Recent diagnosis HER2+ Lumpectomy or Mastectomy?

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JeanneB
JeanneB Member Posts: 6

I was Diagnosed a week ago with Her2+ ER+ PR+ breast cancer.  Surgeon removed a 1.7c  lump and sent it for biopsy and came back cancer. Margins are clear.  She felt it needed to come out anyway so rather than needle biopsy she removed.  Next step is looking at lymphnodes this coming Monday Morn. 

My surgeon is very pro lumpectomy with chemo and herceptin.  She is negative on Masectomy and said the recurrance rate for my type of cancer is exactly the same regardless of getting a lumpectomy with the treatment above or if I get a full masectomy.  Does this make sense?  I forgot to ask her if the Masectomy requires the chemo and herceptin followup.  Does anyone know If I get a Masectomy will I need same follow up? 

If I don't need the chemo and herceptin it makes sense to me to get Masectomy just to get rid of the WHOLE problem quickly rather than go through a year of all the treatment. I am really confused and afraid.  I would like to make a choice soon.  Thanks much for your responses.  Jeanne

Comments

  • jennifer808
    jennifer808 Member Posts: 7
    edited April 2011

    Jeanne B - I wish I could tell you that a mastectomy would spare you from chemo, but unfortunately, it won't.  The goal of the surgery is to get rid of the cancer locally - that is, in the breast.  Chemo and Herceptin will treat you from head to tow in case there are any errant cancer cells floating around in your bloodstream looking to set up camp in other parts of your body.  You said your doctor has told you taht the chances of local recurrence are the same - this is becuase even if they remove the entire breast - or both of them! - there is no way they can remove every bit of breast tissue you have.  Your breast tissue not only extends down to your muscle, but also under your arm & almost up to your collarbone.  You sound like you have a very wise doctor who is telling you to take the path of the lesser surgery as that is what he/she feels is necessary (i.e. not overkill) to give you the best outcome.  I had a lumpectomy, chemo, and rads (radiation) back in '05 and am also HER-2/neu positive.  I have not had a recurrence and am very happy I went with the lumpectomy rather than mastectomy.  One thing to keep in mind is that you can always change your mind about a lumpectomy and get a mastectomy later, but if you get a mastectomy now, there is no going back.  I hope this is helpful and wish you the best of luck.

    ~~Jennifer

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    Jeanne - having a mastectomy won't avoid the chemo I'm afraid. The difference between having a lumpectomy and a mastectomy is radiation. When you have a lumpectomy you will need radiation as well. Herceptin is very important for HER2+ve bc. My HER2 cancer was smaller than yours and node negative but I still had chemo/herceptin and I'll never regret it.

    Sue

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011
    Jennifer - good to hear you are 6 years out and cancer free!!!
  • JeanneB
    JeanneB Member Posts: 6
    edited April 2011

    Thanks so much for your quick responses.  You each gave me information I need.  Does anyone know about the recurrance rate issue I wrote about.  Is recurrance rates for her2+ the same no matter if you get lumpectomy or masectomy? Jennifer thanks you did address this..In addition is anyone aware of statistice they can direct me to or quote or the rate of recurrance?   Also, any thoughts on, given this is agressive, how likely is it that it travelled somewhere else. I am having terrible neck pain (May be stress and effects of tube in throat when had lumpectomy)  Margins were clear and Surgeon will check lymphnodes but thinks based on her looking at and feeling them they are OK.  How else can this cancer travel?  Again my most pressing question is the recurrance stats for the treatments

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    JeanneB - my onc told me I had a 23% chance of distant recurrence (stage 1 node negative) and that having chemo/herceptin would halve that. I'm also on Arimidex for the hormone receptors and that would also reduce the chance of recurrence. If you are premenopausal, they would prescribe Tamoxifen. Arimidex is for post menopausal women. After 4 months on Arimidex, when I had my last mammo last year, my onc said you can already see a change in the density of the breast, so that was good to know.

    As Jennifer said - the radiation helps prevent local recurrence. There would be no difference in distant recurrence rates based on lumpectomy or mastectomy. I was told a lumpectomy + rads = mastectomy.

    The important thing is to understand just how agressive HER2+ve bc is and do everything you can to help yourself and if that means chemo/herceptin so be it. They have only made herceptin available to early bc patients 6 or so years ago I think and they are now talking about giving chemo/herceptin for even smaller than 1cm tumours. We are lucky to have it available to us.

    I certainly wouldn't rush in to having a mastectomy as Jennifer said, you can't change your mind once it's done. I've avoided it so far and I'm glad.

    Sue

  • InTwoPlaces
    InTwoPlaces Member Posts: 354
    edited April 2011

    Jeanne,

    I'm sorry you had to join this club, but it's a lot of good advice and nice people here!

