Bilateral or Unilateral Mastectomy? Implant risks?

13

Comments

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Hope - There are a lot of us that have had BM's, so you are in good company. And there is a lot of information on what to pack and how to prepare. I found most of my information on the threads for the surgeries by month (I was a December surgery). Mostly I can tell you that it is not as bad as it seems as first, the surgery is doable. The first week it kind of tough. My PS recommends 8 weeks off, but some women return part time after 4 weeks. I don't believe I would have been able to return until 6 weeks - but my business requires a lot of travel. You should line up help for the first couple of weeks - cooking and cleaning and such, and driving you to MD appointments. Best wishes my dear! - Jean

  • ailenroc
    ailenroc Member Posts: 308
    edited March 2009

    Hi Tiffany,

    For some info regarding what to expect before and after the mastectomy, look in my post above, pages 2 and 3: I wrote a week by week list. Hope it is helpful. All the best for you.

  • tiffany851
    tiffany851 Member Posts: 3
    edited March 2009

    Hi everyone had my double mx on 3/12/09 and expanders I am really doing well just the normal pain. My nodes were clean and my dr. left me a message path report ...I do not need to go back for surgery I hear BUT call me in the morning at the office. Now I have a bit of panic what is the call me back going to tell me???? I have an appointment in the morning for my first follow-up could my ca be in other parts do I need chemo or....this is on my mind any ideas or should I just let it go?

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Tiffany - I will be thinking of you today. Please let us know as soon as you can what the doctor has to say. He could just be doing his job of following up. Take care. I hope you were able to get some rest last night. Thinking of yuo. - Jean

  • Caralee
    Caralee Member Posts: 5
    edited April 2009

    I would like to bring this post back up to the top of the list because this is my biggest question right now.  I was diagnosed with IDC March 10th.  Tumor is 1.5 cm with a 3 mm "satellite" right next to it.  My surgery is being scheduled, and I haven't made a decision yet about what to do exactly.  After meeting with both the PS and BS, lumpectomy for me is not an option.  I know I wouldn't be happy with the appearance afterwards.  My breasts are a small B, so compared to what I have, a significant amount of breast tissue would need to be removed.  I'm young, 35 in a couple weeks, and in good shape, so like to flaunt it every now and then.  Until a day or so ago, I figured I'd do a unilateral masectomy with immediate reconstruction, expander & implant (too thin to steal any tissue/muscle elsewhere).  The gummy implants are an option for me.  My concern now with only doing one side is achieving symmetry, and the feel with a heavier boob on one side.  Can anyone share their experience with this?  My mindset is starting to switch to a bilateral masectomy, for all the pros listed throughout this thread (and maybe even bump the size up a small bit with the implants while I'm at it).  Any thoughts/experiences would be greatly appreciated.  And, BTW...this is my first post.  Joined the site last night and I'm finding it very helpful!  Thank you, everyone!

  • PT63
    PT63 Member Posts: 329
    edited April 2009

    Caralee

    I had a bilat. mx. in December of 2006.  I chose the bilateral for some of the same reasons you are considering it.  I did not have enought extra tissue so my only option was implants.  I am currently looking to have my final tattoos this Thursday and I am very happy with the overall results. 

    Having said that and I am not trying to scare you, I will warn you that you may or may not get symmetry even with a bilateral.  Some of it depends on whether you will have to have radiation but there are other factors too.  My first PS was not very meticulous and the first reconstruction was incredibly assymetrical.  I was so disappointed.  I had a second reconstruction with a different plastic surgeon a year later and the difference was amazing.

    I like them now, but they are not the same as the originals.  I have no sensation over the breasts except deep pressure.  If you want to retain any sensation, you may want to keep one of your originals.

    I would also suggest taking photos prior to any surgery.  I did not do this and I often wish I would have.

    Take care and good luck with your decisions.

  • ailenroc
    ailenroc Member Posts: 308
    edited April 2009

    Caralee:

    I am glad to see that my original post is still helpful to others. I am now 9 months post-mx, 3 months post exchange, but pre-nipple.

