Mx and prosthesis for small-breasted woman?

otter

Hi, all--

I'm a little early with this question, because I won't know whether I'll even have a choice between lumpectomy/radiation vs. mastectomy until after I have an MRI next week. My core biopsy indicated IDC, dia. 1.6 cm. My surgeon said if the tumor is not more extensive and/or is not accompanied by malignant but invisible companions, I'll be able to choose between a "breast-conserving approach" (lumpectomy + rads) and a mastectomy, with or without reconstruction.

The deal is, I have always had small breasts (34B/36A), and I tend to dress casually most of the time.  So, I told my surgeon I was already leaning toward a mastectomy, since 1) I had small breasts to begin with; 2) I was not particularly "attached" to my ailing breast; 3) there might be invisible demons in there that aren't detectable with MRI; 4) lumpectomy could leave a significant divot in such a small breast; 5) I'm not too keen on radiation, considering the side-effects; and 6) from what I know, it would be pretty easy for me to adjust to a lightweight prosthesis under a stretchy bra, since I've never had much tissue there anyway (no cleavage, no roundness in my chest above my bustline, etc.).

My surgeon, who's female, said she didn't want me to be in a hurry to make a decision about surgery (assuming I have a choice).  She just wanted me to start thinking about my options.  So, with that in mind:

Am I right to assume that a breast prosthesis is relatively easy to deal with in a small-breasted woman?  Since it's so small and non-pendulous, it would stay put, wouldn't it?  I'm thinking it would nest pretty well under the type of bra I wear anyway.  Would it look OK, considering that a bundle of Kleenex worked pretty well when I was a teenager and could not find a bra that fit?

otter

caaclark

I am small and did lumpectomy first for my 1.6cm tumor.  It ended up that I had pretty extensive DCIS so after chemo I did the mast.  Everyone is different but for me dealing with a prosthetic is a non-issue.  I did a right side mast only so I do have one breast.  I am a 34 A/B.  I have a variety of forms-one fits in a pocket of mast. bras, one I use for swimming, and the other one sticks directly to my skin.  I am incredibly happy with all of them.  I cannot imagine ever changing my mind as far as reconstruction goes but I did explore all of my options first.  It sounds like you have a good doctor since she is encouraging you do to the same.  As soon as I talked to the ps I knew that not reconstucting was the right decision for me.  If you have not already done so, check out Barbara's website, www.breastfree.org.  Many of us on this board have shared our stories there.

Barbara, I hope you don't mind me referring people there. 

caaclark

I am small and did lumpectomy first for my 1.6cm tumor.  It ended up that I had pretty extensive DCIS so after chemo I did the mast.  Everyone is different but for me dealing with a prosthetic is a non-issue.  I did a right side mast only so I do have one breast.  I am a 34 A/B.  I have a variety of forms-one fits in a pocket of mast. bras, one I use for swimming, and the other one sticks directly to my skin.  I am incredibly happy with all of them.  I cannot imagine ever changing my mind as far as reconstruction goes but I did explore all of my options first.  It sounds like you have a good doctor since she is encouraging you do to the same.  As soon as I talked to the ps I knew that not reconstucting was the right decision for me.  If you have not already done so, check out Barbara's website, www.breastfree.org.  Many of us on this board have shared our stories there.

Barbara, I hope you don't mind me referring people there. 

Jenniferz

I'm only slightly larger than you...36B.  I had a maste in May, '06, and although I had skin sparing surgery, I have all but talked myself out of recon.  I have no problems with my prothesis, and my bras have pockets in them where it rides.  No 'popping out' and explosing itself here.  It fits like me.  I have strayed away from those with adhesive, because I have a problem with it, but I have heard this this is a different type of "sticky" , so may venture out and try it and see.  I would be good to wear a regular bra with no special pockets again.  Less expensive.

About your bathing suit, there are those that have pockets in them, and what I do is put in a bath scrungie in, and it all looks good.  If you do this route, you don't have to worry about chlorine eating up the prothesis.

Like caa said, breastfree.com is a wonderful site, and has many tips. 

Good luck with your surgery no matter what you choose.

Jennifer

I forgot...I do have a leisure bra that has a pocket that I use at home, and it is extremely comfortable.  And, it does have a little support so my one girl is not bouncing around all alone!

