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FrannieS
FrannieS Member Posts: 5
edited February 2015 in Just Diagnosed

Hello all.

I'm new to the forum and recently diagnosed. I received my biopsy report results on my 56th birthday. Lousy karma, huh?

Anyway, I'm HER-2 NEU positive. I had an MRI today. I'm told the plan is to proceed with surgery if tumor is < 2cm. If greater, I'm to have chemo first then surgery, then more chemo. I was told to plan on Herceptin for a year.

I've not been told if surgery is mastectomy or lumpectomy. I have not had sentinel node biopsy yet. My mass is palpable and at 12:00 in the right breast.

So far I feel like I'm playing a waiting game. Each new bit of info is more ominous than the last. I'm practicing patience the best I can.

I would like to hear from others who may have had similar experiences.

Thank you for being here. I have a feeling I will reach out ofte

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2015

    Hello & welcome Frannie,

    You are correct, it is a waiting game. I am not her +, so I have little knowledge on that. I got to chose on my surgery, my Breast surgeon strongly suggested a lumpectomy. It was easy. He did take a good size chunk out of my arm pit. Hopefully your nodes will be clean.

    The reconstruction process for those that have a have a mascetomy, or chose too, can be difficult. I have read some horror stories. But like everything, if things are great we tend not to need to discuss that.

    My chemo was aggressive ( stage 3 ). Some ladies breeze through that with minor complaints. I was not one of them, but I was able to stay on schedule, no big problems. The fatigue at the end of chemo is common. My advice always is, be kind to yourself. This is the time of your life to put yourself first. Keep busy if you can, but when you need to rest don't hesitate. The body is bombarded with poison, it takes time to heal and return to normal

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015
    Dear Frannie - Just a quick note to welcome you to a group that NO one wants to be a member of. I hope we can all help support you through all of this.

    The board may be rather quiet this weekend bu I' sure others will be along soon to help answer questions.

    In the meantime, you'll find a wealth of info on the HER2+ forum within the discussion board as well as on the main site, where you should find very useful articles.

    Treatment for HER2+ has made huge strides that will be of great benefit to you.

    I know this must be a rough time; hang in there. s the pieces of your particular diagnosis start to come together it gets a bit easier. Good luck.



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  • roadrash
    roadrash Member Posts: 145
    edited January 2015

    Hi Frannie. I can't give any input or advice on your situation. Happy Belated birthday and next year it will be so much better. It might be a good idea to start keeping track of your medical reports, information, etc. There is going to be so much information coming at you over the next few weeks. As people have suggested to me, it might even be a good idea to line up a second opinion. I have learned from this board that it is a good idea and a different medical perspective can allow for more options. Let us know how it goes.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    Frannie - so sorry, too, about it happening on your birthday. All of this is a bear.

    If you can, strongly consider recording all of your consults with your surgeon and other doctors. If you have a smart phone this is pretty easy. It's very, very useful to have those recordings to go back and listen to, take notes on important issues, and keep in your files.

    I'm attaching a link to a page on this site that contains a wealth of advice on how to get organized to deal with this. I hope it helps some. https://community.breastcancer.org/forum/5/topic/748296?page=9#idx_258

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2015

    frannie - sorry your birthday contained an unwanted surprise!  If your MRI reveals a mass larger than 2cm my assumption is that due to your Her2+ they would like to administer chemo prior to surgery in order  to include the use of Perjeta.  This is a newly approved drug, it is used with Taxotere (and usually Carboplatin), and Herceptin, for six cycles - and is only FDA approved for use in early stage breast cancer prior to surgery.  One advantage is that you can actually see the drugs working, and having chemo also potentially allows more latitude in type of surgery, as your tumor can disappear and may allow a lumpectomy.  Sentinel node biopsy is usually done during surgery, but if you have chemo first I would encourage you to ask if you can have it done simultaneously with your port placement - this will allow better staging information.  If you have chemo, then surgery and do not do the SNB, you may never truly know your nodal status.  Imaging is not always reliable for determining nodal status, nor is palpation during exam.  If you have surgery first due to having a smaller than 2cm mass - you have a broader choice of chemo regimens, if Perjeta is not going to be included.  It is important to note also that both Herceptin and PErjeta are not chemo drugs - they are monoclonal antibody drugs used as targeted therapy.  If you have chemo first, the drug that would continue after surgery is Herceptin, but you would be finished with chemotherapeutic agents at that point.