    I still think that deciding whether to do a uni or bilateral is one of the worst parts of this whole experience. There is the pressure to do it right. If you do both there is no going back. If you do one, your risk of having at some point contralateral cancer is higher.  I was predominantly concerned about my health; I did consider symmetry but didn't make that the pivotal issue. Given that you have IDC, multifocal, and are young - bilateral seems like a very reasonable option (that was what made me decide on bilateral ... without knowing at the time I also had bilateral cancer.)

    As I have said above several times, I still have no regrets about the bilateral. That was for me the right choice. However, I would not recommend it based simply on hopes for better looks. I am not suggesting you are doing that, although that is certainly your prerogative. There are drawbacks to losing your natural breasts. Mine as of now, in comparison, to others I have seen, look reasonably fine (although I am not perfectly happy). In clothes with lots of cleavage, I look great! It is almost a joke. I turn heads. Naked, in dim light, nobody would have complaints either. I can't even complain about substantive numbness. I have sensation in all areas of my breasts, some more than others. No strange paresthesias (odd sensations, pains, phantom pains ... ). Just no nipple sensation anymore, of course. But that is actually not a big deal to me.

    The biggest drawback for me is that they just don't look like normal tissue ... to me. My husband is not complaining and he gets excited about my cleavage. However, for me, the softness and suppleness of the natural tissue is missing. Depending on how I move, the implants ripple. I find myself sometimes looking down another woman's blouse, not envious, but regretful that I have lost that natural look and feeling; breasts that were just there, no scars, no hassles, squeezable without concern for moving the implant around. 

    So there it is. As Guiliano said: "No reconstruction is like God made them."  I just don't want you or anyone to be seduced by the hope for looks. 

    The trouble is, of course, thanks to the damn cancer our breasts are now a hassle and the concern for our health continues.

    Some women really appreciate having one natural breast left. Others, like me, give up that look and feel in hopes of reducing their risk of recurrence, or to not have to deal with a potential second mastectomy down the road.  Everything I have read since, suggests that the risk for recurrence or contralateral disease is higher in proportion to the amount of breast tissue left. The less breast tissue left, the lower the risk.  No guarantees though. You could be one of the lucky ones who won't have either, recurrence or contralateral disease; or you could have a bilateral and still not be 100% safe. It is such a difficult decision to make.

    Think about how you would cope with a recurrence. Would you feel you had made the wrong decision the first time around?  For some, recurrence may be less of an issue than losing both breasts at once.

    Whatever your decision will be, do make your peace with it. It'll be the best you can make for yourself at this time. My very best wishes and a big hug for you.

    Cornelia


    Dx 5/30/2008, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2009

    Caralee,

    You mentioned that "My concern now with only doing one side is achieving symmetry".  IF this is really your strongest reason for considering having a bilateral, then don't have a bilateral.  A bilateral is absolutely not a guarantee of symmetry.  It's not even a guarantee that you will get better symmetry than if you have a unilateral mastectomy. There is so much that a good PS can do to achieve symmetry between one natural breast and one reconstructed breast.  On the other hand, if you have a bilateral, you have to consider that each breast is completely separate from the other and each side may react differently to the surgery.  The muscle on one side might be tighter than the muscle on the other side, resulting in differences in appearance.  The shape of your chest may be different on one side vs. the other, affecting how the implant sits and how the breast appears. One breast might settle and fall differently than the other.  So if your PS is saying that he or she can achieve better symmetry if you have a bilateral, the best thing to do is find another PS.   

    Also consider that although reconstruction will hopefully give you very nice looking breasts, these are not real breasts.  You will lose all nipple and breast sensation (you may regain some of the feeling on your skin but it won't be the same - remember that there is nothing inside the breast anymore except a silicone implant).  With implant reconstruction, you will lose the natural movement of your breast.  With implant reconstruction, the implant is put in below your muscle, so your pec muscle is moved to right behind your skin, making your muscle movements very noticeable.  This means that whenever you do anything strenuous that uses your pec muscle - open a heavy door, twist open a stuck jar, etc. - your breast will contort.  Many of us who have mastectomies have on-going muscle aches, phantom pains, phantom itching, etc..   Breast reconstruction can give you wonderful looking breasts, but it's not without side effects - it comes with a price.

