I was so relieved but now...HER2+ and scared again

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jc135
jc135 Member Posts: 47
edited June 2014 in HER2+ (Positive) Breast Cancer

After my left mastectomy last week I was so relieved at no sentinal node involvement...and no axillary dissection required. Everything went well and I haven't even been in much pain. Then today I went to my surgeon for the follow-up and pathology... At first I thought she was giving me good news, as it is still no nodal involvement (0/7) and while the tumor was large (which I knew) it was "only" 4 cm which keeps it to a Stage IIa. So I was feeling relieved (fearing Stage III). But then she said ER-/PR- and HER2+ and poorly differentiated (so, aggressive).  Then I came home and started reading on the web about how aggressive and prone to metastases HER2+ is and now I am feeling sick at the pit of my stomach all over again.

My appointment to see the oncologist is for next Tuesday, but I could use some positive reinforcement in the meantime :-(

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  • Sassa
    Sassa Member Posts: 1,588
    edited August 2008

    Two things you need to keep in mind for HER2+ and poorly differentiated cells (probably grade 3):

    1. Chemo is extremely effective for us

    2.  Herceptin is a miracle drug for us HER2+ ladies and is changing the recurrence and long term survival statistics (cuts recurrence rate in half).

    Remember, any statistics you read about recurrence and survival are based on numbers before Herceptin became available for use in early stage breast cancer in late 2005 (or was it 2006?).  In any case, 5 year data is not available for us as none of us are more than 2 years out from the end of our herceptin treatment.

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited August 2008

    jc135: I know so well how you feel right now. I remember when my surgeon gave me my pathology report - I felt like I'd been slugged in the gut and I cried all the way home (freaked out my poor husband.) That was in February, and people like Sassa on this site have helped me so much. She's right - since Herceptin has only been approved for two years (I think it was 2006), all statistics and prognosis predictions are no longer applicable. It makes the playing field much more level and our futures much brighter. I began chemo in April (taxol/carboplatin/Herceptin), just finished 3 weeks ago, and began my Herceptin-only infusions Tuesday. Chemo was very "doable" and I have felt no side effects from the treatment Tuesday. There are many great threads on this site for Her2+ women where you'll get lots of good advice and support.

    Best wishes to you. Sue

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  • jc135
    jc135 Member Posts: 47
    edited August 2008

    Thank you Sue and Sassa. I am trying to take some deep breaths and keep some perspective.  You are right in that a lot of the information and statistics I am reading are out of date, I think. It was that Grade 3 (yes Sassa, that's correct) and HER2+ status that freaked me out.  It even freaked me out to find that there was a whole sub-forum devoted to this here, as it made me feel like "uh-oh, that can't be a good thing" if you know what I mean.

     I am glad to see that you ladies are doing so well. Sue, looks like your pathology is very similar to mine (everyone of course is unique!)

     I am quite anxious to meet with the oncologist and see what she says/recommends. Thankfully I was able to get an appointment quickly (the first one I tried couldn't see me until October..but these two work together.)

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  • lisettemac
    lisettemac Member Posts: 213
    edited August 2008

    What Sassa said.  My pathology was very similar to yours, although my tumor was 1.1cm and ER+.  Herceptin is truly a miracle drug and very easy to tolerate.  As much as I didn't want to do the chemo, between a poor grade and Her2+, it was necessary.  And I did it and got through it and you will too.  And we'll be here all the while to help you.

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited August 2008

    I'm so glad you were able to get an earlier appointment - sitting around worrying for a month and a half would not be good! Be prepared for the testing - since Herceptin can cause heart damage, you will probably be given a heart test of some kind. I did a MUGA; I started at 74% and at the end of chemo had only dropped 2% - this is good. My onc begins the Herceptin-only treatments if you stay above 50%. I also did a PET/CT scan - you'll probably do this and/or bone scan before chemo.

    You're going to be fine - you're right about our pathologies being similar - my tumor was 2.2 cm but I also had some DCIS and another IDC tumor of less than one cm - all of this leading to my decision to have a mastectomy.

    Deep breaths and hang in there!

    Sue

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited August 2008

    My story might help you too.  I was thought to be stage4 at presentation, due to some areas of my spine, and pelvis lighting up on my first Pet/ct.

    I did have a positive internal mammary node, that couldn't be removed, and they hit that with extra boosts at radiation. 

    After surgery, chemo and rads, a new pet/ct showed nothing. I have been told I was stage3, not 4, and after a year's worth of Herceptin, I just had a good mammo and visit with onc. At this point I am NED. I feel pretty good, and am looking forward to a future, not a funeral.  Onc says I will scans every so often to monitor things, but everything looks good. 

