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lawks
lawks Member Posts: 3

hello,

New to the board.  I have been seen by a breast surgeon due to multiple cysts in my breast.  I went in to have something checked out that seemed different, and while that checked out ok the ultrasound identified another area of suspicion.  A core bioposy was done, when came back as Stage O, non-invasive, DCIS aroun 2cm, low grade.  Had another mammogram ordered which came back identical to previous mammograms and did not show the DCIS that they had diagnosed.  Then went in to talk to dr about options, and she did a ultrasound to be sure that she would find the DCIS.  While doing that she identified another suspicious area in another quadrant of the same breast.  So she orders a MRI. Good results prior to follow up apt with dr.  The new suspicious area was benign, however they discovered another suspicious area close to the first DCIS, around 1.5 cm that did not display as brightly as the original DCIS, but is stil there.  Have an appt next week to talk about this and option.  

Although I know others have much worse diagnosis, it just seems that they keep finding things that don't show on mammogram, and are suspicious.  I'm upset about this and nervous, and am just looking for some encouragement and maybe someone else that had this experience.  I am leaning towards getting a masectomy since I have so may other cysts in my breast (the other breast has not cysts and the MRI showed nothing in that breast).  Does anyone have any advice or thoughts.  Second opinion?  get a biopsy on the second suspicious area?   Both are in the lower right-side quadrant of my left breast.  Thank you.

Comments

  • kittymama
    kittymama Member Posts: 139
    edited November 2010

    I can totally empathize with you!!  The testing and waiting is nerve-wracking.  I asked my PCP for Ativan, which so far has worked well.

    I'm a little confused.  Your post states that you are leaning towards getting a mammogram, but it also states that you already had a mammogram.  Maybe I'm misinterpreting.

    Anyway, I would get a biopsy on the suspicious area that appears on the MRI.  Maybe your doctors will be able to see the other suspicious area on ultrasound now that they know where to look.

    My heart goes out to you.  Let us know how it goes.

  • lawks
    lawks Member Posts: 3
    edited November 2010

    sorry, I'm leaning towards a masectomy because of all the cysts. :)

  • kittymama
    kittymama Member Posts: 139
    edited November 2010

    Oh wow, now I totally know how you feel.  I'm leaning towards one, too for similar reasons.  Hopefully, someone with a cooler head will pop in and post reasons against a mastectomy.  For both our sakes.  Hugs to you!

  • lawks
    lawks Member Posts: 3
    edited November 2010

    thank you....same to you!

  • CandDsMom
    CandDsMom Member Posts: 387
    edited November 2010

    Hi Lawks- I had a similar circumstance - I had 2 small areas of 3mm and 7mm microcyst clusters that were found on routine screening exam.  I got BIRADS-3 label but insisted on biopsy that showed grade 2-3 cribriform DCIS with necrosis.  Then I got an MRI that showed an additional 9x8x5 cm area in the same breast that was also full of little spots of DCIS all less than 1cm.  For my 2 cents I would definitely at least get an MRI biopsy on the sites that were found.  It is good to get more data points to at least then figure out what your options are.  I ended up having to get a mastectomy (on the right at least due to multifocal disease) which was a decision I never wanted to make but I have no regrets now and am glad to have it out.  Good luck with everything and keep us posted!

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited November 2010

    I, too, have opted for a mastectomy due to diagnostic difficulties and fears from dense, fibrocystic breasts.   My mammo never found my cancer, it's a good thing the skin started dimpling so I noticed it.   I don't have much faith in most diagnostics, even MRI's, since things get complicated once you've had surgeries and biopsies - just makes it harder and can mask an underlying tumor.   NOT saying that will happen to you, just food for thought in making your decision.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    "Hopefully, someone with a cooler head will pop in and post reasons against a mastectomy.  For both our sakes."

    It's actually not a question of reasons for or against having a mastectomy.  It's a question of understanding what a mastectomy involves, both in the short term and over the long term - and understanding what a lumpectomy involves, both in the short term and over the long term.  You need to have a clear picture of the pros and cons of each approach. Then you need to make the decision that is right for you. This is a huge life-changing decision, and there are so many factors to consider with so many implications, whichever direction you go. I find it very concerning when someone on this board suggests to someone else what they should do ("I think you should have the ....").  The fact is that no one can know, or should ever suggest, what someone else should do. We all look at things differently.  We are affected differently. And if the diagnoses are different, the factors that need to be considered may be different too. The simple fact is that what's right for one woman might be cause terrible emotional distress for another woman. 

    What I have done in the past is provide a list of questions/factors that you should consider as you make the lumpectomy vs. mastectomy vs. bilateral mastectomy decision.  I'm sure that this isn't a complete list, but it's a good start.