    It also comes with a benefit, in terms of risk reduction and peace of mind.  If those are reasons why you might consider a bilateral, I wouldn't argue or disagree with that at all.  After a bout of BC, many women can only get peace of mind by having a bilateral.  For them, having a bilateral is the right thing to do.

    In my case, like you I needed to have a single mastectomy.  No choice about that.  After a benign biopsy & and clear MRI on my "good" side, I decided to go with a single mastectomy only.  I have a pretty high risk tolerance so I'm very comfortable living with my risk level to get BC again.  There's about a 20% chance that I will get a new breast cancer at some point in the future, but if I do, I will deal with it then. It might not happen for 10, 20, or even 30 years.  And there's an 80% chance that I won't ever get BC again (that's my risk level; you need to ask your oncologist about yours). So peace of mind was not an issue for me.  Instead, I just didn't want to completely lose all my breast and nipple sensation.  And, knowing that reconstruction often comes with complications and unexpected difficulties, I just had a gut feeling that I didn't want to have to deal with that on both sides.  Three years later, I'm very happy with my decision.  I was a large "A"/small "B" before surgery, and by adding an implant to my "good" side, I'm now a full "B".  I have very good symmetry, I look better proportioned in clothes and I have cleavage (just a bit!) that I never had before.  I don't notice any difference in weight between my breasts.  Certainly there is a difference in feel & movement - my natural breast is nice & squishy and moves naturally whereas my reconstructed breast is quite firm and pretty much doesn't move at all - but in a bra, I don't notice those differences at all. 

    I'm not saying that a single mastectomy is a better choice.  It was the right choice for me.  You need to figure out what the right choice is for you.  Consider all the pros and cons of keeping one natural breast vs. having a bilateral:  What is your risk level to get BC again and how comfortably you can live with that risk?  Will you always be waiting for the other shoe to drop or will you be able to move on without fear?  How will you feel if you have a single mastectomy but then get BC in your remaining breast at some point in the future?  How will you feel if you have a bilateral and the pathology of your "good" breast is completely clean with no sign of any potential problem or if you have reconstruction complications on the "good" side?

    Only you know what the right decision is for you.  There are lots of reasons to have a bilateral and lots of good reasons to have a single mastectomy.  But please, don't have a bilateral simply because of symmetry.

  • Caralee
    Caralee Member Posts: 5
    edited April 2009

    Beesie, Cornelia, and PT63 - thank you so much for sharing your thoughts and experiences.  You were all very helpful.  I am meeting with my PS at the Cleveland Clinic in a week and a half, as well as another PS there that came highly recommended.  Then, it's decision time.  Wish me luck! 

    Cornelia - I'm curious.  How did you access your recurrence risk before surgery?  Wouldn't it change significantly depending on if it's in the nodes or not?

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2009

    Caralee,

    I'm sure that Cornelia will be by soon to answer your question, but in the meantime I can provide a bit of info.  When you consider recurrence risk, there are two different risks to consider: 

    • First is local recurrence, a recurrence in the area of the breast.  Often local recurrence risk will be quite low after a mastectomy, possibly as low as 1% - 2%.  Most (but not all) of the breast tissue is removed, so there's only a small chance that there can be a recurrence in the breast.  If you have invasive cancer right up against the skin or the chest wall, your risk may be higher, but in that case, you are likely to be given radiation (even after a mastectomy).  Nodal status is unlikely to significantly change the risk of local recurrence; cancer cells that move into the nodes are moving out and away from the breast, so having a positive node may not increase your likelihood of recurrence within the breast area.
    • Where nodal status comes into play is when you consider the second type of recurrence, a distant recurrence.  Distant recurrence is one that occurs outside of the breast; this is also called metastisis.  Having a mastectomy has no impact on distant recurrence risk.  If a few cancer cells have already moved into your nodes prior to surgery, it really doesn't matter if you then remove all the breast tissue.  The distant recurrence risk doesn't change. 

    Other than recurrence risk, there is a third risk that also is a consideration when making the bilateral vs. unilateral mastectomy decision.  This is the risk that you may get a new primary breast cancer, a cancer that is totally separate from your original cancer.  This new cancer might be in the same breast or it might be in the contralateral breast.  The general rule of thumb that my oncologist told me is that once you've been diagnosed with BC one time, your risk to get BC again is about double the average, based on your age and also with consideration to any other risk factors that you may have.  For me, this is the 20% risk that I referenced in my earlier post; 20% is considered "high risk" but it's a level that I can live with and that's why I decided to have a single mastectomy.  Your oncologist should be able to tell you what your risk is.  If you have a mastectomy, in most cases you can reduce this risk to about 1% - 2%. 

