Types of mastecomy if I don't want to have reconstruction

plover, thanks for the info. And others, thanks for the support.

I'm actually feeling a lot better about things this week. I put my big-girls pants on and made a couple of calls on Tuesday. I spoke to the nurse at my doctor's office (very sweet and understanding woman!) and explained that I felt I wasn't being understood. She spoke to the doctor, who called me on Wednesday morning. I think we may still be able to work together and that it may have been a matter of something "lost in translation." Speaking to the nurse made a difference, though, because she finally understands that I really, truly have no plans to change my mind about reconstruction. That's a big step forward.

The second thing I did was to make an appointment for a 2nd opinion, which will happen on Monday. My BS was glad to hear about that, too, which made it all the better.

My MX is preventive, that's why the SNB came as a surprise to me. BS says I don't have to do it, it's just her recommendation. I'll see what the 2nd doctor thinks. I may also opt for doing only one arm--it may not make sense, as hidden cancer could occur on either side, I know, but I've had this odd feeling on my left side for this entire year. I've mentioned it during several appts and was told the armpit showed up clear in my MRI. But there's a nagging feeling that my armpit knows something that we don't :-)  So, I might decide to take my chance and check that one. I'm really afraid to do both arms as a preventive measure.

But the good news today is that being brave this week has put me in a much better frame of mind. Happy Thursday, Y'All!

Lilith, that is correct, if only it was that simple and the SNB could be done, after the Mx.

If I were you, I'd be asking if there is any way you can have the tracer injected before the surgery, to identify the Sentinel Node and then during surgery the dye can be injected, but the nodes left intact. After the surgery, when your tissue is examined by the Pathologist, the decision can be made about removing any nodes. This was ground breaking when Angelina had her BMX. I have no idea if it is mainstream now, but since the blue dye hangs around for at least several days after being administered, it sounds like a win, win, if your Surgeon is willing to do it. I wish it had been available when I had my Umx.

I posted earlier in this thread about my experience and I have  to say that now, in retrospect, I would still have gone ahead with having the SNB done with my UMX, even though there is a small possibility of LE.  I also experienced discomfort, as reported by Plover, under my arm, from that part of the surgery, but had there been any invasive component, after my final Pathology report, I would have been devastated to lose a whole level of nodes or forbid, have to have a full Axillary clearance.

There are many weird sensations that come with this type of surgery, but I don't know if all can be attributed to the SNB. My Surgeon explained, that most, like the zinging, burning and zapping, come from the regeneration of nerves that were cut during the surgery. I am not certain just how much difference there would be, in sensation, if a SNB isn't done at the time.

Like Plover, I had cording too, but mine was like a snaking tree branch, that came from where my nipple had been all the way down my chest and abdomen and under my ribs. That was Dx as Mondors disease and is caused by trauma to the breast. It resolved itself a few months down the track. One of the branches actually snapped when I turned over in bed one night.

My Mother had BC and had a radical Mx in '96, there was no such thing as the SNB in those days, so she had a full Axillary clearance, only to find she had no affected nodes. Although that news was sensational to receive, she did have LE for the rest of her life and constant pain, from the procedure.

I am now 21 months out from my Umx and SNB and I am still completely numb, under that arm, but thankfully the discomfort is long gone and that sensation is now just a part of me that I rarely notice.

It is a highly emotive issue, to have, or not to have, this SNB, in conjunction with low risk, for invasion surgery. I wish you all the best for your final decision.

Hi Lilith it was done at "The Pink Lotus" I am sure there will be info about it on their website. Good Luck with it.

Edited to say: Kristy Funk was the Surgeon.

plover, no worries! I had read only about blue dye. Will ask about radioactive, too, and see if there's an advantage of one when dealing with prophylactic surgery. Thanks!

wow so glad to find this forum. I have an appt w a PS that does DIEP flaps Monday. Planning a BMX and realized I'm looking at reconstruction because that's what all my friends who have had BC have had done. I am unique and don't have to do that just because...

So here's the question. Do I just insist the BS does a straight line incision or does anyone bring in a PS too to make sure the job is smooth?

Hi, Chloesmom,
You most certainly don't have to do reconstruction just because that's what everyone else is doing! There is no single solution that fits every patient; you need to do what you feel is right for you, and not to meet the expectations of anyone else.
I met with a PS who did only saline implants and TRAM or LAT flaps, and did also have a consult set up with a DIEP specialist. I just wanted to say that I had at least listened to my options. I ended up canceling the DIEP consult as I knew in my heart what I wanted.

I had looked at photos on BreastFree.com to get an idea of what to expect. I identified one that looked perfect to me--really straight, horizontal incisions. My story is a little messy because my original BS and I did not see eye to eye; she really was not on board with my decision to forgo reconstruction. So when I showed her the "perfect" pictures she of course said she couldn't guarantee results like those. But she also said she would make a much shorter incision. I ended up changing surgeons and with the new doctor I did not show her any pictures. I just asked what she would do. She decided to make my incisions slanted downward from side to center, with the hope of minimizing any "dog ears" to the side. I did ask if she would try to make the incisions symmetrical, and while they're not mirror images, they at least line up, more or less. They're not as straight and perfect as I would have wanted, but I'm ok with it as I learned a few things along the way.

One, you might not know what lies hidden underneath your breasts! I've been aware for many years that the ribs on my left side stick forward more than the right side. I was told I have a slight scoliosis, so I chalked it up to that. Well, where the left ribs protrude, the upper right ribs sink back. And so, with all the care in the world, the topography of my chest will never really be flat. I'm learning to appreciate the contours

I lost my train of thought here and have already strayed from your original question anyway...Do you bring in a PS? I believe some people do. If your insurance will cover it and it makes you feel more comfortable about the outcome, why not? I do think my incisions might have benefited at least a little from having a PS. As I mentioned, they're not as straight as I had hoped. But apart from that, they are healing beautifully--really a very fine line, even at less than 6 weeks out. Results will vary, I'm sure, so I think it wouldn't hurt to ask about coordinating with a PS. That's something you'd need to talk to your BS about. He/she may work with only certain doctors, and you'd need to consult with one of them about doing "the closing".

Do keep us posted!