Erica3681

Carol, thank you for mentioning BreastFree. Since there are always newbies coming to this forum, I really appreciate you and others here letting women know about the site, which hopefully complements the support they receive here. I think your story on the BreastFree site is particularly relevant for Otter, since your sizes are so similar. There are several other stories by small-breasted women as well that might be helpful.

Otter, I'm also small, although I had a bilateral mastectomy (cancer in both breasts diagnosed three years apart). I've found a number of comfortable options for breast forms (prostheses). Like you, I have very sensitive skin, so I haven't yet tried the contact form Carol mentioned. But one of these days I'll give it a try. What I have found is another form, called an Airway Tritex, which is a silicone form with a very soft, comfortable microfiber back. You could probably easily wear the Tritex with the bra you describe. Since you're sensitive like me, you might find a regular silicone prosthesis would feel sticky and/or irritating in a bra without a special pocket. The Tritex can be worn in a regular bra or a mastectomy bra, so it's very versatile. 

I mention a number of other comfortable options on my site and provide links to the major breast form manufacturers, so you can check out what's available. There's so much, it's almost overwhelming, and there's more in the pipeline. I just spoke with a new company that's about to put out a "Comfort Line" of silicone breast forms with fabric backs, a similar idea to the Tritex.

Although many larger women do very well with breast forms, I do think you're right that it's easiest for us smaller women. In your situation, if you decide to have a mastectomy, I think it would be worth at least delaying reconstruction, to see how you like being breast-free. Reconstruction is always an option later on. I agree with Carol, though, that your doctor is doing the right thing suggesting you meet with a plastic surgeon to explore your options.

By the way, I was first diagnosed at 54 (I'm 58 now), so we're in the same age-range.

Barbara

12954

otter

 I had a right side mast in December. I am very small - i always bought the stretchy 34As (I'm probably really a double A). the formed bras never fit right. I have the smallest lightweight prothesis. When I wear it ( I can go without in a sweater or blazer without anyone noticing) I wear it in my regular old bras. I don't have a choice- I'm not big enough for a mascetomy bra. It works fine. The little Jockey stretchy bras hold it in fine. It doesn't go anywhere. The form came with a cover that I keep on it since it is not in a pocket.

Trish 

Erica3681

p.s. Trish makes a good point--even regular silicone forms can be worn with their covers in regular bras, which makes them more comfortable against your skin.

Raye99

Otter - I was a 34A as well -dx'd at 39. The bs gave me the option between a lumpectomy and rads  or mast- but she did mention that since my breast was so small, that she would end up taking a lot of it anyway.

I chose the mast (the tumor ended up being 5cm and I had node involvement, so I needed rads anyway); and as you mentioned above, there was another tumor in there along with the 5cm one, so I feel I made the right choice for me, although she may have been able to see the other tumor had she done a lumpectomy - I don't know.

Concerning the prosthesis: yes, a small size 1 prosthesis is very manageable. I would just stick it in my 34A Victoria's Secret smooth bra and was good to go.  I've since had proph mast of my other breast, so I opted for slightly larger prostheses which I use a regular mast bra for.

Best wishes to you!

Raye

nagem

I'm about the same age as you and built similarly (though I'm probably much taller) and have adapted well to a nonrecon bilateral (rarely wearing prostheses, but then I rarely wore a bra before the mastectomy). Something you might want to take into account in your decision: the toll reconstruction takes on your body either through the additional surgery for autologous recon or through adaptation to a foreign body for silicon or saline implants. I see many, many accounts of pain and failure on these boards, and although I also read comments expressing satisfaction about the cosmetic results, I know that for me, the additional assault on my tired, battered body was not worth the medical risk or the cosmetic benefit. Throughout this cancer ordeal, one of my struggles has been to see my body as my ally again rather than as my enemy. I see that it's trying its best to heal, and I'm trying to help it do so, and forgoing additional physical stress was part of that strategy. (In the interest of full disclosure, I was a poor candidate for either recon since I'd had radiation so implants were problematical, and I'm thin so autologous tissue is not ample, but the plastic surgeon was willing to give it a try.) That said, you can reconsider at a later time if you find going breast-free uncomfortable or embarrassing. One further thought: many women who have had a single mastectomy say they wish they'd had a bilateral—partly for the relief from anxiety about what might be lurking in the remaining breast and partly because of the symmetry a blilateral gives. Good luck with your decision. It's a difficult one.

roseg

Otter - you sound pretty comfortable with the idea of a mast/no-reconstruction I think you should go for it. I'd always thought if I got cancer I'd have a lumpectomy, like my mother, but things didn't work that way for me. When I knew mastectomy was my option I knew from moment one that I wanted reconstruction. 