    I know things are very scary at first, but I'm living proof that it can get better.  

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited August 2008

    JC 135, welcome aboard.

    I have similar stats with 2/14 nodes. i am well and have NED...three happy years later.

    Many people survive this.

    Why not you?

    Fists up!

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  • Jyber
    Jyber Member Posts: 38
    edited August 2008

    It will get better for you. The hardest times are at the beginning, and you are most of the way through the beginning. Soon you will be in the middle and then you will be on your way through.

    Her2+ is more aggressive but we are blessed to have herceptin, the "magic bullet."

    I had a tumor of over 4 cm. as well, but like you was delighted to have no nodes positive. That was like a gift to me.

    Unfortunately, I am one of the very few who had heart damage from herceptin. My oncologist was strict about this and stopped herceptin when my LVEF remained at 55% (from an earlier 65-70%) even after a herceptin pause. She did not want to cause any further damage. But YOU are very unlikely to have this happen so will probably get the full benefit of herceptin. Even I hope I got enough of it to do the job.

    I am now feeling great and VERY thankful -- feel as if I was given my life back. Not a bad trade for a "bad boob."

    Best wishes.

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  • jc135
    jc135 Member Posts: 47
    edited August 2008

    thanks all for your supportive words. I did not sleep much last night! And am still feeling a bit gut-punched this morning. One minute I am taking it in stride, then the next I read something that sends me spinning.    Now reading all this about potential heart damage is adding to my fears, as well as all the different possible regimens and protocols...how do I decide if what they suggest is the right one for me? Should I get a second opinion no matter? 

    I know i am jumping to all sorts of conclusions and my husband keeps telling me to stop researching (and scaring myself) and just wait until I see the oncologist, see what her recommendations are; (THEN research...) but I want to be informed with the right questions...

     Fortunately, I am going to a top center (Cornell/Weill NY Presbyterian Medical Center) and the docs there all seem top-notch, but I know that every center has their preferred protocol...

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  • Jyber
    Jyber Member Posts: 38
    edited August 2008

    I very much hope I did not scare you with my mention of heart damage. I just believe in full disclosure, but meant to stress that my case is unusual and far from par for the course. My point was that we HER-2 + ladies are so fortunate to have herceptin available. But I feel dishonest saying that without disclosing that I could not get the full treatment.

    I am still well within normal ranges for heart function, and am in the VERY small percent of those who had heart damage. Plus, heart disease runs in my family (dad died at 63 of a heart attack).

    So PLEASE do not stress out. My bet is that you will do fine.

    I am now as happy as I have ever been in my life (in part because I truly know how fortunate I am) and wish the same for you.

    You will get through this and do lots more great trips. Why not plan one now to celebrate the end of your treatment?

    Jyber/Joan

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  • TammyLou
    TammyLou Member Posts: 740
    edited August 2008

    Yup.

     Every case is different.  Every cancer is different.

    I was diagnosed in January 2005 with regionally advanced cancer...fixed, matted nodes wrapped around my chest wall.

    ER-  PR- HER2+++  Stage 3C

    I took 52 weeks of Herceptin concurrent with 4 rounds of Taxotere and 4 rounds of FEC (an anthracycline like AC.)

    It is uncommon to give the herceptin with anthracyclines, but I had nothing to lose.

    I took a boat load of rads to my left chest wall...front and back in 6 fields with two sets of boosts. 

    My heart is fine.

    My cancer is gone.

    I am not perfect, but I can live with it.

    Tammy Lou

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  • bbd123
    bbd123 Member Posts: 1
    edited August 2008

    I too recovered fine with my right mastectomy with reconstruction - I have a tissue expander in and am back to work.  I have stage 1bc, clear nodes.  Met with Oncologist yesterday (Aug 14)...I will be on 4 rounds of chemo (once every 3 weeks), then herceptin for a year (once every 3 weeks).  I am scared as well after reading about chemo and herceptin.  I'm on the same boat you are jc135.  Let's beat this together!!! 

    I love these positive reinforcements on this board.

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  • WMO66
    WMO66 Member Posts: 8
    edited August 2008

    jc135

    I have been feeling the same way and do not know how to shake it.  I had my right mastectomy on 7/28/08.  Prior to surgery they weren't sure of the exact size of the tumor.  Anywhere from 2.5cm to 5cm.  Luckily, it was only 2.5cm with no node involvement.  I know that is a good thing, but I cannot help but keep coming back to these stupid test results.  I try to tell myself I do what the Dr's suggest and hope for the best.  Maybe we would feel better if there were more statistics regarding herceptin.  Well good luck,

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  • TammyLou
    TammyLou Member Posts: 740
    edited August 2008

    The anxiety you are feeling is part and parcel of being diagnosed with breast cancer.