    Hope that helps!  And good luck with your appointments with the plastic surgeons.

  • Caralee
    Caralee Member Posts: 5
    edited April 2009

    Hi Beesie - Thank you so much for the clear explanations about recurrence risk.  Very helpful!   

  • ailenroc
    ailenroc Member Posts: 308
    edited April 2009

    Caralee,

     Sorry I could not respond sooner to your question. I hope my answer is still helpful:

    I have some data and resources to this question posted in the pages above:

    see the table regarding pros and cons - first page and the conversation with John Link (onc):  Mastectomy reduces your breast tissue to about 1-2%. If in the general population, one has a lifetime risk of about 12% than that leaves after mx about 1-2% of that 12% ... that leaves a remaining risk that is very small, if there was no invasion yet.

    However, the risk of recurrence or contralateral disease is greater for women who already were diagnosed with the disease. As a quick rule of thumb one can say that the risk doubles. So, instead of having a 12% lifetime risk, an already diagnosed person has approximately a risk of 24%. Different studies / sources give different estimates. The actual risk varies for each individual with the type of cancer (aggressive or not); whether it was invasive and had spread to the lymphnodes; the presence or absence of other risk factors (e.g., obesity, atypical hyperplasia, alcohol consume, hormone levels, prior hormone treatment, genetic disposition, etc).

    Although my own risk was assessed to be quite low, given my history, I did chose a prophylactic mastectomy on the left. Given that I had none of the known risk factors and zero family history, I just instinctively thought, in light of the fact that I had already developed cancer, that I would be at a substantive (for me) risk for further disease. So I sought to minimize that risk by minimizing the breast tissue. And, unfortunately, my intuition was right on: the left did have cancer too although my risk of contralateral disease was very small.

    Below some resources on the topic.

    Risk to the other breast - Contralateral disease

    In general, according to the study, women diagnosed with breast cancer in one breast have three to four times the risk of developing a new cancer in the other breast.

    Much of this increased risk has been attributed to genetic predisposition, hormonal risk factors and other common causes. But there remains the possibility that treatment regimens for the first breast cancer, including chemotherapy and radiation, might also play a part.

    http://www.medicinenet.com/script/main/art.asp?articlekey=93419

    http://www.cancer.gov/newscenter/pressreleases/MRIContralateralRelease

    "One in ten women diagnosed with cancer in one breast will develop the disease in the opposite breast. Having a better technique to find these cancers as early as possible will increase the chances of successful treatment," said NIH Director Elias A. Zerhouni, M.D.

    As many as 10% of women with breast cancer develop a new tumor in the opposite breast, even though nothing is found when they are checked with mammograms and physical exams at the time of their original diagnosis. Finding these cancers earlier could help women make treatment decisions (some women with cancer in just one breast opt to have both breasts removed as a precaution), and might spare them from extra rounds of surgery and chemotherapy later.

    Researchers from the University of Washington Medical Center in Seattle studied 969 newly diagnosed breast cancer patients to see if MRIs could find contralateral cancers that mammograms and physical exams missed. The scans found 30 early-stage tumors the other tests could not detect, and missed only 3.

    "This study gives us a clearer indication that if an MRI of the opposite breast is negative, women diagnosed with cancer in only one breast can more confidently opt against having a double (or bilateral) mastectomy," says John E. Niederhuber, MD, director of the National Cancer Institute, which sponsored the study.

    Also look at:   Adjuvantonline.com

    The http://www.adjuvantonline.com/index.jsp website:  offers a software program that allows you to enter your tumor characteristics and receive an immediate prognosis (relapse rates) based on a large data base; it is commonly used by oncologists in their decision-making about your treatment.

    you need to register (it is free) to access the data base

    The purpose of Adjuvant is to help health professionals and patients with early cancer discuss the risks and benefits of getting additional therapy (adjuvant therapy: usually chemotherapy, hormone therapy, or both) after surgery.

