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Jamie's Blog

Friday, July 10, 2009

Elective mastectomy—what I wish my doctor had told me.

The diagnosis of breast cancer brings with it an avalanche of decisions, and one of the most difficult is whether or not to remove the unaffected breast. Our hope is that getting rid of the breast will protect us from recurrence, and with advancements in reconstruction, we can look forward to perky, cancer-free breasts. Good as new.

Right?

Not really.

No one cautioned me about the impact of nipple amputation on my sex life. No one even mentioned sexual function in any way. I know, it should be obvious that no nipple equals no pleasure. But such obvious things are exactly the kinds of things that don't occur to us when we are scared to death of dying.

When men have prostate cancer the top question they ask is, you guessed it, "Will I retain sexual function?" And a huge percentage of men opt for the less invasive, more risky, treatment in order to preserve quality of life. Why is sexual function not considered an important issue when choosing breast cancer treatment, particularly elective mastectomy?

It never occurred to me, and no one warned me. In all of my research I have never found a woman who was told about the cost of nipple amputation. Some women say, "I wouldn't miss it. I haven't felt my nipples since I breast fed." Others say, "It would be a devastating loss." The point is informed consent-- hear the pros and cons, and make the choice you can live with.

Of the dozens of women with whom I have spoken since my surgery, only one said that someone brought up this issue with her prior to surgery. That is unconscionable, so I make sure to explore the subject with women who contact me. I want to be part of the solution, not just complain about the problem.

I wish someone had done so for me.


For more information about surgical options visit this site~ http://www.sanfranciscodiep.com/reconstruction.html

26 comments:

  1. this is a great post. i am preparing for my reconstructive surgery and am still contemplating the elective removal of my unaffected breast. you're absolutely right in that no one mentions the sexual function that you lose with the loss of the nipple. (sigh) with the numbers of women aflicted with breast cancer, you would really think that the emotional aspect of treatment would be better handled. at any rate, thank you for this post. it is definitely good food for thought.

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  2. Great post, Jamie. It behoves us to remember that what is important to the patient may be widely different from what is important to the surgeon.

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  3. I agree with you that preservation of sexual function is a topic that deserves *much* more attention in women's healthcare. When I had a partial hysterectomy to correct painful intercourse, I researched nerve-sparing technique because I was determined to not go from painful intercourse to numb intercourse. While interviewing potential doctors, I was amazed at the response of physicians who wondered why I didn't want to have a vaginal hysterectomy. The research I did showed that vaginal incisions are convenient for the surgeon but higher risk for the woman's sexual function. One doctor actually said, "why are you worried about nerve-sparing technique?" I looked him right in the eye and said, "Well if my husband's going to make love to me, I'd like to feel it."

    I'm happy to report that 5 years post-op, all my pistons fire. (grin)

    Passionate about women embracing their healthy sexuality,
    Shula

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  4. Great website and posts, Jamie! I am the physical therapist who helped Jamie get back on track. I'm glad to see that Jamie is doing well and has stepped out to help others. I am also a breast cancer survivor. My treatments included a lumpectomy, chemo and radiation. Well...no one tells you of the problems associated after the care. Speaking of sexuality - did anyone tell you that vaginal stenosis and vaginal atrophy is one of the sideeffects from chemo? No one talks about it - not even my other physical therapist friends who treat breast cancer patients knew about it until I shared my thoughts with them! Where else do you have a person who's body part is amputated, recontructed, poisoned or burned and physical therapy is not the first line of care? We're making headways; but it's rather slow. Choose life and movement with me! Julie Wong, PT, CLT www.juliewongpt.com

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  5. THank you all for sharing. I have recently learned that I am BRCA2 positive and am considering a preventive double mastectomy. If anyone has gone through this and immediate reconstruction, I'd love to hear from you. Thanks!

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  6. Do you have any other risk factors besides the gene? Are the doctors recommending mastectomies? I would love to help you in any way I can. Please feel free to email me. I would be happy to speak by phone as well.
    Please write to me at jamie@stayinthepink.com
    Jamie

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  7. sorry for the delay, I have since seen the oncologist who does recommend the surgery.
    I'll consult with a surgeon on Jan 7th. No other risk factors, non-smoker, complete hysterectomy in 2004, normal mammograms all along. But with my chances between 53-98% that I will get breast cancer I can't see waiting for it.

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  8. Will you see a general or reconstructive surgeon? Be sure to ask about nipple sparing options IF you care about sexual function. Since this is elective there should be no problem saving your nipples, which can be the case if a tumor is close to a nipple.
    I have yet to hear of a surgeon who mentions sexual function during the consultation appointment.
    Also, please visit~
    http://www.breastrecon.com/index.html
    The Breast Reconstruction Guidebook is the Bible for women in your situation, and her website is interactive so you can get some help if you can't wait to buy the book.
    I would love to speak with you about this if you are interested. I look forward to hearing from you. jamie AT stayinthepink.com

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  9. I actually was warned by my oncologist about the impact of nipple removal on my sex life. I still decided for nipple removal as the cancer was close to the nipple. It's been only few months and I have other things to worry about. Sex is far from my mind at this point. Maybe it will hit me in the future..?

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  10. Dear Anonymous
    I am so glad to hear that your oncologist informed you about the impact of nipple removal. You do have other things on your mind now, and the impact on your sex life very well won't emerge until later. By the way, I agree that the location of the tumor is critical in making the decision about nipple removal. I wish you well, and look forward to hearing more from you. Take care.

