questions re: Masectomy

I have just been diagnosed with microcalcifications in my left breast & they are In Situ cancerous.  At my consultation with a breast surgeon, she said I didn't have any options other than a masectomy because there are so many calcifications all over the entire breast, but have not spread.  I am going for a 2nd opinion, knowing he most likely will say the same thing.

If anyone out there has had a masectomy I would like to know whether implants are better, or they can also take tissue from my abdomen.  Which I know is 2 surgeries so the recovery time would be a lot longer.  I would just like some feed back on which one sounds best and also what is recovery like?  How painful?  How disabilitating?  The surgeon also mentioned having blood bulbs attached to me by cafeter, which need to be emptied every day, this is kind of scary too.  If anyone has experienced this I would really like to here how you got through it.  Thank you so much.

[lhughes]

My mom's case sounds like yours...she was DCIS Stage 0, mastectomy.  She had a tram (which unfortunately failed) and then after a number of surgeries she had an implant.

I had Stage 3 cancer, mastectomy, chemo, radiation, tram reconstruction which worked BEAUTIFULLY.  Took nearly 2 years to get there, worth it.

Questions, how old are you, are there any other health problems, are they wanting to do chemo?

If chemo, here's my opinion....  do the mastectomy, get the chemo, heal....have a reconstruction.  If not chemo or radiation, reconstruction is all a personal opinion.

Here's what I know about both....

Tram...difficult surgery, mine took 6.5 hours.  4 days in the hospital, 6-8 weeks recovery, plus nipple reconstruction and then areola tattoo.  Benefits, tummy tuck.  And my frankenboobie looks pretty close to a real one.  No feeling in the boob, not much in the abdomen area, but some may come back later.  It's barely been a year.

Implants (what I wanted originally, but not a candidate b/c of radiation).... expanders, second surgery for final implant... not so difficult to get over.  Chances of having to redo in 10 years, pretty good.  From there, I only have mom's case to discuss, and it wasn't very good.  Her breast doesn't look nearly as good as mine.  Chances of leakages, pretty good also...here again I can only talk about those I've heard about...mom's leaked during the expander period.  Afterwards, the implant slipped below her armpit.  She was unlucky in a lot of ways.  Her op is NOT TYPICAL.

Your decision is personal.  Ask yourself if an implant is what you want.  I would have done implants save the radiation thingie that knocked that option out.  Either way, you'll get the other breast lifted to match the newly constructed one.

The best thing I ever did was to start asking everyone if they knew someone who had a reconstruction and what they thought, who did they see, etc.  Get someone or many someones to recommend a plastic surgeon.

[japdip]

Hello .. I can't speak to the reconstruction part of your question as I chose not to have reconstruction. I felt the one surgery was enough for me and I was older when diagnosed. The mastectomy itself was not a big deal to me. I had no pain ... stiffness and soreness of course but no actual pain. I found the excisional biopsy more uncomfortable than the mastectomy as odd as that sounds. The drains you mentioned are necessary to drain blood and fluid that gathers after the surgery. I had two and they are catheters than are attached to a little bulb type device (similar to the bulb on a B/P apparatus). They fill with fluid and need to opened and drained as often as necessary. The nurses will teach you before you are discharged from the hospital. One of mine was removed about a week after surgery and the second one around 10-14 days. I think you will find the process a lot simpler than you now imagine. A second opinion is always a good idea and most surgeons usually suggest it; at least mine did. Wishing you all the best and a speedy recovery.

[japdip]

One more comment .. I think you would find this Forum very interesting and informative. It is conversations among breast cancer survivors, etc. give it a try: bcsupport.org

[JenKris]

Thanks for your reply.  Thank you for explaining the blood drains & how they are really not that big a deal.  I did get a second opinion & he also feels a masectomy is best because there are so many microcalcifications in my left breast.

Now the ? is, do I have just a single masectomy? or a bi-lateral masectomy to get over with what seems inevitible of the cancer manefesting there too some time in my future?

[JenKris]

First of all I'm sorry that both you & your Mom had to suffer through this.  I didn't even realize a Tram could fail?  I know its unlikely, but how does that happen?

I'm 37 and have no other health issues.  I'm still in the discussion process and haven't made any decisions as of yet.  But from what I understand from my 2 consults w/breast surgeons, I would get a masectomy (1 surgeon wants me to get a bi-lateral so I wouldn't have to worry again or go thru surgery again for what seems inevidible), but as of Right Now, I think I'm only getting a single masectomy & reconstructive surgery via Tram at the same time, then follow up with radiation therepy - I dont believe I'll need chemo.

You said your recovery was 6 - 8 weeks.  How painful was this?  Were you allowed to take pain killers?  How much mobility did you have?

I have had 2 c-sections and recovery was not fun, painful.  I could only imagine that this would be much worse.  - thanks again

[lhughes]

Recovery of a tram is very similar to c-sections.  You'll have to not use and find other muscles just like a c.  However, the slice will be all the way across and not just big enough to get a baby out.  :)

Seriously, it's rare that a tram fails.  My mom was only the second person with this plastic surgeon's group that had ever had issues.  It is not rare that a spot or two will go bad and have to be fixed.  I was very lucky that everything went exactly as it should.

They'll get you out of the bed on day after surgery, mostly because they'll take out the catheter.  And unless you want to pee in the bed, you'll figure out how to get up and make it to the potty.  Once you do that 3 times, you find you'll start to feel more normal.  The first few times though....oh that hurts.  I'm not gonna lie.  Have someone with you at all times during the first day (like a mom, hubby or friend).  The nursing staff is good, but they can't always be there when mother nature is screaming at you.