    The goal is to help health professionals make estimates of the risk of negative outcome (cancer related mortality or relapse) without systemic adjuvant therapy, estimates of the reduction of these risks afforded by therapy, and risks of side effects of the therapy. These estimates are based on information entered about individual patients and their tumors (for example, patient age, tumor size, nodal involvement, histologic grade, etc.) These estimates are then provided on printed sheets in simple graphical and text formats to be used in consultations.

  • ailenroc
    ailenroc Member Posts: 308
    edited July 2009
  • JulieL
    JulieL Member Posts: 57
    edited August 2009

    I have read through this entire post and am so happy to see that you saw John Link. I am seeing him on August 25th as a followup but will be seen by my surgical oncologist, Dr. Cullinane, for long term followup. I have been so fortunate to have such great doctors through this whole process. I am very interested in what Dr. Link has to say and I have many questions for him about estrogen and progesterone. Good luck to everyone. We will get through this together. These posts are so informative and calming. I had bilateral mastectomy because it was right for me. I had extensive DCIS on MRI so I opted for bilateral. I had implants before so I didn't need expanders. I had surgery on August 11th and it pretty much is following what your process was. Thanks for the help so now I know what to look forward to in the next couple of weeks. Love the outcome so far.

  • ailenroc
    ailenroc Member Posts: 308
    edited August 2009

    Julie,

    I'm glad I could be of help and that you are happy with the result. John Link was the most knowledgeable person I talked to in the entire year. He patiently answered every question, so make sure to bring a thorough list. Have you read his books? That helped me to formulate some more detailed questions.

    All the best for you.

    C

  • JulieL
    JulieL Member Posts: 57
    edited August 2009

    C,

    I have read his book Breast Cancer Survival Manual. I have all of my imaging studies at the breast center in Long Beach and they gave me two of his books and a recipe book on foods for cancer patients. I read the Survival Manual before surgery so that I would be prepared and know what they were talking about after surgery. It was very informative. I was told not to read the second book until after surgery unless I needed it. I have started a list already. I hope he set aside an hour for me. I was assured by my surgical oncologist that I was done with treatment but I think that I want some testing done to see if my daughter should be tested. There is no breast cancer in our family but the way I feel is that it has to start somewhere. What were some of the questions that you asked about testing and treatment?

    Julie

  • ailenroc
    ailenroc Member Posts: 308
    edited August 2009

    Julie,

    It sounds like you are well prepared after all your reading. Our situations are different; so I don't know if any of my questions are relevant for your situation. In general, I discussed my prognosis and future risk; necessity of further testing and treatment (Tamoxifen; chemo). Also, he seems to be more up on nutrition than any one else I have talked to: role of phytoestrogens in various foods (e.g., soy, flax) ... should I avoid or eat (I'm 100% ER+) ...

    The bottom line from our discussion was that he thought "You're cured" As surprising as it was to hear that so assertively, he did reason the whole thing through with me taking an hour+ and what he said made sense. ... I sure hope he is right.

    Regarding BRCA: in case you are considering that: insurances tend to only pay if you have two or more family members with bc or ovarian cancer -- see if there are any in your immediate family.

  • JulieL
    JulieL Member Posts: 57
    edited August 2009

    ailenroc,

     I do have alot of questions about estrogen and progesterone and their roles in cancer. I was estrogene positive 20% and progesterone - for my DCIS. I guess my questions are going to be regarding any future cancers (i.e., ovarian) that I need to worry about even though I will always worry after this breast cancer and a melanoma in 2006. I want to solidify a plan of care for myself with all of my physicians regarding the melanoma, my ob/gyn, gastroenterologist, etc. so that I have a plan and can make a calendar. I guess it is my way of having at least a little control. Thanks for your advice. I will definitely be talking about nutrition as I am overweight and now know that nutrition is an important part of cancer prevention and care.

    I am so glad that he was so reassuring about your cure. It must have been so great to hear it from someone as knowledgeable as him. I don't have anyone in my immediate family that have had breast cancer or ovarian cancer but I will be sure to call my insurance and inquire about it.

    Thanks for everything. You have been very helpful. 

