mastectomy

So sorry for your dx.

Just so you know -- sometimes the feeling does come back -- although they always warn you that it probably will not -- because the nerves are cut during the mastectomy. But the human body is pretty amazing, and sometimes the pathways do re-connect.

I am one of the lucky ones, still have fairly normal amount of sensual sensation in the breast skin, although I was not eligible for nipple-sparing. I did have the DIEP reconstruction that you say you don't want -- but I had plenty of belly fat to part with

The good news is that only 2 months out now, I feel almost completely normal again, and actually felt pretty darn good from about 1 month out -- (as far as getting back energy and beginning to build strength).

BC will change us in lots of ways... a lot of it is mental, though -- and it doesn't have to suck so bad -- f you locate the positives (thank God it is only breast cancer and not a cancer with a less-successful treatment rate, thank God it was found early and hasn't metasticized... Thank God it... whatever you can come up with for your own situation... and try to be truly grateful for the chance to re-evaluate your priorties and what is most important to you -- family, friends, comfortable home ... whatever it is for you -- this is a great time to concentrate your efforts/energy THERE -- and let some of the trivialities of life fall away. 

As odd as it sounds -- I have found many silver-linings -- including how BC stepped-up the ante in my budding romantic relationship -- I am so much closer to him now than before -- and left my old life behind to move here to the mountains -- all because of the dx.

Best of luck -- you will wrap your mind around what will work best for you... and this forum is a great place to find some new points of view.

Happy New Year -- REALLY. This can (believe it or not) be your best year ever. It is all in your head whether or not you make it so.

Linda

Linda, I was in a similar position to you.  Too much DCIS in too small a breast.... I had to have a mastectomy.  I had two areas of DCIS, and despite having surgery that left me with no clear margins anywhere on any side of either area of DCIS, I resisted.  But then I had an MRI that showed that my breast was full of "stuff" and I knew that I had no choice. In my case, my decision was made easier by the fact that during my first surgery, a microinvasion of IDC was found, along with all that DCIS. So I was already Stage I rather than Stage 0, and I knew that my DCIS was right on the verge of evolving to become invasive cancer. To risk leaving any DCIS in my breast meant an almost certain diagnosis of full-blown invasive cancer. So a mastectomy it was.  

I had implant reconstruction. The simple truth is that the best you can do is regain surface skin sensation, and as SpecialK said, that doesn't always happen.  Think about it.... if you had a softball placed under your skin in place of your breast, you wouldn't expect to have any natural feelings.  But because we are having "breast reconstruction" there is a hope that we can regain feelings. But an implant is really no different than the soft ball.  Beyond skin sensation, some women do experience other phantom sensations and it's easy to think they are real. For the longest time, and sometimes even now after 7 years, when I get cold it feels as though both my nipples become erect.... except I only have one nipple. So I know those feelings are phantom. I also get phantom itching. That sure feels real! But when it comes to real feelings, unfortunately surface skin sensation is as good as it gets with tradition reconstruction (implant or autologous fat reconstruction).

There are newer methods of reconstruction that aim for a more natural appearance and possibly could result in a bit more natural sensation returning, but as far as I know, the jury is still out on that.  I know that's not what you want to hear, but better that you know the truth than hope for something that's not going to happen.  To SpecialK's point, have you discussed with your surgeon the possibility of a re-excision?  Or could you get a second opinion?  I did that, and in fact while my second opinion surgeon also recommended a mastectomy, he was willing to try a re-excision, although he was pretty certain that we still wouldn't get clear margins.  With the MRI results, I decided to go straight to the MX.  But if the MRI had been clear, I definitely would have gone with a re-excision before a MX.  

In response to your similar post yesterday, I suggested that you may want to post your question in the Reconstruction Forum. You'll get more answers there.  And here are a couple of threads in the Reconstruction Forum that you may find helpful:

Topic: Nipple Sparing Mastectomy with immediate reconstruction

Topic: Has anyone had micro fat grafting?  This thread includes discussion about BRAVA reconstruction, which is one of the newer methods, that aims to improve appearance and sensation.  