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  11. I had the BRCA testing done, which revealed I was high risk. This came as no surprise since my sister was diagnosed this year at age 50. I am only 41. It has been recommended that I have my ovaries taken out and a double elective mastecomy. I am just very unsure at this point of what to do. My mammo this year revealed a spot that can not be seen on sonogram. I am being sent for aMRI with dye

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  12. Dear Anonymous
    I am so sorry to hear of your situation, and your sister's! This is such a radical option, to remove your ovaries so young, yet certainly if the MRI reveals cancer, then your risk of ovarian cancer increases sharply. I would love to call you if you would like to talk. Please keep me posted.
    Jamie

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  13. Hi, I haven't posted since September. I found out I'm BRCA2 positive and was very confused at first. Since then I've seen an oncologist and a breast surgeon. The oncologist recommended the bilateral mastectomy. The surgeon, surprisingly, did not recommend either way. I've decided to take tamoxifen for now while going through some talk therapy to figure out just what I want to do. I had a clean MRI done last month, yay! Thanks for being my sounding board, Jamie.
    Julie

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  14. great post. i kept the unaffected breast and had tram flap surgery for reconstruction...i was aware they were taking fat from me to build a breast with and it was grueling surgeryl...what i didn't know from anyone or from research is that not only do they take fat...they take stomach muscles. I can do all the situps I want but to no avail. they told me it was like a tummy tuck, it's not. i'd do it over again tho, it's great to have two breasts, but i would like to have been prepared and not shocked.

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  15. Dear Anonymous
    I am so sorry you were not well informed about the TRAM flap causing weakness in the abdominal wall. One of the reasons I am so active in breast cancer work is to improve the quality of preparation for patients facing mastectomy.
    It is too late for you to take a different path, but your comment here might help another woman make a truly informed decision. Thank you for sharing.

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  16. My 26 year old, married daughter, is considering elective mastectomy on both breasts. She has the BRCA 1 gene. My sister-in-law passed away in Jan.. (age 50) after a long battle with cancer that began when she was 33 yrs. old in her breast and eventually moved to her brain. My mother-in-law is a breast cancer survivor, however both her sister and her mother passed away with various forms of cancer. It is definitely in the family. My daughter has spoke to a breast surgeon and plastic surgeons. She seems to be mentally ready to make the decision. I am concerned if she is too young but would never want to see her go thru what my sister-in-law did. She is located near Dallas. Any thoughts or suggetions?

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  17. First let me say how sorry I am to hear of your family's cancer story. You have all suffered too much in every way! As for your daughter, has she had children yet? Has she heard of nipple-sparing mastectomy? This won't enable her to breast feed, but she might keep nerve sensation, which is a very important erogenous zone for many women. I would be happy to email and/or telephone for more details.
    Take care, Jamie

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  18. yes, she has decided to keep the nipples however is aware that this is taking a chance. Is the double mastectomy still the way you and most women would go? I realize it is a very personal and difficult decision. She does not have children but wishes to in the future. She is aware she will not be abel to breast fed and lose most sensation. In my sister-in-laws case - her pregnancy, brought her out of remission. I believe my daughter has asked if getting pregnant would increase her chances of cancer in the future and they have said no. I asked my OB/GYN and she felt that after having breast cancer my sister-in-law was taking a huge risk at getting pregnant. Any info to share?

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  19. Dear Anonymous
    Please forgive me for taking so long to reply. LIfe intervened!
    I don't have an answer for you regarding pregnancy and breast cancer risk, but I found a link where you could start your search.
    HEre you go:
    http://www.breastcancer.org/tips/fert_preg_adopt/bc_pregnancy/
    Keep in touch please!
    Jamie

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  20. Thank you Jamie. I will continue to research and pray. Please stay well. This is a great avenue for info and support. Appreciate your help.

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  21. Dear Anonymous
    I found more info for you on one of my community pages. Here is the link to the discussion I opened with your question. I hope this helps:
    http://www.medpedia.com/communities/3-Breast-Cancer/discussions/1074
    Jamie

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  22. Hello everyone, I just attended a conference in Orlando with the group called FORCE. see their website www.facingourrisk.org
    It was very informative but quite scientific. I met many women at different stages of their previvor/survivor journey. I am BRCA2 positive, doing surveillance for now. Good luck to us all! Julie

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  23. I am having prophylactic bilateral mastectomies next week.I am BRCA negative but my mother and sister died of breast cancer and my other sister is being treated for inflammatory breast cancer now.I feel I have no other options.I have had my family,I have breast fed my children.I have a much younger husband and I hate to lose my nipples.I have warned him about the changes my choice will have on our lives but he says he just wants me alive.I'm glad I found this site.I feel like I can talk to people facing the same choices.Thank-you for sharing.

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  24. Monica, thank you so much for sharing your story here. I can't tell you how sorry I am about the loss of your mom and sister.
    I would be happy to talk with you about your situation if you think it will help. Has anyone mentioned nipple sparing/skin sparing mastectomy? In some situations the nipple can be saved. Let me know if I can be of more help.
    Bless you!
    Jamie

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  25. Dear Julie
    I am so sorry to have taken so long to reply to your nice note from June!
    I never saw it until tonight. I am aware of FORCE as a wonderful organization doing great things in the fight against breast cancer.
    I hope you are well and thriving!
    Jamie

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  26. great and awesome blog...i am really impressed to see it...
    I recently see a site mybabydoc.com of an very experienced doctor name as DR Morice and specialized in woman issues like Tubal Reversal,Fertility treatment,Cosmetic Surgery,vaginal atrophy and much more like these..

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