    • 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 it's discovered that you have invasive cancer in addition to the DCIS and the area of invasive cancer is very large and/or if it turns out that you are node positive.  Keep in mind as well that sometimes women who have lumpectomies for DCIS (particularly smaller amounts or lower grade) may be able to avoid radiation if they have large post-lumpectomy margins (10mm+).
    • Do you want to avoid hormone therapy? If you are ER positive, you are almost certain to be prescribed Tamoxifen if you have a lumpectomy. Tamoxifen may be recommended if you have a single mastectomy but it will be optional (the benefit will be protection of your remaining breast). Tamoxifen will not be necessary if you have a bilateral mastectomy, assuming that your final diagnosis remains pure DCIS (i.e. with no invasive cancer). Tamoxifen reduces the risk of distant recurrence (i.e. mets) in addition to lowering the risk of local recurrence which is why it is often still recommended for those who have invasive cancer, even if they have a bilateral mastectomy.  But distant recurrence is not a concern for those who have pure DCIS; only local recurrence is a concern.
    • 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 do you feel about going through a longer surgery and a longer, more restricted recovery period?
    • Do you plan to have reconstruction?  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. Are you prepared for this?
    • 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 don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy and have 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? 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.
    • How do you feel about losing the natural feeling in your breast and your nipple?  Are your nipples important to you sexually?  A mastectomy will change your body for the rest of your life.  Are you 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); 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's a huge negative.
    • 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.  As you read this board, something that's very important to keep in mind is that almost all women are thrilled with their decision to have a mastectomy or bilateral when it's first done - they are relieved that the cancer is gone and the surgery is over and in most cases it wasn't as bad as they feared.  The real impact of the loss of our breasts doesn't hit most of us until months or even years later.  
    • 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 satisfied that you've reduced your risk sufficiently and not worry about it except when you have your 6 mth or annual screenings?  If you will always worry, then having a mastectomy might be a better option.  Be aware however that a mastectomy doesn't totally eliminate your risk of local recurrence (i.e. in the breast area) and, should any invasive cancer be discovered, a mastectomy has no impact whatsoever on your risk of distant recurrence (i.e. mets).  Keep in mind too that worriers are worriers.  I've noticed that some of the women here who worry the most are those who've had bilaterals.  They had the surgery to reduce their worry but someone who is prone to worry is going to find something to worry about and the fact is that after a breast cancer diagnosis, there always is something to worry about. 
    • 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 does not recur in the contralateral breast so your current diagnosis does not affect your other breast.  However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again and this may be compounded if you have other risk factors.  But do yourself a favor and find out your risk from your oncologist - don't assume that you know what it is (mine is high but it's much less than I ever would have thought). 
    • How will you feel if you have a lumpectomy 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?

    As you can see, there are a lot of considerations. In the end, only you can know what's right for you to do.  In my case, I had too much DCIS in a small breast so I had no choice but to have a mastectomy.  If I'd had a choice, I would have opted for a lumpectomy plus radiation - because I believe that it's less life-changing.  My pre-surgery MRI showed no concerns in my other breast so I decided to have a single mastectomy only.  That was 5 years ago and I'm happy with that decision.  And although my surgery and reconstruction (implant) was virtually painless and my cosmetic results are quite good, I am grateful that I only have to deal with mastectomy/ reconstruction issues on one side.  A mastectomy is a life-long change that impacts me pretty much every day, with muscle tightness, numbness, phantom itching and small things like that.  There's nothing that's unmanageable or that makes my life difficult, but it's a constant reminder that I've had breast cancer and have been impacted by it forever. Not that I would ever forget that I had BC, but it's a daily reminder that I would rather not have.

    There are others who view it very differently. There are women who, despite having reconstruction issues, are grateful everyday for their decision to have a bilateral.  And there are women who have lumpectomies and live happily with that decision.  No choice is wrong, but only you can know which choice is right for you.  

  • Ndwmel
    Ndwmel Member Posts: 21
    edited November 2010

    I too have no faith in Mamagrams, I went for my first one 2008 & 2009 due to soreness in my breast, they told me it was too much caffeine, then when I went in Feb  2010 of  THIS year with nipple discharge, they still sent the generic letter stating I am all good, see me next year.  REALLY?   I had a masectomy on 10/21, and only because I changed breast centers,  Mammagram, ultra sound, needle biopsie (ok they tried for 1hr) then the MRI, which they say was a blessing,  the nipple biopsie would NOT have reveled the 11.2CM of DCIS,  found on the MRI along with a .6mm malignet tumor.    I was told the anything under 5cm of DCIS could be considered for a lumpectomy, I even elected to have the entire 11.2 cm biopsied during another MRI just to confirm, unfortunately it was entirely DCIS, and confirmed after my removal.  I wish both of you the best of luck, you have found a great sounding board, I am new here myself, and am Thankful to have so many knowledge women to ask questions.

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