
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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.
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Thanks Sue, your story makes me very hopeful
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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!0 -
The chemo X6 or X 4 might have more to do with whether or not they want to do dose dense treatment vs. normal dose. Some chemos can be administered different ways. I know my A/C treatment could have been every 3 weeks or every 2 weeks. I had dose dense and did it every 2 weeks. Maybe that is the difference. I would ask them if this was the reason for the difference.
If there is no huge reason for one or the other it will come down with which you are most comfortable with. Stick with your gut and do what you feel is best for you. It is your life and you need to be comfortable with the decision.
Good luck
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Thank you for your reply! Actually I was advices chemo only, no Herceptin! Is it uncommon to do so?
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Kaka: I'm new to this too, but it's my understanding we do need Herceptin for a year if we are HER2+. I had the additional FISH test done to get exact HER numbders. A score of 1.8 to 2.2 is borderline & I'm sure my onco would treat anywhere in that range. Unfortunately I'm 2.8.
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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.
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Hi ladies,
I heard about a trial of giving Herceptin to HER2+ patients for 2 years, have anyone tried it? Or have more information about the outcome of the trial?
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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.
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Abby,
Trial results showed there was little benefit to extending herceptin treatment to two years (this was for non stage IV patients).
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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...
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I see the Onc every 6 months. They do blood tests & CA 27.29. She said no scans unless something is problematic. I have diagnostic mammo's and US on the "good" breast.
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Add me to the ER-, PR-, HER 2+ group. I start my TCH treatment this week. This seems like a great place to connect.
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Welcome Michelle, try this thread http://community.breastcancer.org/forum/69/topic/578284?page=519#idx_15562 everyone there has done TCH. Good luck as you start.
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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.0 -
Hello, all. I will be starting my TCH Monday. Just wanting to connect with other HER2+ as I go through this "adventure". Concerned about SE; but it seems like everyone is different and all have own SE or minimal.
Best wishes to all those that have been & are going through right now.
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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.
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Soccermom...comimg up to 8 for me. I get mammo and mri yearly, bloods q 6months. If I complain I am imaged...try bot to complain..lol Had bonescan a year ago, last ct was 3 years ago. I see surgeon q 6 and onc q g. Take zometa iv q3months still.
Delighted to be welll...with er/pr neg her 2 disease after all these years...with 2 positve nodes and humungous tumor. Life is good.
I hung out on my treatment thread...the one that started treatment the same month I did...our group still chats on FB and has met several times.
This thread is only a little active but any questions you have will get answered.
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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
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thanks for the reply sewingnut- that sounds like good followup too- may I ask what kind of insurance you have? seems that dictates what kind of care we get...
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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.
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Pvrdk1 I read a lot on the TCH thread during treatment. Lots of good advice there. I just remember everyone saying that treatment is not fun, but it is "doable". I worked during my treatment, but had to take a week off in between. I used short term disability. But I know there were many who worked full time and did ok.
Michelle, yea, I work in the same hospital where i had all of my treatment. So it is hard walkin down that same hall on my way to work!
Soccermom, I have good insurance but I have not had any scans at all. Even before or after treatment. I just have diagnostic mammograms every 6 mos and bloodwork every 4 mos when I see the oncologist. Part of me likes living in ignorance I guess. I figure if there is going to be a reoccurrence it will make itself known with symptoms.0 -
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.
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I'm HER+ and negative for ER and PG. Getting my port on Monday and starting chemo on the 13th. Had my mastectomy (left) on April 10. Back to work full time now but not sure what its going to be like after chemo starts
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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.
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I do hope those of you a ways down the road will keep posting occasionally. I had my first TCH+perjeta on 4/17 and I have a long way to go this second time around IF it shrinks the tumors. It helps to see where we're headed. Thanks.
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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+.
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fujimama: Wonderful to hear about the NED. I've been lurking some in that thread and find the women amazing.
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What is perjeta? Is it new, I have not heard of that one?
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