    You asked about recurrance stats, but this can't be told until you have had your surgery. The Dr will tell you your stage and grade of the nodes and from there your stats can be determined.

    Remember though, it's only stats and you should treat them like that.

    I had 7 positive lymph nodes and it was in my armpit where I felt the lump, my tumors in my breast was very small and they were difficult to find.

    I was adviced to have lumpectomy and I have read that there is 1 % more chance to have a recurrence compared to if I had choosen mastectomy. I choosed lumpectomy and I had a total axillary dissection and I found the surgery very easy.

    You need to have Herceptin for a total of one year, I finished chemo a few weeks ago and I'm getting Herceptin every 3rd week. The only SE I believe comes from is that I'm swollen under one of my eyes for about a week after the infusion.

    The next step for me is the radiation to my breast, armpit to above my collar bone, since - like you said - my Dr's are also very concern the cancer had spread. So far as I know, it can spread trough the lymph nodes and by the blood.

    In your post you stated that you are ER+ PR+ HER2+ and I think there is a forum here for tripple Positive womens.

    I think if you find that thread you will have a lot of good advice!

    Hugs,

    Carina

  • lago
    lago Member Posts: 17,186
    edited April 2011

    My BS would have recommended an lumpectomy but my tumor was so big (total size 6.5 but invasive part only 5.5cm) and my small breast (large A/smallB) that there really wasn't much breast tissue left. I did a double because there was stuff in the other one too (small amount of LCIS). I believe your surgeon is giving you good advice.

    Also having an MX doesn't guarantee no radiation. If your tumor is large or too close to the chest wall they might want to radiate. Not all the time. I was given a pass in spite of the size of my tumor and close margins but that was because my treatment was/is so aggressive.

    I have no regrets but losing a breast is a big deal. You will lose sensation. In most cases loose your nipple. You breasts will not match… and several other issues. Granted there are pros to the MX too. It does reduce the risk since there is much less tissue but they will be watching you so closely now they will catch it early.

    Wait till you get more information from you path. You can do the lumpectomy then if you change your mind do the MX. Once you do the MX there is no going back.

  • cellomomof5
    cellomomof5 Member Posts: 71
    edited April 2011

    Seconding lago's point that having a mastectomy won't guarantee no radiation.  Hopefully your cancer will not have spread to nodes, but there are situations where enough cancer is found in the nodes that the underarm area needs to be radiated as well.  Once you have your path results, you'll have the information you need to make the lumpectomy vs. mastectomy decision.

    Another distinction to keep in mind would be between the recurrence rate and the survival rate. Lumpectomy + rads does have a statistically higher recurrence rate than mastectomy, but the survival rates are the same.  

  • LouLou40
    LouLou40 Member Posts: 180
    edited April 2011

    I was 39 at dx and went with my surgeons recommendation of a Lumpectomy and axillary node clearence due to multifocal. I only have small breasts (B cup) and I had 2 tumours 2cm and 1.5 cm and I have a very good cosmetic result

    I did Chemo, Rads and Herceptin which took 8 months and I was so glad by the time I got to the end of treatment I didn't have to face any further surgery apart from getting my port removed. I was able to go back to work in the corporate world  without having further time off for reconstruction.

    It's a personal descsion, but the Her2 factor isn't a contradindication to lumpectomy. 

  • JeanneB
    JeanneB Member Posts: 6
    edited April 2011

    Wow...This forum is outstanding.  So many caring people on here.  Thanks for all the advice.  So sounds like the pathology results come after checking the lymphnodes.  I hope my dr. gives them to me but I will make sure I ask and then post them here.  My mass was deep in my left breast close to the center of the top half of the breast.  Do I need to be concerned about radiation in this area since it is just over the heart?  Thanks.

  • Slainte
    Slainte Member Posts: 152
    edited April 2011

    I don't believe there is a different local recurrence rate for her2+. My understanding is that local reoccurrence rate is slightly higher for lumpectomy, but overall survival rates are similar. The choice is very individual. I chose mastectomy because my breasts are small and the lump was near my nipple so a lumpectomy would have taken most of my breast and nipple. As well I knew before surgery that because of my size and location of lump I would only have radiation if three or more lymph nodes were affected. I wanted to avoid radiation if possible. They analyzed my breast tissue after mastectomy and found a second small IDC area so in hindsight I'm glad I had the mastectomy, but everyone's choice and situation is so individual.



    Christine

  • libraylil
    libraylil Member Posts: 528
    edited April 2011

    Jeanne, my rad oncologist showed me the treatment plan and he was careful to miss the heart and lungs. they work in mm and are very precise. I'm also triple positive and had a lumpectomy with chemo. I have 6 more rads to go.