Unless circumstances require you to have radiation, which might change the reconstruction implications, why not have the mastectomy and then see how you feel about it.  If you decide you want reconstruction you can do it later. 

Still, I think talking with the PS ahead of time is the best idea. A good PS will not try to talk you into reconstruction. He/she will talk about your options and explore any "what if" situations.  

Sparkle2

Hello Otter

13 years ago I had a lumpectomy and rads.  I am also small breasted.  With the amount of tissue taken and effects of radiation my right breast is rather deformed.  I have been recently diagnosed with DCIS in my left breast.  This time I am opting for mastectomy...no reconstruction.  I did meet with a ps and I just don't want to commit to the time for recuperation that reconstruction involves. or the additional surgeries. 

Get as much info as possible on all your options....its a tough decision, but once you decide be confident that your solution is the right one for you.  Good Luck....hope your MRI reports are favorable.

otter

Hey, everybody--

I tried something really weird this morning.  After my shower, I got my digital camera and took some pictures of myself from the waist up.  Then, I used photoshop to paint-out my left breast, just to see what it would look like to not have one.  I've looked at post-mastectomy pictures of "well-endowed" one-breasted women, and I'll admit to being kind of startled.

My own pics weren't so startling after all.  Like I've said, I'm almost flat-chested and I've actually had a hard time finding a bra that fits, at least prior to the arrival of sports bras and other stretchy, seamless types.  We're not talking cone-shaped here.  I didn't draw in a Mx scar, because I didn't know where it would be; but generally I didn't look as lopsided as I thought I would.  (The word "cyclops" always pops into my head, but that's not because of bra size.)

Now, if I could just convince my dh that I'm OK with this.  He knows me well, and he knows I don't like to take risks.  He thinks the main reason I am leaning toward mastectomy instead of lumpectomy/radiation is because of the remote chance that I might someday develop another malignancy in my left breast.  He also thinks I'm unnecessarily spooked by the side effects of radiation therapy following lumpectomy.  I'm beginning to wonder if he likes my left breast more than I do (although he denies this vigorously).

otter

roseg

He may be thinking it will be a little weird.

Most husbands manage to overcome these kinds of thoughts once they get in the sack and all warmed up! 

Anonymous

Otter - I'm small up top too! Had dble masts. Here's what works for me (very comfortable, light weight and under even tight shirts, they look quite natural):

Both can be purchased at: http://www.lingeriesolutions.com/index.asp?PageAction=VIEWCATS&Category=203

The bra is $20 and the enhancers are $40. The enhancers work really well in my bathing suits too.

Have you found out yet...Lump or Mast?

otter

Hey, everybody--

Thanks so much for the supportive comments and the suggestions about "resources".  I haven't made up my mind FOR SURE, but at this point my head is much more comfortable with the idea of mastectomy rather than lumpectomy/rads.  It's not because of a fear of recurrence as much as having to deal with constant checking of my remaining (lumpy) left breast for "new" lumps. And, I've decided if I have a mast, I will not have reconstruction at the same time.  I'll wait until I'm ready for it, if I ever am.  The plastic surgeon I saw last Thursday thought those were good, reasonable decisions.

I had the contrast MRI last Thursday, too, and according to the radiologist, it did not show any other suspicious areas besides the IDC we know about.  And, my right breast had no problems at all.  So, lumpectomy (w/ rads) to treat the tumor on the left side would still appear to be an option.  OTOH, according to the MRI that tumor measures 2.0 cm in greatest dia., not the 1.6 cm found by ultrasound. Still (barely) Stage I, assuming no LN involvement...but a bit more of a problem than I had thought, considering my small breast size and my obsession with getting good surgical margins.  (I don't want the surgeon to skimp on the surgical margins in order to "spare" my breast.)

I have a "surgery planning" appt with the onco surgeon tomorrow.  By then, she is supposed to have all the info I'll need to make a final decision about surgery.  I still don't know what else might be on the agenda, as far as treatments following surgery (don't know tumor grade, ER/PR or Her2 status).