    Believe it or not.

    There's no one who is diagnosed with breast cancer and "feels good about it."

    You are normal.

    It does get a little easier once you get in the "swing" of treatment.

    The beginnings tend to be fast and brutal.

    My sympathies.

    Tammy Lou

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  • jc135
    jc135 Member Posts: 47
    edited August 2008

    Thanks again everyone, it is heartening to see that there are others with similar situations (although of course, for your sake's I wish there weren't, but you know what I mean!)

    bbd 123 and wm066, it seems we will be on similar schedules through this...although I don't yet know what my regimen will be, it seems that we'll be starting around the same times. Good luck to everyone and hopefully we can help each other through it. One thing I've learned is to try to stop reading these boards and the internet obsessively because it just increases my anxiety, so I may only check in from time to time, but I will surely check in. I may try to take the rest of the weekend "off" from it though!

    I am trying to go out to eat to all my favorite places in the next two weeks or so, in preparation for not wanting to eat for six months Frown

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  • jc135
    jc135 Member Posts: 47
    edited August 2008

    Joan, thanks for your positive encouragement. My Dad also died of a heart attack (but, he was 83) and I have no heart issues that I know of, other than occasional irregular beats, which my cardiologist says is nothing to worry about. I've had an echo and stress test recently which were normal.

     I would love to plan a trip, and in fact had planned to take a celebratory trip of a week to Italy right after chemo (figuring May or June), but my original thought was that chemo would end after six months or so (Feb or March if I'm starting soon). Now I see Herceptin treatment lasts a year, so I am really bummed about that as well...I really live to travel and usually take three trips a year. I am hoping at least that I can be on the Herceptin every 3 weeks instead of weekly regimen. Perhaps then I could take a one week trip in between if I am feeling up to it.

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  • TammyLou
    TammyLou Member Posts: 740
    edited August 2008

    I think you can negotiate that with the doctor.

    I didn't take Herceptin the week of surgery.

     (The world is not going to come to an end if you miss a dose.)

     Tammy Lou

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  • Jyber
    Jyber Member Posts: 38
    edited August 2008

    You should easily be able to take a trip once the chemo is over and you are just on herceptin. Herceptin is relatively easy and most of the time given on a three-week cycle. It is nothing like chemo in terms of side effects. (And thanks to the newer anti-nausea drugs chemo was not bad for me either - ask your oncologist to prescribe Emend for you and take it as directed - really worked for me.)

    Spring is supposed to be the best time to visit Italy.

    I think you will be fine once you get going.

    Best wishes,

    Joan

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  • Sassa
    Sassa Member Posts: 1,588
    edited August 2008

    You should not have any difficulties traveling while on herceptin.  If you are on a three week schedule, you basically have 20 day to 23 days (I was told there is no problems with giving the drug a few days early or late) to play with between doses.

    Or, if you frequently go to one location on a trip (in my case, Maryland to visit my daughter), you can make arrangements with a local oncologist to receive your herceptin.

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  • DebbieB
    DebbieB Member Posts: 161
    edited August 2008

    Hi jc135,

    I have been where you are and I know the anxiety is extremely high right now.  When I was dx'd back in 2001, it was very difficult to find anything good about being HER+.  Only about 20% of us fall into that category.  I was one of those that only did the 4 rounds of AC chemo.  In 2001, you were only offered herceptin if you were Stage 4.  So I just wanted you to know there are some long term survivors out there .... even without the benefit of herceptin.   I'm sure you are going to do just fine and before you know it, all this will be behind you and you will see it as nothing more than a bump in the road!

     Debbie

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  • jc135
    jc135 Member Posts: 47
    edited August 2008

    Thanks again to all. It is reassuring to hear that travel may be possible while on herceptin, I guess that is a silly thing to worry about in the face of all of this, but the thought of a whole year without a trip was adding to my depression. I need something to look forward to, the light at the end of this long dark tunnel!

    I am glad to hear of all of you herceptin gals doing so well, I definitely am "lucky" that this drug is now available to me. I find that sometimes (often!) I imagine the worst and things turn out not so bad (i.e., with the mastectomy, in the end it really was not such a big deal--I was up and out and about within a couple of days. I thought I'd never be able to "handle" having cancer but, you just find you are stronger than you think!   Some moments I even forget for awhile :)

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  • Sassa
    Sassa Member Posts: 1,588
    edited August 2008

    LOL, JCT.