    LouLou Our stats are very similar. At my biopsy the radiologist sent me into hysterics by telling me I would need a mastectomy due RO the tumor being multifocal. when I later saw the surgeon and oncologist they both recommended a lumpectomy. So far it looks fine. Finishing up rads and a few more months of herceptin. glad to hear from another multifocal lumpectomy. Libraylil

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited April 2011

    JeanneB - you may be eligible to receive radiation for only 5 days if they put an implant in your breast - I'm sorry, I don't know what it's called, but my gf is getting that now. I definitely would recommend a lumpectomy over a mastectomy - don't make MY mistake, thinking that I could avoid chemo if I had an MX. I was very confident this would be the case for me (my onctoype score came back in the "low-intermediate" range - a number 22) - and my oncologist was patting my on my head, sending me home with just a prescription for Arimidex (I was post-menopausal) when he realized he didn't have the results of my FISH report..........10 minutes later, the rug is pulled out from under me again, and I'm sitting in his office listening to him say I would need 4 months of chemo with a year of Herceptin! I felt then I went through the mess of the mastectomy for NOTHING! And the immediate recon I chose also turned into a nightmare (I ended up with mrsa in my abdomen - and a large hernia.)  So you can see why I am totally against mastectomies unless they are ABSOLUTELY necessary!

    One question - have you had an MRI done on both breasts? If you have dense breast tissue, before any conclusions can be drawn about anything, most BS's requests MRI's to see if there's anything else going on. Also, even though you know already that you're Her2+ - be sure to ask your oncologist to send the tissue out to a second laboratory for a second reading/opinion. Labs DO make mistakes! Good luck with everything and I'm so sorry you had to join us here.

    P.S. - ask your oncologist about the possibility of getting Navelbine (instead of the Taxols) with Herceptin. A new study proves it works just as well for early stage Her2+ breast cancer - and it won't cause you to become bald or damage your heart.

  • JeanneB
    JeanneB Member Posts: 6
    edited April 2011

    Yesterday I had my Lymph nodes checked and the results showed no cancer.  I am relieved about this.  So far I think I am T-1 N-0 M-0.  But not really sure. I was told that in a couple of days I will get my Pathology results.  They need to break down a couple of nodes removed to assure no cancer in the smallest of cells (I think this is standard operating procedure). Anyway, I will be referred to a Dr. Barr at university hospitals in Cleveland.  I was informed he is doing a clinical trial for the cancer that was in my mass and he is one of the top oncologists in the field.  It is my understanding he is the one for me to discuss the pros and cons of going masectomy or accepting the lumpectomy that happened 2 weeks ago.  I will post my pathology results, if I can decipher them..Thanks again for the thoughtful and informative posts....Jeanne 

  • Aussie-Sharon
    Aussie-Sharon Member Posts: 65
    edited April 2011

    Hi Jeanne

    I was diagnosed with BC in 2002, I am now almost 9 years since diagnosis.  I had a mastecomy, no choice of a lumpectomy as had DCIS plus Invasive, I had an immediate reconstruction as at the time the invasive part wasn't in the picture:)  I had HER2 + but ER/PR neg.

    I had chemo, radiotherapy and was very fortunate to be accepted into the HERA trial at the time and had Herceptin every 3 weeks for 12 months.

    I've been well and continue to have 6 monthly checks.

    I hope all goes well for you with your appointment and I believe you can download a sheet on how to interpret your pathology report, or you could all the years ago I was diagnosed, I found that really helpful.

    Cheers Sharon

  • lago
    lago Member Posts: 17,186
    edited April 2011

    Also your doctors should be happy to explain your pathology. My onc. was ready to go through it with my but I just had a few questions. I had done a lot of research before I met with her so I would know what to ask… and get a copy of your pathology report. You might have to ask but they can't refuse you.

  • JeanneB
    JeanneB Member Posts: 6
    edited April 2011

    Thanks for the best wishes Sharon and I will search for the downloadable interpretation sheet you mention ...And Iago I will ask for a copy of the report...I love the support you all have been giving me..Talk soon.

  • Aussie-Sharon
    Aussie-Sharon Member Posts: 65
    edited April 2011

    Hi Jeanne, Under the home page of this site they have a "pathology report" section, it has all the definitions of the words that your report will have and explains what it all means.  I found it very helpful as sometimes I would hear what the oncologist was saying but it did not sink in...so I would take home my report and read through in my own time and be able to understand all the terms...and it allowed me to be better informed to ask questions next time I'd see the oncologist.

    Best of luck Sharon x

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