I'm looking forward to getting on with this! 

otter

Anonymous

I can understand how you would still be on the fence, so to speak. Are they going to test the Sent Node at the time of your Lump or Mast (whichever one you decide on)? And...something to consider, although I'm not sure if this is do-able...How about going in for a Lumpectomy. If the surgeon gets squeaky clean margins and there's no node involvement, have them do just a Lumpectomy. But... if there's any nodes involved and they can't get squeaky clean margins, then have them do a Mastectomy right then. Maybe you've thought of this and maybe this is standard procedure. I don't know, because I didn't have a choice. Because my largest tumor was so large, it encompassed almost all of my breast tissue. Good luck with your appt tomorrow.

otter

I met with the onco surgeon today for the "surgery planning" session. My dh was with me, which helped, because I lost track midway through the questions I wanted to ask and he asked them for me. We found out a lot more about the tumor.

Yes, they do frozen sections on the SLN during surgery. They use a radioactive tracer and a dye, and take anything marked by either one. The surgeon said this usually results in 2, maybe as many as 4, nodes being removed. If they find tumor cells in those nodes, they do a full ALND right then. If they don't find tumor cells in the frozen sections but find them later with a full exam, a 2nd surgery is done for the ALND.

I can't believe I am still hesitating on the type of surgery. I went in today, fully convinced that I wanted a mast. The surgeon said the tumor was 2.0 cm and she needed 1.0 cm margins, so the excision would be a block about 4.0 cm dia. I said I was worried about taking that big a chunk out of a 34/36A breast, and then irradiating the remaining tissue. She agreed that "if the tumor was much bigger, it would be difficult to get an acceptable cosmetic outcome."  But she insisted that the mass was located where it could be excised easily, with good margins. She pointed out that taking the whole breast was an "irreversible" decision; but if I chose a lumpectomy and didn't like it, I could go back and have a mast. (Not sure my insurance company would like that!)  She was soooo serious when she looked at me--her eyes were asking, "Are you SURE you want to do this?"

My dh thinks I'm being illogical about wanting a mast, and he seems certain I'll regret having one. I, on the other hand, am more worried I'll regret NOT having a mast!

The surgeon said to think about it some more and give her a call.

Thanks for the support. My dh can't figure out why I find this discussion board so helpful and comforting.  We know, though, don't we?

otter

caaclark

It is such a hard decision.  I had a lumpectomy first for a 1.6cm mass.  I told the surgeon beforehand that if she thought I needed a mast. she should do it while I was there.  She said, "We don't do that."  In other words-I knew it would only be a lumpectomy no matter what until pathology came back.  After surgery she was definitely setting the stage with me that I would likely need another surgery.  She was correct.  I ended up having pretty extensive DCIS in addition to the invasive component.  But...in some ways she did me a favor.  I got used to the idea of a mast. while I was on chemo.

Also, during the lumpectomy she took 1/4 of my breast.  I was a 34B at the time.  You could not even tell.  I have heard that my surgeon is one of the best so maybe that is why she has that reputation.

The husband thing-I think lots of husbands don't get the discussion board thing.  It's not their fault.  Women and men are just wired differently.  Women are so much more social than men.  We need social contact in order to function well.  They just need, well, I don't really know what they need but I know it is not verbal communication.  Ok, I do know what they need.

Erica3681

Hi,

Even though I wound up with a bilateral mastectomy, I can see some good reasons to try the lumpectomy route first. That's what I did when I was first diagnosed with cancer in my right breast in 2004. I actually didn't get clean margins the first time around, but the surgeon wanted to try again (I had DCIS plus a small invasion). I was a 34B and it was amazing how much tissue she removed, yet my breast still looked good. After the second wide excision, clean margins were obtained and I went on to radiation. I enjoyed having my breast for another three years. I could still wear the same bras and, miraculously, my breast still filled out the cup.

When I had a second diagnosis of cancer three years later (extensive DCIS) that created a new scenario for me. I needed a mastectomy for the new cancer, so I decided to have a prophylactic mastectomy of the already-treated side. That meant I'd no longer need mammograms or, in my case, hormonal medicines.

In your case, however, whether or not you have a mastectomy, you'll still have your other breast, so mammos and other careful surveillance will still be necessary. So why not try the lumpectomy route and see if you get the good margins and if your breast still looks good? 