    Do you know your hormonal receptor information yet?  If you are ER/PR+ there is a Triple Positive thread:

    https://community.breastcancer.org/forum/80/topic/764183?page=893#idx_26780

    There are TCHP threads:

    https://community.breastcancer.org/forum/80/topic/818704?page=4#post_4257676

    https://community.breastcancer.org/forum/80/topic/823947?page=2#post_4260597

    And, if you are ER/PR-, this thread:

    https://community.breastcancer.org/forum/80/topic/826496?page=1#post_4233361

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  • loriekg
    loriekg Member Posts: 263
    edited February 2015

    Hi Frannie--welcome, and I, too, am sorry about your birthday surprise. I would tell you about my experience, but SpecialK just did! No seriously, what she wrote is exactly my story. Just started on chemo last week, every 3 weeks for 6 cycles, then surgery (no mention of more chemo?) then possible radiation. Oh I will continue with Herceptin for another 8 months (to total 1 year counting chemo infusions).... then hormonal therapy for 5 years. I did the genetics testing last week and since the outcome will not effect my chemo plan, they will do the entire panel of tests and so I won't get results back for a month.

    I can tell you the waiting game was sheer torture. Once you meet with the MO and know your plan of attack, you will feel sooo much better! That may be hard to believe right now, but it's true. --Lorie

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2015

    also register at the NCCN website and read the professional version ( red logo) of the breast cancer treatment guidelines. I wish you well!

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  • april25
    april25 Member Posts: 772
    edited February 2015

    I guess I'm somewhat similar: DX mid-November '14. Age 57. Found lump myself-- 3cm 12 o'Clock R breast. ER+, PR-, HER2+. Am currently doing chemo first: TCHP. I'm in my 3rd cycle of 6 total. Surgery will be after--but I'm not sure what kind yet! I'm a bit small-breasted so a LX might leave a major divot...!

    I'm sorry you're here. I hope you are figuring all this mess out! It's a LOT to handle at first. It drove me crazy, anyway... but things settle down a bit once you get your doctors in place and figure out a treatment plan.

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  • Bippy625
    Bippy625 Member Posts: 890
    edited February 2015

    hi Frannie!

    We have similar dx. I had a large (and more than one) tumor, so it was chemo, surgery and now rads. I am also HER+. It was known to be in one node already, so they just removed a bunch at surgery.

    Perjeta is the drug for us, along with herceptin. It works like magic. I had a CPR, or a complete pathological response, to chemo.

    Sorry you are in the club, but you are not alone. I was 46 at dx, and celebrated my 47th a few weeks after by starting chemo and cancelling a dream vacation. My onco has many BC patients in their 20's. This chit aint right.

    Best wishes, this is the best place to be

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  • FrannieS
    FrannieS Member Posts: 5
    edited February 2015

    SpecialK

    Thanks so much for your input. Spoke to my oncologist for the first time today. My plan is chemo with Perjeta, surgery and chemo and Herceptin.

    I feeling so positive by all the wonderful responses here

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  • loriekg
    loriekg Member Posts: 263
    edited February 2015

    Hi Bippy625

    First of all--so happy for you to get a CPR!! As our dx and treatment plans look identical, I was wondering if you were always expecting to have radiation included in your treatment plan? My MO said that would be questionable and may depend if I had a mastectomy vs. lumpectomy. I thought if I decided on mastectomy, that radiation may not be necessary. Especially with a CPR? --Lorie


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