    Julie

  • ailenroc
    ailenroc Member Posts: 308
    edited August 2009

    Julie,

    Let me know how your visit with Dr. Link went; did you get your questions answered?

  • JulieL
    JulieL Member Posts: 57
    edited September 2009

    Hi ailenroc,

    I did have my visit with Dr. Link and it was great. We talked alot about nutrition (as you said) and what my followup should be with my other physicians. The great thing about it is that he knows all of my physicians and they know him so everyone will be in agreement with the plan. He feels that I should have a pap and ultrasound of the ovaries every six months and a colonoscopy every 5 years. Even though I am only 46 I did have a colonoscopy 5 years ago because my father died at age 48 of colon cancer. I am due in January. He did feel that I made the right decision about the double mastectomy and said that even though it was a difficult decision it was the best thing to do. Even after the mastectomy I still wondered if I had done the right thing but after speaking to him I haven't wondered about it it since. I did have to have a second surgery last Friday for a debridement on the breast that didn't have cancer. I think she is just rebelling because there was nothing wrong with her and she got the axe to. I am now looking forward to the nipple reconstruction in December. Dr. Link said that my plastic surgeon did an excellent job so I gave him his name in case any of his patients are looking. Hope all is well with you.

  • ailenroc
    ailenroc Member Posts: 308
    edited September 2009

    Julie: I am happy for you that it was a good experience. What did he have to say about nutrition: anything that would be useful for the rest of us? And, can you share who your ps was? I have an aquaintance who needs one but can't take mine because he does not take insurance.

  • JulieL
    JulieL Member Posts: 57
    edited September 2009

    Ailenroc,

    He talked mostly about supplements. He said to take calcium 1200 mg per day, a multi-vitamin (Centrum) 1 per day, flaxseed oil - follow the directions - mine says take two per day, and to keep my appointments for followup for bloodwork, ovaries and colonscopy. He also said to omit hormones. Eat organic meat and chicken. Eat lots of vegetables and fruit and exercise regularly.

    My plastic surgeon is Dr. Farbod Esmailian. He has an office in Los Alamitos and in Glendale. He does his surgeries at six different places and his office in Los Alamitos is right across the street from Los Alamitos hospital. He has an excellent bedside manner and has a great personality. What I like most about him is that he is a perfectionist and he talks to you the whole time he is looking at your breasts. I tend to ask alot of questions so that is probably why we talk so much. We have already discussed my surgery in December for the nipple reconstruction and I am already looking forward to it because he is going to take care of the "dogears" at the same time. I highly recommend him to anyone having reconstructive surgery. I had no idea what to expect to look like after all of this was over but he told me at my very first visit that my breasts were not going to look the same as my old ones and to prepare myself. Even though I don't have nipples right now I really like the shape and size that he gave me. They actually look better than the old set of implants that I had.

  • ailenroc
    ailenroc Member Posts: 308
    edited September 2009

    Thank you Julie for the info. The flaxseed info is so confusing; I know that some recommend, but others say to avoid. I'll re-read the issue. Did he say what blood tests to do: my onc is not in favor of any; cancer markers or even a CBC he thinks isnt' necessary. Glad you like your shape.

  • JulieL
    JulieL Member Posts: 57
    edited September 2009

    I have blood, LDH, for the melanoma I had three years ago and this is the same oncologist that I used then. Ive had bloodwork every 6 months just to make sure everything is ok. I spoke to my OB/Gyn today and he said that he would do the CA-125 once per year and we could do a PAP and ultrasound every six months. He said we would talk about the ultrasound and whether it can be done every year instead of every six months. When I have bloodwork I have the full blood panel with a liver and thyroid panel as well. I also have my cholesterol panel done since I have issues with that.  Dr. Link and my oncologist said that flaxseed is excellent for heart health and people with cancer. They felt it would also have an impact on my cholesterol numbers.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009
    Let's see if this works - BUMP...
  • ailenroc
    ailenroc Member Posts: 308
    edited November 2009

    Double: Thank you for the bump I am glad to see that the post is still useful to some.

     How uncanny.  I actually just thought I should update it with one major insight:

    For those who are in the decision-making phase: 'Lumpectomy or Mx; uni or bilateral' ... know I still have zero regrets about the bilateral mx, 1.5 years later. I am actually really grateful that I was brave enough back then in the initial confusion and horror to come to that decision.