Lumpectomy surgery is generally ambulatory and a very easy recovery (the SNB will probably be a bit harder). When I had my more recent diagnosis, I had two wide excisions (lumpectomies), before it became apparent that I needed a mastectomy. The wide excisions were really not a big deal--I recovered well in a day (after the second one, I went to a gallery opening the next morning and felt fine). So doing the lumpectomy first wouldn't subject you to a great deal of unnecessary trauma.

The only negative thing about lumpectomy/radiation is that, should you ever need a mastectomy down the road and want reconstruction, the radiation will limit your options (implants don't do well with radiated skin and muscle).

All these decisions are so hard. Good luck making a choice.

Barbara 

SusaninSF

Otter,

My experience and advice echoes a lot of what Barbara said above. I had a lumpectomy, didn't get clean margins, and was re-excised. I didn't have a great cosmetic outcome but it was okay under clothes. The surgery was very easy and painless. I was back at work in two days. I decided against having radiation at the time since I only had DCIS. Six years later, I had more DCIS in the same breast and decided to go with the mast.  

Having my breast for an extra six years was a good thing. I was monitored very carefully so I figured any recurrence would be caught early, and it was.  Having a mast is definitely a much bigger deal and has had a much bigger impact on my life. In retrospect, I realize that at my age at the time, 36, without radiation, my chances of recurrence were very high. I focused on the mortality statistics which are very low even without radiation when I made my decision. At the same time, six years later I was better emotionally prepared to deal with the loss of my breast.

This is such a personal decision. I think the important thing is to weight out the pros and cons and then don't look back to judge your decision from hind sight. Glad you have joined us here on the board!

Hugs, Susan

Anonymous

OK ladies, I'm trying to read up on this, do you just order your proths off the net or are there actual places you can see this stuff?? I'm in canada and so far haven't had much luck as to response on where to get these things??? Bras and stuff too. How soon after mast can you start using a proth. Thanks girls.....need to shop...Viv

otter

Viv--

I just had my last post-mastectomy visit with my onco surgeon on Thursday.  She gave me a prescription for a prosthesis, and the nurse gave me a list of places that sell them.

Everything I've heard and read says you really need to go to a store and have the prosthesis fitted by someone who knows what she's doing.  Prostheses come in a lot of different shapes and sizes and materials, and they're pretty expensive (even with insurance), so I would not want to get one by mail-order and find out it was the wrong size etc.  Maybe after you figure out which one works best, then you could order it on-line.

I was not very happy with the list of suppliers I received.  There aren't any within about a hundred miles of where I live.  I think maybe the list is regional, and I need to check locally with the Red Cross or somebody similar.  Also, if you wait awhile, somebody will come along here and give you the names of stores that are known to sell prostheses.  I think Nordstrom's is one that's been mentioned.  The closest Nordstrom's to me is 125 miles away but maybe it's worth the trip. 

The nurse told me not to even think about getting a prosthesis or mast. bra yet. I'm 12 days post-surgery, and she pointed out that there is still some swelling at the mast. incision and under my arm.  Anything that fits there now would not fit there 3 months from now.  Plus, the incision is still tender so it can be irritated by something pressed tight up against it. She said to wait about 6 weeks after surgery before being fitted.

I see you're planning ahead--good idea!

otter 

Anonymous

Hey Otter , yes I'm trying to. After my surgery I will return to work in 3 weeks post-op if I can so it would be more comfortable to have something to wear so that everyone is not looking at the chest to much to know what I mean. Looking for suggestions here. How you doing and what have you decided??

12954

viv

count this is yet another thing you can't exactly plan for. I went for my 1 week check up post surgery-dr said your incision looks fine you can  get the prosthesis now. I think it all depends on your healing.

caaclark

Yes, I think going to a fitter is a must.  I think I waited until about 4 to 6 weeks and that was fine for me.  In the meantime I used the camisole with the fiberfill stuff.

My fitter was great.  She took into account my lifestyle, size, age (40 at the time) , etc.  And, as Otter pointed out, there are many shapes, sizes, types, etc.  I ended up getting one for regular use and then a second one for swimming/running.

I have never been to Nordstroms for mast. bras or prost. but I know they have fitters there.

otter

I know people are going to be looking at me, especially since I'm still going bra-less since my mast.  I'm thinking of getting a custom T-shirt, or maybe putting a sign on my forehead, that says, "OK, it's the left side."  

otter 

Anonymous

Carol, the forms you are using really interest me, I wonder if they are available in canada??