Lumpectomy or Mastectomy - NEWLY DIAGNOSED & CONFUSED

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juneaubugg
juneaubugg Member Posts: 951
May 18, 2012 diagnoisi IDC 1.4cm, Stage I, Grade I, ER+/HR+, HER2-. 44 yrs old

I'm afraid if I get a lumpectomy with radiation that if there is any future recurrence my reconstruction options will be very limited. Right now I can have a nipple sparing mastectomy. Of course, if my margins are bad, I will need the mastectomy anyway, right? I have two friends that had a lumpectomy and ended up n and out of surgery and eventually loosing the entire breast anyway.

I am a solid B on my left and WAS a large A on my right side (the side with the tumor). You can already see a widening of the size difference from all the biopsies (although only one area was cancerous). So I will need some type of reconstruction in my right breast to bring it back to some comparable size. I can't just leave it significantly smaller;that's just for me.

I go to the oncologist tomorrow and then the reconstructive surgeon. I'm trying to make sure I have all the questions I might need answered to make an informed decision. I know the recovery from flap surgery is significantly longer then a basic lumpectomy, but I can't help but feel it might be the best choice for me.

Here is what I have come up with so far... Any thoughts on additional information I need? I'm so scattered right now.

• Based on my specific histology what are the chances of recurrence with the following?
1. Lumpectomy
2. Mastectomy
3. If BRCA I? II?
• What are the risks and side effects of radiation?
• What should I avoid during treatment?
• Will radiation therapy affect having breast reconstruction?

I'm SO confused!!

Comments

  • Cindyl
    Cindyl Member Posts: 1,194
    edited June 2012

    You will also want to ask about what kind of reconstruction would work best in your case, and does the surgeon you are consulting do that kind of reconstruction.  There are lots of options, see the Breast Reconstruction topic for more on that. 

    Confused is perfectly normal.  But the good thing is you do have some time to look at all of your options.

  • HealingDreams
    HealingDreams Member Posts: 50
    edited June 2012

    I'm surprised that they staged your tumor before surgery. They don't know its actual size, and they don't know if it's in the lymph nodes. Information about both will affect stage.

    Stage I and Stage II sisters typically get the OncotypeDX test done to determine if classic chemotherapy will be helpful, or if the risks outweigh the benefits. The OncotypeDX also tells each of us our risk for distant metastasis.

    You might want to read Judy C. Kneece's book, Breast Cancer Treatment Handbook. It provides a lot of basic information that will help orient you.

    Kneece's book was given to me by the group who diagnosed my cancer. When you have a chance, tell the group who diagnosed you to provide this book to their patients, too. It does wonders to have the information you need when you need it!

  • juneaubugg
    juneaubugg Member Posts: 951
    edited June 2012

    Cindyl -Not sure why you are surprised they staged me.  The stage might have to be changed once they check my nodes, but based on current information/pathology it's stage 1 at 1.4cm, Grade 1.  I will be getting that test and have taken the BRCA test and get the results this week.  I am trying to decide what surgery to get so I am basing this on all the information I am provided PRIOR to first surgery.  I don't want to go through this twice.  I am going to meet the PS and MO tomorrow and want to be prepared with questions to help me gather more information.

  • HealingDreams
    HealingDreams Member Posts: 50
    edited June 2012

    I was surprised by the stage because I wasn't staged based on the biopsy report. But, I've just read in the NCCN Guidelines for Patients that it's not uncommon. So, it was just my lack of information.

    Glad you are getting the OncotypeDX and BRCA test as well. You will have a lot of information to base your decisions on.

    Here is the link for Guidelines for Patients by the National Comprehensive Cancer Network (NCCN): www.nccn.com/cancer-guidelines.html. 107 pages but it's well organized and clear writing. Several of your questions are answered in this booklet.

    It is also possible to read the guidelines for physicians if you register. 

  • juneaubugg
    juneaubugg Member Posts: 951
    edited June 2012

    Thanks so much HealingDreams....

  • 25weeks
    25weeks Member Posts: 76
    edited June 2012

    I am awaiting surgery on June 18th, and was also told staging would be done once they remove the tumors.  I have what appears to be two tumors in my right breast (possibly one larger one since they are close together).  Grade 2. Like, you, I wanted to have as much information at my disposal before making the surgery call. 