    However, there is one thing I would do differently: I was offered a nipple sparing mx, but in my urge to purge all, I opted against it. Now, after my nipple recon, I would do otherwise. The nipple recon and tattooing really adds to the look of a normal breast and an overall sense of wholeness, and I would strongly recommend taking those steps.

    But even better, if you are a good candidate for just leaving your own nipples in place, do that! During the mx, the interior tissue will be biopsied for any evidence of disease and if there is none, it can safely stay. This would not apply to patients with Paget's disease.

    The nipple recon, etc just adds so much more hassle (although worthwhile once the nips are gone) that it is really worth to be a little more conservative upfront. That would have been the perfect balance for me: mx (over lumpectomy for sure) but keeping my own very cute nips. Because my breasts are well reconstructed, I don't really miss them. The nips I do miss; with them, I think it would be hard to tell now that I had a breast recon at all. And, very importantly, I do have mostly normal sensation in my breasts; I have a bit leftover areola which has normal sensation and I think that there is a good chance that I would have had some sensation in my own nips too.

    Moral of the story: be thorough but not overzealous.

  • Faith316
    Faith316 Member Posts: 2,431
    edited January 2010

    Bumping this thread back up.  Lots of good info.

  • flowerpetal
    flowerpetal Member Posts: 35
    edited January 2010

    fyi..

    New Breast Cancer Guidelines Released (October 2009)
     
    NCCN panel adjusts recommendations for prophylactic mastectomy, chemotherapy and lymph node testing

    By Mary Alice Hartsock, LBBC Staff; Reviewed by Lisa Jablon, MD

    National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology for Breast Cancer. nccn.org. October 2009.

    Prophylactic mastectomy is recommended only for women at high risk for developing breast cancer, according to new guidelines released by the National Comprehensive Cancer Network. The guidelines also adjust recommendations for lymph node testing and invasive breast cancer chemotherapy. The guidelines were developed by physicians with expertise in breast cancer prevention, diagnosis, treatment and recovery.

    Prophylactic Mastectomy Guidelines

    More and more women have a prophylactic mastectomy, the removal of the opposite, noncancerous breast, because they feel doing so could prevent a new cancer from forming there.

    The new guidelines state that prophylactic mastectomy is discouraged if you have cancer in your other breast and no other risk factors. Women with BRCA mutations or a family history of breast and/or ovarian cancer and women who have lobular carcinoma in situ (LCIS), a condition in which breast cancer is present in the lobules of the breast, are still considered candidates for prophylactic surgery, because they are at higher risk for developing cancer in the opposite breast.

    In considering prophylactic mastectomy, the guidelines encourage you and your doctors to discuss:

    • The small benefits of prophylactic mastectomy compared to the risk of breast cancer recurrence from the cancer that already was found
    • The emotional and practical concerns of bilateral mastectomy
    • The overall health risks of contralateral mastectomy
     

    Lymph Node Testing
    The guidelines also remove the recommendation for a full axillary lymph node dissection (ALND), or the surgical removal of all lymph nodes in the underarm, for women with stage I or II breast cancer whose lymph nodes are not swollen during physical exam.
    These women should have sentinel node mapping and excision by a team of physicians with experience in sentinel node biopsy, the new guidelines say. Sentinel node mapping and excision involve testing and removing one or a few lymph nodes. Compared to ALND, this procedure may decrease the risk of post-surgical pain and lymphedema, when lymph fluid builds up in the arm causing chronic swelling.
     
    http://www.lbbc.org/content/news/new-breast-cancer-guidelines-released.asp?section_tag=G
  • ailenroc
    ailenroc Member Posts: 308
    edited March 2010

    bump for Patty

  • ailenroc
    ailenroc Member Posts: 308
    edited May 2010

    I am not quite sure where to post it but wanted to share the info before dashing off to work:

    New report at http://www.reuters.com/article/idUSTRE6450LN20100506

    Americans are being "bombarded" with chemicals, gases and radiation that can cause cancer, and the federal government must do far more to protect them, presidential cancer advisers said on Thursday.

    ... in case you ever wondered why you got the damned disease.

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