Triple positive confirmed.

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gooseberry
gooseberry Member Posts: 61
edited June 2015 in Just Diagnosed

I asked questions and looked stuff up but I still don't have a grasp on what this means. I know what it means scientifically, but I don't know what it means for treatment. The her2 is aggressive, so the worry is that it comes back. Does that still make a lumpectomy the best choice? Does it increase the chance the nodes are involved?? Seems to me that removing the breasts would help in it not returning? And that it is serious enough to warrant a double Mas... My lumpectomy is to be the 30th and now this just has my mind all over the place.

Is her2 just for breast cancer? Do I need to worry that kind of cancer is so aggressive its going to come other places when this is all over or it is right now??? Like I have to be on watch for my entire body for the rest of my life? What kind of testing do they do for monitoring for cancer in the future? not just breast but all of it?

So for google, rate for stage 1 and 2 "cancer" (they don't specify her2 status) survival is 93 or something like that %. Her2+ it said it was only 70%, seems like stage wasn't as important as it coming back. So what am I missing here?? I was clinging to the stage 1 on my first pathology report and it kept me calm, now that seems to have been naive and I am kinda freaking out all over again.

I am getting a MRI and seeing the doctors Thursday but I like to come here and get a foundation of understanding so I can get right to the meat of my questions with them. Thanks for any info, you do not know how invaluable this board is for me. :D

PS. with her2+ I see people talking about nodes? Is this something I should ask the docs? Pretty much all I have been told is its a little tumor and all 3 things being positive. Nodes have never been mentioned to me. I am just trying to figure out my prognosis, what it all means and its not proving to be easy. :( Edited to add... I figured out nodes are lymph nodes... duh...See how this has my mind all in the shambles...

Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    Hi!

    To be HER2+ means that your breast cancer cells include an overexpression of the protein HER, which encourages your cells to replicate. So, yes, your cancer is of an aggressive type and may have spread to your lymph nodes. But, that's not always the case. Right now, you have to be concerned about the cancer in your breast; unless it has metastasized it is probably a localized invasion.

    In the past, women who had HER2+ cancer had the worst outcomes. But, nowadays, thanks to targeted therapies like Herceptin and Perjeta, the outcomes of HER2+ cancer have improved. No, it doesn't matter whether you get a lumpectomy or a mastectomy in terms of outcomes. Despite having a 5 cm. tumor and one lymph node involved, I had a lumpectomy after neoadjuvant chemo.

    Because you are HER2+, however, you will probably get some chemo, maybe Taxol (with Herceptin) and then Herceptin for the rest of the year. I do know that Stage I HER2+ patients have less intensive chemo than those of us who were Stage III.

    Good luck, and feel free to post on the triple positive thread. It's full of very helpful women.

  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    So sorry you are here. Early stage breast cancer means it is only in the breast or perhaps nearby lymph nodes. But breast cancer can spread through the lymph or vascular systems (metastisize)and set up home elsewhere in the body, usually bone, liver, lung or brain. When bc is detected early, there is less of a chance it has spread, but even small, node negative cancers can metastasize, so you and your medical team will be more vigilant for years.  

    Her 2 + is considered a more aggressive cancer, but there are also some very effective targeted treatments (herceptin and perjeta) specifically for this type of cancer. You will be offered chemo to kill off any rouge cancer cells that have already left the breast and are elsewhere in your body. See an oncologist or ask your team about neo-adjunctive chemo BEFORE surgery. This is the latest protocol for Her2+ cancer (TCPH), and you get both herceptin and perjeta. 

    Down the road you will also be offered some type of antihormone therapy, either tamoxifen or an aromatase inhibitor. This reduces the estrogen in your body that fuels the cancer.

    Statisticslly, having a lumpectomy (lx) or a mastectomy (mx) has no effect on if you survive breast cancer. Cancer in your breast doesn't kill you, its when it leaves the breast and spreads to your other organs that it is dangerous. Both lx and mx will remove the cancer that is currently in your breast and then you hope, pray, and cross all your fingers and toes that it never shows up outside the breast.

    If you have a lx you will also need radiation. If you have a mx you could possibly avoid rads. Mx does offer some additional protection against having a local recurrance of cancer in the breast or from having a new breast cancer grow. Since it is impossible to remove all breast cells, even with mx, cancer can recur in the chest area, along a scar, or in a lymph node.

    Good luck to you. Glad you found this forum, it offers lots of info and support.

  • Suladog
    Suladog Member Posts: 952
    edited June 2015

    Gooseberry,

    Hey there, I'm a triple positive too. My tumor was 7mm very small, no nodal involvement, but HER2+. I had breast cancer once before on the other side when I was in my 30's and that time I was triple negative. 25 years later I was diagnosed on the other side with Triple positive BC. I just completed Taxol/herceptin chemo 1 time a week for 12 weeks. It's the new recommended protocol for people with HER2+ tumors less than 1 cm and no nodes involved. If you're HER2+ you will be doing some form of chemo as it tends to be aggressive even if the size is small and no nodes are involved. The Taxol/herceptin is followed by Herceptin alone 1 time every 3 weeks for the rest of the year. Herceptin is a monoclonal antibody that goes right after the HER2, it's technically not a chemo so there are no or minimal side effects. Taxol is considered a "gentler" form of chemo, it still causes hair loss, but I cold capped at the suggestion of my doctors at UCSF and kept all my hair. Here I am just 2 months after chemo..uh, that's my spinach from my garden. If you're worried about keeping your hair during chemo I highly recommend cold capping, there are lots of forums about it here on the site. It's a pain in the ass as it takes time, BUT works exceptionally well with the taxol/herceptin combo..as you can see and also affords one the privacy of not having to explain hair stuff to everyone. If you didn't know I was having chemo, you would never notice anything, it worked that well. The 12 week deal means you are getting a much milder dose, one time a week for 3 months, rather than a larger dose every three weeks. It's more weeks which is no no picnic as far has having to go in every week, but my doctors said it's gentler on the system that way. I found it to be so, as the chemo I had 25 yrs ago was CMF every 3 weeks.

    Be careful with Lord Google as a lot of the data on HER2+ is very outdated, and as my oncologist who's the co head of the comprehensive Cancer Center at UCSF told me if you have to have a mutation..that's the one to have right now because they have something for it and ore in the pipeline. 10 or 15 years ago it was a different story. You will find a lot of great information here on this site, and plenty of people who are dealing with the same stuff. Don't be afraid to ask questions here, and of your doctors. You are your best advocate in this. Feel free to private message me if you need any other info.

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