Lumpectomy vs. Mastectomy for the millionth time here....:)

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StFrancis
StFrancis Member Posts: 6
Lumpectomy vs. Mastectomy for the millionth time here....:)

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  • StFrancis
    StFrancis Member Posts: 6
    edited April 2015

    Hi - I've been reading through prior posts discussing this decision (there are a lot!) but everyone's case is unique. It's hard to get a clear picture.

    I was diagnosed with an IDC in my left breast at the beginning of March 2015 - the tumor is slightly over 1 cm. I am 44 years old with some very minor family history of BC. My doc ordered genetic testing done (b/c of my age) and all the major markers (BRCA1/BRCA2 and several others) were all negative.

    Standard protocol at this point seems to lumpectomy, then radiation, then possibly chemo, then hormonal therapy for a decade. HOWEVER, I am strongly considering a double mastectomy with autologous reconstruction at the same time. My "pros" for this are: 1) reduce the recurrence risk as much as possible 2) avoid radiation 3) I also have small, dense breasts that don't do mammos well 4) I'm about to lose my health insurance in August and kind of want to do as much as possible before that happens 5) I have a pretty easy summer ahead - there will never be a better time for me to recover from surgery given my work plans and 2 young children and 6) small breasts - taking out a lump bigger than 1cm plus margins is going to be disfiguring - I just don't think there's any way around it.

    Cons are obviously longer recovery time, scarring, etc.

    I'm glad of any advice or suggestions. I'm currently waiting on a referral from my general surgeon to a plastic surgeon.

    Thanks!

  • justmaximom15
    justmaximom15 Member Posts: 264
    edited April 2015

    All I know is that I was told having a mastectomy doesn't rule out radiation entirely. My breasts are larger so I'm actually having a reduction along with my lumpectomy. I think you just need to do what you feel is right for you.

  • Leighrh
    Leighrh Member Posts: 317
    edited April 2015

    This is def one of the hardest decisions.  I struggled with it too.  I ended up having the lumpectomy because I did not want the long down time.  It ended up being the best decision for me.  The only advice  I can offer is to go with your gut!  I had a pretty big section taken out but the plastic surgeon was there to fill in the hole.  I look exactly like I did before surgery.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2015

    Hi StFrancis,  I am copying over a post put together by Beesie, one of the resident experts on the boards. It gives a good, non-partial list of things to consider as you make your decisions:

    "Some time ago I put together a list of considerations for  someone who was making the surgical choice between a lumpectomy,  mastectomy and bilateral mastectomy.  I've posted this many times now  and have continued to refine it and add to it, thanks to great input  from many others.  Some women have gone through the list and decided to  have a lumpectomy, others have chosen a single mastectomy and others  have opted for a bilateral mastectomy. So the purpose is simply to help  women figure out what's right for them - both in the short term but more importantly, over the long term. 

    Before getting to that list, here is some research that  compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach.  If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research  has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the  breast cancer in the breast that affects survival, but it's the breast  cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of  surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't  affect survival rates.  Here are a few studies that compare the  different surgical approaches:

    Lumpectomy May Have Better Survival Than Mastectomy

    Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast  Cancer

    Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

    Now, on to my list of the considerations:

    • Do you want to avoid radiation? If your  cancer isn't near the chest wall and if your nodes are clear, then it  may be possible to avoid radiation if you have a mastectomy. This is a  big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of  invasive cancer is very large and/or if it turns out that you are node  positive (particularly several nodes).
    • Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or  beneficial for you to have chemo or take hormone therapy, it won't make  any difference if you have a lumpectomy or a mastectomy or a bilateral  mastectomy.  (Note that the exception is women with DCIS or  possibly very early Stage I invasive cancer, who may be able to avoid  Tamoxifen by having a mastectomy or a BMX.)
    • Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery.  After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
    • How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation,  particularly towards the end of your rads cycle. Most side effects go  away a few weeks after treatment ends but if you have other health  problems, particularly heart or lung problems, you may be at risk for  more serious side effects. This can be an important consideration and  should be discussed with your doctor.
    • Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is  usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the  reconstruction process but other women find the process to be very  difficult - there is no way to know until you are going through it.
    • If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have  complications. These may be short-term and/or fixable or they may be  long-term and difficult to fix. Common problems include ripples and  indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX).  If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret  the decision to remove your breasts or your healthy breast? Are you  prepared for the possibility of revision surgery?
    • How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love  their reconstructed breasts while some women hate them.  Most probably  fall in-between. Reconstructed breasts usually looks fine in clothing  but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction.  If you do  choose to have a MX or BMX, one option that will help you get a more  natural appearance is a nipple sparing mastectomy (NSM). Not all breast  surgeons are trained to do NSMs so your surgeon might not present this  option to you. Ask your surgeon about it if you are interested and if  he/she doesn't do nipple sparing mastectomies, it may be worth the  effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the  nipple).
    • If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your  body for the rest of your life and you have to be prepared for that.  Keep in mind as well that even if you have a nipple sparing mastectomy,  except in rare cases (and except with a new untested reconstruction  procedure) the most feeling that can be retained in your nipples is  about 20% - the nerves that affect 80% of nipple sensation are by  necessity cut during the surgery and cannot be reconnected. Any  breast/nipple feeling you regain will be surface feeling only (or  phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will  feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
    • If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source  of the cancer, but others become angry that cancer forced them to lose  their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this  diagnosis, and the fear, is well behind you.
    • If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed  when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in  order to avoid the anxiety of these checks. 
    • Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or  will the loss of your breast(s) be a constant reminder that you had  breast cancer?
    • Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk  level one that you can live with or one that scares you? Will you live  in constant fear or will you be comfortable that you've reduced your  risk sufficiently and not worry except when you have your 6 month or  annual screenings? If you'll always worry, then having a mastectomy  might be a better option; many women get peace of mind by having a  mastectomy.  But keep in mind that over time the fear will fade, and  that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence  even after a MX or BMX. Be aware too that while a mastectomy may  significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e.  mets).
    • Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the  contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer  (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level  from your oncologist. When you talk to your oncologist, determine if  BRCA genetic testing might be appropriate for you based on your family  history of cancer and/or your age and/or your ethnicity (those of  Ashkenazi Jewish descent are at higher risk). Those who are BRCA  positive are very high risk to get BC and for many women, a positive  BRCA test result is a compelling reason to have a bilateral mastectomy.  On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a  bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you  think, or much lower than you think (my risk was much less than I would  ever have thought).
    • How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you  get BC again, either a recurrence in the same breast or a new BC in  either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best  decision at the time with the information that you had?
    • How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made  the decision to have the bilateral? Or will you be satisfied that you  made the best decision with the information you had?