Yes, you get a nice morphine pump for as long as you need it.  Morphine, good drug.  I weaned off the pump on day 3 and went to taking oral meds.  Went home on day 4.  However, I was scheduled to be there 5 days.  If you do everything the docs tell ya which is to get up, use that sphagometer thingie to get your breath back, cough to get the goo out of your lungs (use a pillow on top of tummy to hold it in), and start walking, you'll do fine.  PS...road trip home, that hurts too.  Take the small flat pillow they'll just throw away at the hospital.  That is just the perfect size for this.

6-8 weeks recovery is the standard.  You aren't allowed to pick up anything heavier than 5 pounds, very similar to a c.  As soon as I could, which was about 4 months out, I went to the gym and got a trainer to help me get my stomach muscles and arm muscles to stretch back out and regain some strength.

It's really not all that bad.  The first week is probably the WORST.  And I mean, BAD.  However, once you get those drains out and get to be able to walk more upright and do stuff, it gets easier pretty quickly.

We can hope your recovery goes as well as mine and you'll be back to normal quicker than you think!

[JenKris]

Thanks for being REAL.  All I kept hearing is, oh recovery isn't so bad, you'll bounce right back - its not as bad a a c.  But I knew it had to be.  I much rather know what possibly to expect then to not expect anything and feel dreadful!!

Oh, damn, at least with a c-section you get a baby out of it!!!  Other than the pain, I just hate being poked and prodded by people.

I'll keep you updated, I will be scheduling my surgery soon.

-Shannon

[lhughes]

With a tram you get a TUMMY TUCK and a BOOB LIFT!!!!  And, if you are lucky, you won't need a bra!  That is just THE BEST.

That's better than a baby in some ways, although not as cute.  However, it can be just as fun......?????  Hubby likes it.  ;)

Breast cancer means someones always gonna want to poke a needle at ya...blood tests, bone scans, CT scans..... I just got used to it.

You will be fine.  First few days you won't think so, but it does get better.  Please do try to work the sphagometer (the breathing thingie) to get your lungs working better.  Hold your tummy softly with a pillow.  Just like a c, you'll think your tummy is just going to fall right on out.  But it won't.  The drains are a bit painful, the ones under my arm were the worst (but that was second time around for me and it was worse the second time).  The drains at the pubic area didn't hurt a bit although they are a weird spot for clothing.  

OH clothing.....  I found a zip up short robe that I took and wore.  You'll need something that is open in the front.  The only bad thing I didn't think about was the fuzzyness of the robe.  It tended to leave little bits of fuzz on the sutures.  Nothing bad, just funny looking since it was a mint green.  After they take out your IV stuff (which probably won't be until you are ready to leave), I wore a loose t-shirt and jammy pants that could be pulled up kind of high (to allow for the drain tubes) back to the house.

And use a very long shoelace as a necklace to hold the drains.  I used big safety pins to loop the drains onto the shoelace.  When you are in the shower, this is the best way to keep them suspended without hurting yourself and you have the ability to move both arms.

Please keep me posted, if I can help, or you want to talk out your fears.  I know I had them going into surgery.  Best of luck and I hope your surgery goes as well as mine!

Lisa

[JenKris]

Lisa,

Well thanks again, its nice when you could just talk to one person back and forth.  Although your kinda freakin' me out with the drain stuff! :)   (but still its ok I really want gory details so I'm more prepared). I guess just because the Drs havent explained any of that yet, so I really didn't know what to expect.  Why do you need a drain from the Tram, when you don't need one w/ a c sec?

Its funny that you mentioned a boob lift, I see how implants would never sag, but the new tissue going in there won't sag either??

Thank you also for the clothing tips - thats crutial!  I never know what the heck I'm doing in that department!!

Thanks again!

[lhughes]

I think the lower drains are needed because they'll remove muscle and tissue.  Plus, it's a fairly large incision...mine goes from one side to the other.  Mine is a bit high according to my mom, but I had a LOT of extra skin (we're talking a year after my last pregnancy), so they took all of it out and made everything smooth again.  That, to me, is just nice.  The scars are starting to fade and in a few more months, you probably won't be able to see the upswings of my incision.  The very low point of the scar, because of all the extra skin and the delicacy of the skin in that area, I'm told that it'll be pretty scarred forever.  It does look much better now, and luckily that scar is underneath the bikini line.

With a c, the muscle is cut, but not removed.  Plus with a pregnancy, the expulsion of water is a natural occurrance.  But that is a very good question.  HMMMMM...  Oh and for a c, I had staples, but with the tram, they used glue and stitches.  Hmmmmm.... curious.

So far, and I've been told, frankenboobie won't sag.  I'll confirm that in 20 years and get back to ya!!  :)  And no, I don't wear a bra anymore.  Mostly because the compression under my wing tends to make it swell a bit which then makes it uncomfortable.  It's a chicken and egg thing.... does it swell because it's compressed or do you compress it to make it quit swelling?  So I just don't wear a bra unless I REALLY need to.  I use a sports bra with total compression when I plan to do something with a lot of bounce.

Don't freak out over drains.  They are an annoyance and can be painful sometimes.  HOWEVER, remember that the drains will only be there for about 10 days.  You can do 10 days, can't ya?  Just learn to drain them well, have someone help with the ones under the wing, they are hard to get to properly.

You'll be fine.  :)  

[harcando]

Thanks ladies for the banter...I am new to this and trying to get as much information as I can before I go under the knife.  I'm still undecided on which reconstruction option to have but getting more info helps!