I was in the same situation, although I tried a re-excision to get clean margins but it was unsuccessful.  My breasts have never been an erogenous zone for me (except for when I was pregnant and *gosh* I finally got what everyone was talking about), so I did not not experience loss in that area.  I have a little bit of feeling in my breasts and have read of some women retaining some nipple sensation in NS MX.  Finding out that I needed a mastectomy was pretty devastating and making all the decisions was grueling. You have to make the best decision for yourself.  Peronally, I did not feel that MX was overtreatment for widespread and high-grade DCIS.  I feel that I've been fortunate to catch this early and avoid chemo, radiation, and drugs.  The surgeries were no picnic but I have recovered, my breasts look great, and I am moving on with life.  I am not living with constant worry that I have undertreated the cancer.  As my friend told me during my decision-makign phase, "Do what you can live with in the dark of the night."  That seemed really melodramatic at the time, but those late nights staying awake and worrying are the true test.  Best wishes in finding the path that is right for you.

I had DCIS 8 years ago for grade 2 and had partial mast,and in Sept this year had a bad mammogram. Yes, the DCIS was back and this time with IDC. Second time around was a mast and my BS called with that path and was so happy we chose that--altho there really was no choice. On the mast path, I had a much larger area of DCIS with a much larger area of IDC. Yep, DCIS is nothing to fool with since we don't know whose DCIS will be overkill and whose needs treatment. I'm glad I got the treatment.

I have had direct implant reconstruction and am doing well with it. I do have one remaining natural breast. Maybe you'll get some feeling back somewhere in the implant side; I sometimes wonder if I feel something other than the area around it. Only time will tell. If no more feeling, at least there's the one natural breast and sounds like you'll have a natural one too.

Hudson -- I guess none of us can compare what the implant feels compared to fat-grafting or reconstuction using natural tissue (DIEP flap, TRAM flap, etc) because we each only have ONE choice to try...

I heard negative things about implants, mostly that they were cold and hard and always felt like a baseball under your skin. I liked the idea of warm breasts that were made of me -- (belly fat) -- and would grow thinner/heavier/older/saggier naturally, along with the rest of me... and I love the results I have after BMX/immediate-DIEP recon -- just two months ago. One of my deciding factors was that I lead a very active life out here on the ranch -- and I was concerned that implants need to be replaced every 1-15 years. (How is that for a range of time? One year? Really?) 

I SO do not want to continue to have to have surgeries down the line, and with DIEP you complete the 3-step process (some docs it is a two-step process) and you are done for the rest of your life. 

DIEP isn't available everywhere (nowhere in my state of NM), so I had to travel to get it, but at least so far, I am thrilled with my results and the way my new (belly-fat) breasts feel. And the best news -- no more chance of bc in the breasts -- ever!

Other women on here love the look of their new implant breasts, though -- and the idea that they will forever be high and perky. For me -- I would prefer that my whole body ages in complementary unison...

Some women also go for the TEs and implants because the DIEP surgery is much longer - more chance of complications re anesthesia, and longer recovery time because of the abdominal scar.

But at one month post-surgery I was feeling pretty darn good -- and now, at 2 months out I feel great -- I think pretty much normal again!

Very personal decision -- and these boards are a great place to hear from women who have been there!

Good luck,

Linda

Linda and Ginger: Thanks very much for all the info. It's very helpful.

I'm meeting with a PS this week to discuss my options and based on the info I have now, I'm hoping that I can get a tissue-only (flap) procedure. But I didn't know about the 6-hr surgery time. That's scary!

Because of my body and stomach size, etc., I probably can't have the DIEP. I'm also very active -- hiking, walking, swimming, weight-training, etc. -- so I'm concerned about long-term muscle/mobility problems.

Actually, the 3 docs I've consulted -- 2 BS & 1 oncologist -- think there's little chances of there being anything left at the margins -- b/c I would get re-excision for clear margins if I choose that route and b/c of my path and imaging reports. So it's a matter of my risk for future DCIS or invasive and whether I can live with that risk.