    .I hope that this helps. And remember.... this is your decision. How  someone else feels about it and the experience that someone else had  might be very different than how you will feel about it and the  experience that you will have.  So try to figure out what's best for  you, or at least, the option that you think you can live with most  easily, given all the risks associated with all of the options.  Good  luck with your decision!"


     

  • StFrancis
    StFrancis Member Posts: 6
    edited April 2015

    Thanks - I did see that list from Beesie. It's extremely helpful. And thanks for all the comments. I'm thinking I might get a second oncologist opinion as well. I like my doc, but he is awfully young. Part of me wants to see somebody more "seasoned" who's seen everything. I'm not sure if that makes sense, but it might make me feel better about my decision.

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

    Usually the order is surgery, chemo, radiation, then hormonal therapy.  Chemo needs to take place within a window of opportunity after surgery and weeks of radiation puts it outside that window.  Also, generally there are several weeks between each event - you have to heal from surgery before starting chemo, then recover from chemo before starting rads - often it is about 3-4 weeks between each.  If you are small breasted have you considered a bi-lateral mastectomy with immediate placement of implants?  It is known as a one-step direct to implant surgery and can eliminate the need for subsequent surgery that expanders to implants does, and also autologous (flap surgery) does.  Flap surgeries are often a multi-stage process with time gaps in between so if you are concerned about not being insured that may be a problem unless you do a simultaneous mastectomy/flap, but you are still likely to need additional surgery after that to fine tune.  Also, are you ER+?  If so, and you are also Her2-, you might want to have an Oncotype Dx test done to help determine the benefit chemo offers when added to hormonal therapy.

  • StFrancis
    StFrancis Member Posts: 6
    edited April 2015

    Thanks for all the advice....and I finally figured out I need to change my settings so the diagnosis stuff appears at the bottom of my posts!

    Yes, I will need to have oncotype testing and a sentinel node biopsy when the surgery happens to determine if I need chemo.

    I spent about 90 minutes yesterday consulting with the plastic surgeon about reconstruction options. I liked him quite a lot and he thought I was a good candidate for the PAP flap procedure if I choose BMX with immediate reconstruction. He said have enough tummy tissue to build one new breast (with the DIEP flap procedure) but not two. But....baby got back. ;) He could reconstruct both breasts with tissue from the back of the thighs/buttocks with the PAP procedure.

    I realize this seems a little extreme given my relatively "mild" BC diagnosis, but there are some pros to that decision to mean a lot to me. I think primarily, it will make me feel ACTIVE about this -- like I'm choosing to do something rather than having something done to me. I'm going to think on it for a bit, and get a second opinion from another oncologist about my overall treatment next week. I like my current doc, but he's awfully young. I'd like to hear from someone seasoned who's seen everything.

    Also, I haven't seen too much info (or photos) about the PAP procedure since it seems relatively new. I am fortunate to have access to a PS experienced with it. If I do decide to go that route, I will do my best to share what I learn and find a way to share photos with anyone interested.

    Thanks again!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2015

    justmaximom....we have a lumpectomy/reduction thread in the surgery forum

  • knittingPT
    knittingPT Member Posts: 156
    edited April 2015

    Such a tough decision to make! I was advised to do chemotherapy first and I am so glad that I did. My tumor decreased in size by more than half, making lumpectomy not so disfiguring. Also it gave me time to read up on the literature. What I found in discussions with my docs and in my readings was that if I were to have a recurrence it would more likely be a metastasis to another part of my body rather than a recurrence in the treated breast or the other breast (I don't have any high risk genetics involved so this certainly isn't true for everyone). So, doing a mastectomy wouldn't gain me anything as far as "safety" or "risk" was concerned. The lumpectomy would be less invasive, less recovery time, and I could always do more surgery later, if needed. I also didn't want the decreased sensation/abnormal sensation on the chest wall that a mastectomy can cause. The post from Beesie really did help me think about the options as I was making my decision. Your insurance issues add another time sensitive component that I didn't have to deal with. Like everyone else said, you really do have to figure out what is the most important to you and trust your gut!!

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