Questions about Simple Mastectomy (no recon)

shadow38

Hey Everybody:

I wonder if all the generous and caring people here might be able to answer a few questions about simple Mastectomy surgery. 

I had a Lumpectomy and SNB this past Monday and did well.  No real pain other than immediately following surgery.....just discomfort.  Unfortunately, when the pathology came back on Friday, the BS informed me that I have 2 dirty margins.  One is the anterior margin (very close to the skin) and the BS does not feel he can get a good result from a re-excision at this time.  He took quite a bit of tissue the first time and will need to do the same this time.  On a B-cup breast, the results will be poor.  As he put it, the breast (which will be a full cup size smaller with this first lumpectomy) will be "misshapen and deformed looking" and very small because he will need to take skin and additional tissue.  He is willing to TRY a re-excision after Chemo when we'll have "artificially clear margins".  I'm not wild about waiting to be cancer free and take a chance that random cells still left behind might take up residence elsewhere.  He didn't specifically push Mastectomy, but we certainly discussed it as an option and he felt that in light of the poor result I'd have from a re-excision, it was something I should think about. 

I've decided I'm going to tell him I want the Mastectomy now.  I'm going to ask him to do a skin sparing surgery and will consider reconstruction later.  I'm totally ambivalent about recon right now, but I want to allow for the possibility later.  People say I'll be sorry I'm not having recon done.  I don't feel that at this point.  I feel like I want to get my life back, enjoy myself and my family and not submit to additional surgeries. 

In short, I have a few questions about simple Mastectomy and recovery and I was wondering if anyone could help me out.

1.     How long does recovery take compared to Lumpectomy with SNB?  I had an approx 4 inch incision from the Lumpectomy.

2.     What can I expect in terms of pain from just the simple Mastectomy?  I had very little with the Lumpectomy and SNB.  Discomfort, sure.....but not really serious pain. 

3.     How long after Mastectomy can I begin to wear a soft fake boob so that I look balanced?  I'm wearing a soft, snap front Bestform bra now and there is no discomfort to the Lumpectomy site.....just a little pinching to the SNB site and I use a gauze pad to alleviate that.  No big deal.

4.     How long after surgery can I be fitted with a mastectomy bra and a my prosthesis?  Can I get a bra with a flap on the inside to hold the soft fake boob until I get my real prosthesis?  Where would I find something like that? 

Any advice you guys could offer would be greatly appreciated!  I've found so much caring and support here.  I don't know what I would do without this site and all the generous women here!

Love,

Kathy

glostagirl

Wow, decisions, decisions.  

We have almost the same dx, except that I'm triple neg.  I did the whole breast sparing thing, lumpectomy, chemo, rads, and then had a recurrence a year out almost to the day.  

I'm 52, not to brag, but I'm very active and most people think I'm in my 40's. So for me the breast conservation was partly ego, sure (DD's are hard to give up), but also the whole uninvasiveness of the surgery was very important to me at the time.  However, after what I've gone through with my recurrence, there is certainly a part of me that now wishes I had gone with mastectomy and immediate recon., right from the get go and I would have been so ahead of the game.  

I don't know how old you are or what physical shape you're in or any other medical issues you may have so it's hard to objectively answer your questions or make a recommendation, but I'll try my best.  I'm sure others will chime in as well.  Check out postings/profile of a woman who goes by the name Binney, she is very knowelagble.

I'm recovering from surgery myself.  My case is not a simple one as I had immediate recon., but unfortunately had anatomical complications.  My recovery will be longer than most.  I'm almost 2 weeks post-of and do feel stronger everyday.   

1.  I think without complications the recovery is similar. 

2.  It's a larger wound, so perhaps a bit more pain and time to heal.

3.  I am breaking myself in slowly to wearing a bra, a few hours a day and them I'm back to the surgical bra.  I wear it at night as well, very comfy and I don't care if it gets stained from wound drainage etc....  I would recommend this approach.  That way you won't go out for a full day of errands/activity and find yourself in pain from the discomfort. Too much compression to soon can cause muscle spasms and other pain.

4. Every body heals differently, your body will tell you when it's ready. I  think the usual might be 4-6 weeks. I would think if you went to soon for an expensive form, it might not feel/fit the same as you continue to heal.  I seen posts from many women on this site and they use all kinds of fillers to  make do until they get a good form.  Socks, pantyhose, fiberfill forms.  Do an on-line search for local sources of mastectomy products.  There are on-line sources that are good and offer discounts. But for your first good form I think local is the way to go.  When you have more experience in what you like and need, then go on-line.  

I did get a post-surgery camisole, which came with 2 fiberfill forms, and also a front closure mast. bra (with form pockets) on-line and have used both.  The products were made by Amoena, which is a good quality mastectomy, product line.  The on-line source~I'm having trouble remembering the name.  It might be something like  Medco or Medline, it was one of the first ones that came up in my Google search. They have great products at reduced prices.  My order arrived very quickly.  

I do question your reluctance to do immediate recon.  It's done during the same surgery as your mast. The surgery is longer but the recovery is similar, with the exception of the TRAM procedure which involves abdominal muscle.  A big pro is that you won't have to revisit surgery again for recon.