    Funny story on myself: The day after my second chemo with AC (1/2/07), I decided I needed

    to affirm to myself that I was going to be OK so I called to book a cruise for October 07.

    The only problem was that the antiemetic I was on caused me to have blurry vision and to slur my speech.

    I was talking to the travel agent and kept saying to her, "I'm not drunk; it's the drugs I'm taking."Cool

     Lord knows what she was thinking.

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  • Gabrielle
    Gabrielle Member Posts: 73
    edited August 2008

    Hi -- I'm almost 9 years out.  I was diagnosed Dec 1999 with Stage IIIa: Her2/Neu; 9 positive nodes out of 21; 5.2 cm tumor.  Pathology report was "poor" all the way down. 

    I did a year of Herceptin after the conventional treatment was done.  I haven't had a recurrence.  Keep the faith.  :)

    -Gabrielle  

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  • lisa39
    lisa39 Member Posts: 255
    edited August 2008

    Gabrielle,

    Thanks for posting.  It's great to hear from long-term HER 2 survivors.  It gives me a lot of encouragement and hope for the future.

    Lisa 

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited August 2008

    During chemo, I took a long weekend trip with my husband, another long weekend trip to the beach in Mexico with my whole family, and flew to visit family in the Midwest for a week and a half. I usually felt fine about 5 days after the treatment - so I had two "normal" weeks then chemo week. The first two months I continued working; I'm a teacher so I finished chemo during summer break.

    Life goes on during treatment, and I know I was surprised how good I felt and how much I was able to do. Hopefully, you'll discover the same.

    Sue

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  • Estepp
    Estepp Member Posts: 6,416
    edited August 2008

    Thanks for that Gabrielle , we need to hear stories like yours!

    Laura

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  • lfasano44
    lfasano44 Member Posts: 50
    edited August 2008

    Thank you so much for sharing your story which sounds similar to mine.  I was diagnosed at 30 and have two girls 6 and 4 and was told I had breast cancer 6 weeks after my son was born.  I need to hear all these positive things to reassure me that I CAN and WILL get through this.  Thank you again so much.

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  • Yogi70
    Yogi70 Member Posts: 654
    edited August 2008

    jc135, I am er/pr- her2++ and I was freaked out when I learned my biology and stage (which was III).  But after I read a few inspirational stories on this site I felt better.  You will too.

    Gabrielle, you story is wonderful!!

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  • jc135
    jc135 Member Posts: 47
    edited August 2008

    Well I saw the oncologist today and she was very reassuring...she said that I was early stage and healthy (other than this cancer, obviously) and should do fine on any of the regimens...she said that five years ago things would be very different but with Herceptin, everything has changed for us HER2+ folks (as of course I already knew all of this, but it was good to hear this from the professional.)  She was a bit surprised, I think, that I walked in with so much information already (lots of print-outs on herceptin and the different studies and protocols!) But now comes the tough part...choosing a regimen. She is willing to give me what ever I want--we talked about AC-TH, TCH, and a modified dose-dense AC-TH which has been found (in one small study) to be less cardiotoxic. But she stressed that this study was small (only 70 patients) and single-arm (with no controls) and not really designed to test cardiotoxicity, so she didn't seem to have too much faith in it.

     Her first recommendation was AC-TH as she said that is the most proven, and she more or less down-played the cardiotoxicity (said its a very rare event) but she felt any of the options would be workable for me, and its up to me. She welcomed me getting a second opinion if I wanted it.

     So, now this big decision. I have read the ACTH vs TCH thread and I am leaning towards TCH for several reasons, but, I still have lingering doubts--what if I make the wrong choice....I want, of course, the best chance possible for long-term disease-free survival!

    Well tomorrow I will call and see if I can get an appointment for a second opinion...I sort of feel like so far I have no real "opinion" at all. My impression is that no one really knows what works best! I have a few weeks to come to a decision, as she said they wait 4-6 weeks after surgery to start, so I won't start until around Sept 8-15 or so.

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  • nitewind
    nitewind Member Posts: 64
    edited August 2008

    Hi Jc, just wanted to let you know that I did the herceptin for a full year. They will monitor your heart about every three monthes to make sure everything is fine. Also wanted to let you know that the herceptin for me was very easy to take, virtually no side effects. I was worried about my heart because I have a heavy family history of heart related problems. I finished my herceptin in December of last year, I'm currently NED and my heart never changed one bit, just as strong as it ever was. Personally, I thank God everyday for the herceptin.

    Best of luck to you

    hugs

    Susan

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