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kruzin (@kruzin)

Mastectomy and breast reconstruction pros and cons?

Breast Cancer | Last Active: Jan 13 6:55pm | Replies (202)

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Hi I am debating nipple sparing double Mastectomy. How are you recovering are you happy with your decision almost a year and a half later? I loved all the points you made and I have similar thoughts and beliefs, I am 42 stage one IDC.

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Replies to "Hi I am debating nipple sparing double Mastectomy. How are you recovering are you happy with..."

Be sure to talk with your oncologist and surgeon regarding mastectomy versus lumpectomy for a Stage 1. I was ready to go with bilateral mastectomies for my Stage 2c infiltrating ductal ca and neuroendocrine ca (2nd tumor), but my surgeon mentioned minds are being changed now since even with full mastectomies, all breast tissue cannot be taken out completely and patients can still wind up with breast cancer. In addition, due to the amount of nerves being cut, sometimes women will have nerve pain for the rest of their lives (again, possibility). We went with partial mastectomies and I'm lucky that I've had some nerve pain but that has gone away. I'm not telling you any of this to frighten you, but just to advise you to look at all aspects prior to any surgery. It is a very personal choice and only you can make. By the way, my nipples came through find and the scars are starting to subside. All the best in your decision making and your future health.

Hi nataliehope, I am sorry I did not see this until now. I hope this is not too late to be of help.

As you know, I did have the nipple-sparing double mastectomy. I am now 25 months post-op and am still happy with my decision. I am alive and healthy and am glad to have passed the dreaded 2-year mark.
Re my recovery, I will share my journey and observations. (Caution: Long post ahead!)
1. From the beginning, both nipples retained sensation, which was a relief. They became blanched (pale) after the surgery due to some of the nerves and circulation being cut, and they have remained so since.

2. The implants put in were larger than my breasts before surgery. The reconstructive surgeon had asked me, "do you want to go smaller or larger?" I replied, "Well, not smaller, but maybe a little more perky?". She told me after the procedure in my follow-up that the team of doctors looked at the options (they bring 3 sets with them to surgery) and had voted on the best choice. I now have a D-cup. I had a C-cup before. The weight of the breast implants required that for at least the first 18 months I had to wear a bra, day or night or my breasts would ache from the pull on the tissue. Would it have been less if I hadn't gone bigger? I don't know. Now, I can go around bra-less at home and am fine. Sometimes though, I can feel that I need to put a bra back on for a bit. I was a curvy girl, so going smaller (or without breasts at all) would not have appealed to me or my husband I don't think.

3. The area from the nipples to the center of my chest never lost sensation, but from the nipple all the way around to the sides of my back and halfway down my stomach was numb for quite a while. Now, I have an area the size of my hand from my arm pits to my nipple on each side that is still numb. Everything else has gotten feeling back. This same area is cooler than the rest of the breast and stomach, but not enough to matter.

4. The genomics tests I had done had indicated that I would not be helped with radiation or chemotherapy. That was a relief as I really did not want either. I did have to go off my female hormone replacement therapy and that was difficult at first. I began getting hot flashes, started to lose hair around my front hairline and had other 'dry' issues. I also became ravenous and struggled with weight gain that would not come off. That has abated, somewhat.

5. Post surgery, I was grateful to have seen a very kind Integrative Medicine Doctor at Mayo who talked to me about 'why' I got cancer. I was a former athlete, non-smoker, non-drinker, health nut. He was very helpful. He mentioned that pain, sorrow, stress, and unhappiness will weaken the immune system. I had gone through some terrible years of stress and sorrow before my cancer diagnosis. He suggested that I protect myself and try and prevent a further occurrence of cancer. He directed me to get as thin as I could, healthfully. Fat holds inflammation. Stopping my replacement hormones stimulated my appetite. He told me my body wanted to build fat to replace the missing estrogen and that is why I was very hungry all the time. He said I had to fight it and lose any fat I had anyway.
He wanted me to do exercise and meditation. He gave me tapes to listen to. He recommended yoga, and other slow moving exercises like Qigong. He told me to remove or avoid individuals in my life who cause me grief or pain. He said to remove myself from a situation if I felt upset for any reason. I have done this. Even things like a violent movie or something on the news. I just get up and exit the room for a minute and take deep breaths. My family understands this.

6. My cancer was Stage III-A, invasive and in situ. My right breast had 3 fairly large tumors and one mass of unknown origin (??). Two lymph nodes tested positive and so the surgeon removed a whole line of them for good measure – 17 of them! So, my right arm sometimes aches and swells a bit if I am doing a lot of computer work or housecleaning. I just gently massage and elevate it and it is OK.

7. There are a number of non-FDA approved remedies coming to light that are in clinical studies for cancer eradication or prevention. I am a dedicated researcher and have read many studies. Many of these remedies are obtainable over the counter right now and for little cost. I take several of them along with many, many specific vitamins. So far, so good.

I hope you are well, and if there is anything else you can think of that I can answer, please let me know.
Good luck to you and all the other ladies out there!

As they say, "Where we go one, we go all!"