I'm not one to force my choices/opinions on others.  But I urge you to give it more consideration. Do the research and then revisit the pros and cons.   One difficulty lies in finding a surgeon who has done hundreds of these procedures, you don't want an inexperienced PS doing a Flap procedure on your body.  A lot of women end up traveling to Charleston, SC, Chicago, New Orleans, to name a few, to get the  best. Depending on your health insurance, there may be issues as well.  The best surgeons have experts on staff who work with insurance companies to get coverage for their patients.   

Look into these procedures:  DIEP, SGAP, IGAP, TUG, LAT FLAP, and lasty if you haven't been radiated you could have an implant  

Good luck.  Hope this isn't to much information!   

suemed8749

Hi Kathy -

I had immediate reconstruction (tissue expander placed after the mastectomy), so my experience won't be exactly the same, but I wanted to wish you all the best. I understand the feeling of wanting to get on with things - I just wanted to start chemo, and it took awhile since I had also had a lumpectomy (and then a re-excision) before the mastectomy.

I got a Softee camisole in the hospital - great because it has a "kangaroo" pocket for the drain. And I could wear the "poofy" that came with it almost immediately. I lived in this thing - if I had to do this again, I would make sure I had two!

I had surgery on a Tuesday (spring break 08) and went back to work (hs teacher) the next week. I'm sure you will have to take off longer if you have a more physically demanding job, but I was fine. I know that my students probably spent a great deal of time trying to figure out which side it was, but with big jackets and shirts and my poofy, I was fine. After I was able to wear a bra, I got a lightweight form from the TLC catalog - it worked great while I was getting fills in my expander because I could pull out the stuffing as I needed to.

I took the big painkillers for only a few days - was fine with OTC stuff after that.

I never looked back after making the decision to have the mastectomy, and it really was far easier than I thought. A friend of mine brought some flowers over the evening after my surgery, and she almost dropped them when I yelled at her to come in. I was sitting fully dressed watching TV, and she couldn't believe it.

You'll do fine, sweetie. Come here any time with questions.

Love, Sue

Erica3681

Hi Kathy,

I'm sorry you're going through this. Unlike glostagirl, I believe that if you have ambivalent feelings about reconstruction, it's a good idea to do just what you're considering--have a skin-sparing mastectomy and delay reconstruction. That way, you'll heal very quickly and have an opportunity to see how you feel living without recon. You can always have reconstruction later. I know one valid argument for immediate reconstruction is that you get both the mastectomy and the recon done all at once. That makes sense for women who are sure they want reconstruction. But not for those who are on the fence. My breast surgeon told me that the most unhappy patients she's had are those who weren't sure whether they wanted reconstruction but went ahead with it and then later regretted it. 

You might find my non-profit website, BreastFree.org helpful regarding your questions about the surgery. I have a section, Post-Surgical Interim Solutions, that offers advice about camisoles, soft puffy forms, and other things that make life easier immediately after surgery. 

Most of us who had mastectomies without reconstruction found the surgery not to be very painful--the drains are often the most uncomfortable part, but not really painful. Having had a lumpectomy and snb prior to my bilateral mastectomy, I think the snb aftermath was actually more painful than the mastectomy. But the mastectomy is definitely is a larger wound, with a longer healing time. 

While many women feel that reconstruction is the only way to go, on this forum you'll find that many of us view non-reconstruction as a positive alternative to reconstruction. There are many lightweight, comfortable breast forms available these days. I can wear all the clothes I wore before and look perfectly natural. I had no complications from surgery, no extra scars, no tightness that can sometimes result from reconstruction. 

Good luck, whatever you decide.

Barbara

nagem

Hi Kathy, I'm with Erica. I had a bilateral mastectomy after a lumpectomy that failed to achieve clear margins. I was initially planning to have immediate DIEP reconstruction, but I didn't have much of a belly to donate to the project, and I began hearing a lot of horror stories about complications, so I decided to go the unreconstructed route. I had virtually no pain once the nausea from the anesthesia wore off and was back at work and on my yoga mat within a couple of weeks. The big surprise for me was how little I miss my breasts. My 18-year-old daughter was looking at before-and-after pix a few weeks ago, and she said, "Mom, you looked weird with boobs!" So the lack of trauma was shared by all! I think you're smart to give yourself the option of continuing breast-free or reconstructing at a later date. Best of luck

bre

Hi Shadow,  I had a skin sparing mast with SNB and 8 other nodes removed.  The node removal under my arm bothered me more than the mastectomy.  I chose to do it this way because I wanted the bc gone asap before it went anywhere else and was uncertain about recon.  After much investigation, I have decided that I don't want any more surgery and don't want to risk an outcome I wouldn't be pleased with.  I was diagnosed at 49 and was more interested in not having anything cover up any possible recurrence.  I stayed overnight at the hospital and on discharge just took mild pain pills for a couple days.  When my drains came out at 10 days, I wore a regular mastectomy bra with a soft foam form in it until my 6 week checkup when my surgeon wrote a prescription for a breast prosthesis.  I got my original bra and soft form from Reach for Recovery part of American Cancer Society for free.  You can also order them from tlc catalogue which is very reasonable.  It has been 5 years for me and I haven't done recon yet and am very pleased with life as I am.  it doesn't bother hubby or anyone else if i decide to go without a prosthesis relaxing at home.  I wish you luck and let me know if I can help with anything else.

shadow38

Sincere thanks to everyone who has shared their experiences and their advice.  I can't express how grateful I am. 

