Please Read If You Are Considering a Preventative MX

FYI-  There are many NCI Cancer Centers offering nipple sparing so do not be mis-informed that they are not offering this procedure. I will be having a preventative NSM performed soon at an NCI Center. I am confident with my risk reduction being quite satisfactory with the cosmetic outcome outweighing the oncological risks. The chances of developing a carcinoma at the site of the NAC is extremely low, approximately 2-3% risk, acccording to most research. Nipple sparing can also be offered with ALL types of reconstruction, whether it be flaps, direct immediate implants or expanders. Much of the success of nipple sparing is due to the surgeon's experience/ technique,  using scalpel dissection AND placement of incisions. If any surgeon tells you many and/or most nipples become necrotic or lost with this procedure....FIND ANOTHER SURGEON. Surgeons who are against this procedure have no experience and minmal knowledge of the oncological safety. Women simply need to know all their options. Another important factor regarding frozen sections done intra-op during the procedure, all nipples are biopsied during surgery , but frozen sections are not completely reliable and a real biopsy requires a full comprehensive pathology report. Many surgeons do not perform frozen sections for this reason and will remove any nipples AFTER a full pathology is completed. This usually means another surgery a week or later after the mastectomy, but this is extremely RARE!! One top nipple sparing surgeon who has performed over 250 NSM's told me its happened  twice in his career.

Below are several great articles for those wanting to learn more information about the viability of nipple sparing option!!!

 http://www.diepflap.com/nipple_sparing_mastectomy.html

http://www.ncbi.nlm.nih.gov/pubmed/20101646?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed

http://www.ncbi.nlm.nih.gov/pubmed/19483564?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed

http://www.ncbi.nlm.nih.gov/pubmed/18923874?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

 from the Breast Preservation Foundation's website.

NSM & SSM :  What to Ask Your Surgeon(s)

Questions for Your General, Breast or Oncologic Surgeon & Plastic Surgeon

1. Where and when did you receive your general surgery training?
2. Are you board certified in general surgery?
   If not, why not?
3. Are you in good standing with the medical board?
4. How many mastectomies do you perform on a yearly basis?
5. What type and percentage of types of mastectomies do you perform most?
   (types are: lumpectomy, traditional mastectomies, and skin-sparing mastectomies)
6. Are you familiar with and do you perform skin-sparing mastectomies?
   If not, would you please recommend a general surgeon who is, for a second opinion?
   If yes, how many have you performed?
7. Is there any reason why I would not be a candidate?
   (The main reason would be that breast skin is invaded. Note that skin is not the same as breast tissue! Or if the breast cancer is at an advanced stage. Read inclusion and exclusion section.)
8. What will the scars on my breast look like?
9. Do you have photos of your mastectomies to show me?
   If not, please show me a medical journal photo that resembles your work.
10. EXACTLY what skin will be removed?
    (If it is most of the breast skin, then it is NOT skin-sparing!)
11. EXACTLY where will the scars be located?
    (You may want to ask your doctor to DRAW the scars with marker on your body.) With a skin-sparing mastectomy, the marks MUST be drawn in a KEYHOLE pattern, (i.e. under the breast fold, coming up to and around the nipple.) A traditional mastectomy will be one or two long incisions across the front of the breast, leaving little or no breast skin.)
12. Who will do the marking for the incision? You or the plastic surgeon?
13. Can the plastic or oncoplastic surgeon do the marking?
    If not, why not?
14. If not reconstructed at the time of mastectomy, then what communication are you, the general surgeon, going to have with the plastic surgeon about the incisions placement before the surgery so you have the best possible cosmetic result?
15. Am I a candidate for immediate reconstruction (at the time of mastectomy)?
    If not, why not?
16. If I have future reconstruction, will the surgery leave my breast skin so I can have a skin-sparing mastectomy?
17. What plastic surgeons do you work with?
18. Will the plastic surgeon do the pre-surgical marking and determine the location of the incisions?
19. Would you be willing to provide me with the name of another general surgeon for a second opinion?

Questions for the Plastic Surgeon

1. Ask the questions above, making the appropriate substitutions.
2. Do not be shy to ask to see photos of their work, and for the name of a second opinion.

Isla, I want to be sure I absolutely understood you correctly so myself and other women here are NOT mis-informed about the viability & safety of nipple sparing for certain candidates when they meet specific criteria. I do not believe you were ever a candidate for nipple sparing based on the preop findings/information you provided. As you mentioned, you had a diagnosis of MULTIFOCAL ILC in your left breast PRIOR to the mastectomy. Is this correct? If so, it is my understanding nipple sparing would not be a possible option for you with this diagnosis, especially given its multifocality which is also characteristic of ILC. This could have resulted in negligence just as your breast surgeon suggested. If indeed this is the case and Pagets Disease of the nipple were found incidentially during surgery, as you also mentioned, then your surgeons provided you with Standard of Care by the skin sparing mastectomy you were given based on your PRE-OP Diagnosis and POST-OP Diagnosis. Women who have other certain pre-op carcinoma findings are eligible for nipple sparing, but this would often NOT include the specific findings you had, unfortunately. The bottom line is knowing what may be oncologically safe for certain diagnosis's may NOT be safe for others to be included for a NSM. I just wanted to clarify this for others so they may seek this possible option if deemed safe by many oncological surgeons. Many small invasive ductal carcinomas located far enough away from the NAC could be quite eligible for NSM, but not many invasive lobular carcinomas, again just as you described. Thanks for sharing your story and glad you are doing well!!!

Kate33, I have found in another instance, with DIEP, that it seems like surgeons that do TRAM tend to promote TRAM and discourage against DIEP and since there are not a lot of surgeons that do DIEP, the information and recommendations for DIEP is not common.  Seems like this is the same with this line of surgery.