    I was in the same boat you are just a few short weeks ago.  I was diagnosed on May 11th.  I'm only 40 and have 2 young children at home.  My BS said lumpectomy was an option, but I am only an A cup, and my right breast is already smaller.  I immediately had the genetic testing done, which came back negative, thankfully.  My BS did say that had that been positive, she would strongly have encouraged a BMX since your odds of recurrence are so much higher if you are BRCA positive. 

    One great decision I made was to meet with my MO *before* surgery.  I had originally been told that you typically don't meet with your MO until afterwards, but that consulation was the best one I could have had.  I was also trying to decide between lumpectomy and mastectomy.  Lumpectomy seems the less invasive route, but radiation is no walk in the park and could affect your reconstruction options.  Due to my age and the multifocal nature of my cancer, my MO strongly suspects that I will need chemo.  I'm glad I knew this before surgery as well.  I also asked my MO about the Oncotype test, and she said that would definitely be something we do after surgery.

    I also didn't want to be worried about recurrence.  I also met with two PSs.  I didn't care for the bedside manner of the first, but I loved the second.  I'm so happy that I trusted my instinct on that one.  In the end, I decided on a nipple & skin sparing BMX with immediate reconstruction to Sientra TEs.  Even though my PS thoroughly reviewed each reconstruction option with me, I am quite thin, and the implant route was best suited for my build.  However, he did say that should I end up needing radiation, he would suggest we go with the Latissimus dorsi flap *after* radiation is completed because radiation can cause the tissue & implant to become hard.

    I read a lot of information, and I agonized over this decision.  It's not easy.  But I'm trying to make the best of it, and hey, I'll have some nice, larger, foobs that are cancer-free once all is said and done.  You're not alone and don't feel rushed to make a decision.  Ask as many questions as you need to in order to feel comfortable with your decision.  Did you have a breast MRI?  

    Hang in there. Hugs.

  • juneaubugg
    juneaubugg Member Posts: 951
    edited June 2012

    Thanks 25weeks.  I am leaning toward a MX on only the right side; but it might be better to just go through this once and have a matching new set right?  (trying to keep me sense of humor here).  What are Sientra TEs?  I am so thankful you posted.  I sometimes feel like I am the only oone who understands my train of thought. My family seems to think I'm being a bit drastic and should just have the lumpectomy "and be done with it" (dad).  My husband is supportive in any decision I make.

    Robo - I do have dense tissue, but even by BS couldn't feel my tumor. It was found during a regualr annual mamo (thank god I go to a place that uses digital equipment).  I have had MRIs and 3 additional biopsies which have all come back clean.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited June 2012

    Hi, juneaubugg - that's a tough question, and every answer is right - for someone.

    Here is how I made my decision:

    I was a dx with both DCIS and IDC in the left breast. The Breast Surgeon offered a lumpectomy with rads but because the cancer was multifocal, she felt I wouldn't be satisfied with the results (she'd have to take a huge wedge of tissue out), and that a UMX would be better.

    Well, I was a 38DD/38DDD, and there was no way they could match the girls up even with a reduction on the right (which I had always wanted) so the decision for a BMX was easy.

    That, plus the fact that with my history (Mom had BC) and that I had very dense breast tissue making it difficult to diagnose the right side, made me feel very comfortable with my BMX decision. Turns out that no cancer was found in the final path report on the right, but I'm convinced (as was my Radiologist) that it was just a matter of time.

    I am six months out from surgery, I've healed really well, and I'm done with my fills. I got TEs in preparation for saline implants in September. I postponed the exchange surgery so I could lose a signficant amount of weight first.

    I was fortunate. All my margins were clear, and there was no cancer on the chest wall, or any lymph node involvement. But we didn't know that until after the BMX - when the final pathology report came in! I did not need chemo or radiation. I will, though, have to take Arimidex for five years starting in the fall for my ER+ status.

    I didn't want the extra recuperation time of any of the flap surgeries, and I didn't mind having the TEs in. I'm 61, and have had droopy, heavy, big breasts my whole life. I was ready for perky. If I have a problem with the implants in 10 or 20 years, well, I'll be 81 and I'll deal with it then!