Things have become more complicated and I'm back to not knowing what I'm doing.  I'm so confused at this point.  I almost feel worse than when I was first diagnosed, although not quite.  I'm learning that with BC, there aren't always clear cut answers to things.  Just risk tolerance and more questions and decisions.

Yesterday, I called my BS to tell him I'd decided on Mastectomy.  He seemed very surprised.  After being very non commital during our appointment on Friday, in Monday's conversation he seemed to be leaning toward re-excision of the lump AFTER Chemo.  He told me that after chemo he'd be able to take 1/2 - 1 cm from each side of the incision and an ellipsis (crecent moon) of skin the length of the scar (about 4 in to the right of my nipple).  He said the result would be that my nipple might be off center.  That doesn't sound all that "deformed" to me, especially when one considers Mastectomy without recon.  He also said that when he stated I'd be "artificially cured" by Chemo, he didn't mean to imply that would be any different than technically cured.  The cancer would be gone and he said it doesn't matter how that happens.....just that it does happen.  He also point blank said he would go for re-excision and that he thinks we'll get clean margins after chemo.  Also said those few cells left behind won't cause problems during chemo since they'll be erradicated.  I don't know if it's me because I'm so nervous, or if it's the way he puts himself across when explaining all the options, but this is confusing.  He's a very mellow guy.  I think I also have the "Big Daddy Syndrome" as I like to call it.  I want somebody to tell me what to do.  I know.  Stupid and unreasonable.  Everyone here seems to be so clear cut on what they want.  I'm just confused. 

Anyhow, I ended up calling my Oncologist.  I wanted her opinion on the issue as well.  She's so easy to talk to - very responsive and willing to take whatever time you need to get the questions answered.  I asked if it was safe to wait until after Chemo for the re-excision and if it made any technical difference in terms of one of the cells getting away.  She said:  NONE.  She felt the cells "were not much of a problem" and said I am "technically cured" as far as she's concerned, even with the dirty margins.  She said the bulk of the problem is gone and the current problem is more cosmetic.  She said the only difference is that with the lumpectomy, chemo and rads, my reoccurrance rate in the same breast is 10%.  With the Mastectomy and Chemo, it's 2%.  All other statistics remain the same. 

In short, I'm more confused than ever.  I've heard the opinions from the doctors and none are definitive.  Neither can say "this is what you need to do".  Is it always like this?  Is it all a crap shoot? 

Thanks everyone for listening and letting me rant.  I have my appointment with my MO on Thursday.  We'll discuss my chemo and when I'll begin.  I guess right after that, I'll get my port.  Looks like I need to make a decision soon.  Just not sure how to do that. 

Mouser

Hi Shadow --

I'm sorry you have to go through this! Have you considered getting a 2nd opinion? Unless your current BS is at a *major* medical center, it might be a good idea to see another bs, or maybe a plastic surgeon, for his opinion on what the breast would look like. I would also talk to an oncologist for his opinion on leaving those dirty margins. They're the ones who deal with recurrences.

What you do depends on so many factors -- especially your sense of self and how much it depends on being intact; but also your significant other's opinion, your age....My onc was also encouraging a 2nd excision (tho the story was quite different), saying the breast would be acceptable. I got a 2nd opinion and had a mx, leaving my recon options open. It's been 8 months, and i'm still freaked out about being lopsided, but not enough to consider more surgery... but i wouldn't do anything without a 2nd opinion - at a med school or major medical center, not from someone your 1st opinion plays golf with!

Seems to me, if they're doing chemo first, you have plenty of  time before you have to decide. Take your time, even if you don't go for a 2nd opinion.

All the best!

Tabbygirl521

Aw, Kathy, I just saw this thread today. I am so sorry things have become so complicated. I don't have any advice (and you have good stuff here already) but just wanted to say I sympathize with the frustration.

It's so hard to be dealing with the emotional aspects of this while trying to absorb so much new, important information. And with so many gray areas. Hang in there - I will be thinking about you.

Angela

bre

Hi Shadow,  Yes you are experiencing what seems to be ormal for us.  Docs rarely tell us we have to do something....just give us options and wait to see what we choose.  I agree in that sometimes I would just like someone to tell me what to do also but it's left up to us.  So make the best decision you can based on the information you can glean and don't look back or second guess yourself later.  Good luck!

nagem

It's so stressful not having clearcut answers. I also had to start chemo without clear margins. One advantage to that situation is that you do have the time to mull over your decision. By the time I had my mastectomy (a full year after my lumpectomy), I was pretty darn sure that was what I wanted. Living with anxiety and uncertainty clarified my decision for me. And I agree with the advice to get second opinions. It's always best to be armed with more information rather than less. Good luck ...