    Other ladies have gone for the flap procedures and have had wonderful outcomes. They are very happy with the choices they made. There are also good reports here about fat grafting.

    Some of my friends have had multiple lumpectomies, and finally made the decision for mastectomy. Others have had one lumpectomy years ago and have had no evidence of cancer since then.

    I know I had the major surgery for a relatively small cancer, but I have absolutely no regrets. (But I will be much happier after my exchange, when I cross over to the Squishie Side.)

    Wishing you the best  - please let us know what the docs have to say!

  • VickieDallas
    VickieDallas Member Posts: 6
    edited June 2012
    Still figuring things out but this is my story, so far...

    I am 38 years old. I found my lump completely by chance while working at my desk, with my puppy on my lap. Felt the urge to touch and there it was. I had my biopsy done on May 29 and got a positive result on June 4th; met with the breast surgeon on the 7th and had an MRI, CT, and Bone Scan on the 8th, all came back negative. :) I have IDC, 1.9, ER+, still not sure about the Her2 status. It has a high replication rate - hi KI67. Today I had the genetic test done. Therefore I have a little over two weeks to research and consider treatment options. If the gene comes back positive I will have the bilateral mastectomy, no questions asked. But I am still considering it as a possibility even if it comes back negative. Next, I will meet with the plastic surgeon to discuss reconstruction options, and after that the oncologist and follow up with surgeon. I was told today that because of the aggressiveness of the tumor I will probably need chemo regardless of the type of surgery I get. I do feel comfortable with my doctors. And I am confident that I will make a well informed decision.

    Fortunate that I am being treated at the Margot Perot Center for Women in Dallas.

    The hardest part has been telling my loved ones, but I am extremely blessed to have a lot of support - even at a distance, no family or good friends close by - so important!

    Good luck everyone!!! :)

  • VickieDallas
    VickieDallas Member Posts: 6
    edited June 2012

    PS:  My biggest regret would be if I take the easy way out - less drastic solution - and have to deal with this all over again, and in a worse way.  I guess, the better informed the best decision you can make.

    It is your life, you choose what is best for you!  That is my goal!

  • edot
    edot Member Posts: 72
    edited June 2012

    I found my lump in 2010, and had the lumpectomy. I was 55, post menopausal and my tumor was upper outer quadrant left side. Since I'm a D, and my left was a D+, I was pleased with the lumpectomy outcome. There is an indentation at the top of my left breast, but it's hardly noticeable, healed well and my skin tolerated rads well. So for me, the lumpectomy was the best choice. I also had chemo and am now on arimidex.





    I think it really depends on breast size and the location of your tumor(s), as well as the amount of tissue removed, as well as your tolerance level for multiple surgeries.

  • juneaubugg
    juneaubugg Member Posts: 951
    edited June 2012

    Thank you all. My NSUMX is scheduled for June 26th with TE. I will get silicone in both breasts when ready for the exchange. I am 100% sure thus is the best decision for me.

  • 25weeks
    25weeks Member Posts: 76
    edited June 2012

    Juneaubugg-  So glad you were able to come to a decision you are comfortable with.  For me, it was imperative that all of my questions were answered and that I had as much information as possible before making a decision.  Sounds like you were able to get to that place as well.  :)

    VickieDallas- Hang in there.  The first couple of weeks are a whirlwind of information, questions and tests.  I too wanted every bit of information I could get before making this decision.  Since I am only 40 with 2 young kids at home, I have a lot of living yet to do, and I decided I didn't want to spend my years constantly worried if 1) I had a recurrence, or 2) I had contralateral bc.  I found a wonderful team of doctors and decided to go the BMX route with reconstruction to implants.  My genetic test was negative, my Ki-67 was high as well, grade 2, 2 tumors in right breast close together (so multifocal) - my oncologist also said she strongly suspects chemo is in my future as well.  My PS emphasized that radiation plays a significant role in the reconstruction to implant procedure, so I hope that I can avoid rads.  Take a deep breath and know that the you'll make the right decision for you.

    Tricia

  • maltomlin
    maltomlin Member Posts: 343
    edited June 2012

    Hi

    I'm 4 years out from dx but had the same dilemma as you all. When I asked the surgeon what he would recommend if it was his wife, he said 'lumpectomy........ if it comes back it's another lump. If it's a mastectomy and it comes back, it's on the chest wall'. That decided me.

    OK the WLE has left me with a mangled boob, but it honestly doesn't bother me. When I'm dressed no-one would know.

    Good luck in your decisions. 

  • kyliet
    kyliet Member Posts: 687
    edited June 2012

    Hi, I had a lumpectomy for a supposedly small 1.3cm lump, because it was Grade 1 told there would only be radiation. Pathology came back after surgery with multi-focal and 3 lymph nodes positive and mod/high Ki-67. I have had chemo and am due for radio. I am scared that radio will affect any later decision to have an mx and recon, which I am seriously considering.

  • juneaubugg
    juneaubugg Member Posts: 951
    edited June 2012

    katopet:  That is why I decided to have the MX now instead of after rads.  Can you still just have the MX and skip the rads if you wanted to?

  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012
    I recently joined the chat boards I am 31 years old  and was diagnosed on May 24th 2012 with stage I invasive IDC. The lump measured 1.5 cm. I am not sure of the grade but I tested ER/PR+ with no family history and BRCA-.  When I met with the surgeon it seemed as though they were steering me in the direction of a lumpectomy, radiation and tamoxifen. However, she shared that the chance of recurrence after five years was between 7-10%. It scared me ( and my husband) to death that I more than likely would be diagnosed again during my lifetime. I decided to have a double mastectomy with reconstructive surgery - June 20th my surgery took place. During the surgery, and through the dye mapping lymph node test, the surgeon found macroscoptic cancer cells in one of my sentinel lymph nodes but no traces in any of the ten axillary lymph nodes that she removed. Because of this I will have undergo some kind of chemo treatment.

     I am a little over two weeks post surgery and feeling good. The pain has diminshed and now I feel sore. The emotional component comes in waves - sometimes I am happy and other times I feel sorry for myself and wonder why my body betrayed me. What I do know is in the end, I WILL be okay.

    After reading all of the posts on this board, I am glad to see that you have come to a decision that you are comfortable with. =)

  • juneaubugg
    juneaubugg Member Posts: 951
    edited July 2012

    Emilybrooke: I am ok with it and still in pain and sore from the damn drain! I only took the right one and fear one day I will be here again. Im only 44 and being er/pr+ helps me feel a tiny bit oh relief. Sounds like following surgery you totallyafe the right choice. My dr. (a woman by the way) laid out all my options and didn't make me feel pushed. It is such a hard and personal decision. Hardest one I ever made.

  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    It is by far the toughest decision in the world. I remember telling friends about my choice , most were shocked and said things like aren't you too young to do this? or shouldn't you take more times to think about other options? While my friends have been very supportive, lucky for them they've never had to make a choice like this, but they don't always "get" what this is like and how it makes you feel.

    Funny story - we were supposed to go on a cruise to Bermuda with my husband's parents, brothers and their girlfriends next week. Well up until last weekend, his parents still thought that we would be going. His father could not undertsand why I did not want to go on this vacation! I tried to explain that a) I didn't think being on a cruis ship with still healing incisions was a good idea b) I can't go swimming nor can I even imagine wearing a bathing suit c) clothing options? button downs are getting a bit tiring d) I am not comofrtable in my own skin right now!

    Sorry for the short vent, but it shows how some people just don't understand what we are going through.

  • GODISGOOD2012
    GODISGOOD2012 Member Posts: 63
    edited July 2012

    I had a bmx.  It was a tough decision, but several factors helped.  One factor was that I had dense breast tissue on the sides of both of my breast.  This tissue was so large that once removed it would have left me very deformed.  The bs also would not proceed without biopsying the other side in addition to the side that had the cancer. Anyway, knowing I had invasive and ductal cancer and this other info, my husband and I decided to make the decision.  I chose to have all removed and just have reconstruction. It gave me peace of mind and I knew this decision might prevent the need of radiation. I also was not staged until after the bmx.  I was told the lymph nodes play a major role in this process.  Thankfully, I had no lymph node involvement. I will have my exchange surgery in two weeks and I have regained my strength.  I have no regrets!

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