Small breasted Stage One sisters... thoughts?

renbird

Hi small breasted (A cup and below) wonderfuls-

Renbird here. After meeting with 3 surgeons, 2 oncologists, 1 radiation oncologist, and a plastic surgeon... I'm STILL deciding (with 2 weeks left!) whether to get a mastectomy or a lumpectomy on my right breast. (The left one is pretty clear.) CAN YOU HELP?

Have any of my small-breasted sisters had any experience with this?

ABOUT ME:

-I have a 1.3 cm lump, Stage 1A, grade 2, ductal invasive, with DCIS and some calcifications. Hormone + HER2-. Genetic testing negative. My grandmother had breast cancer in her 60s? 70s? but lived to be 82.

-My little 1.3 cm lump is waaay off to the right, at 8 o'clock, by my ribs (the third round of mammos and biopsy was not fun! It's been a month and I'm still a tiny bit sore.)

-I am 48, married, and healthy. (I've never had surgery and I'm a scaredy cat.)

LUMPECTOMY & 5 WEEKS RADIATION THOUGHTS/QUESTIONS FOR YOU:

-My breasts are small, barely an A, and I'm not 100% sure what a lump/rad would do to them.

-The last surgeon I spoke with said "imagine taking a golf ball sized chunk out of a tangerine". She said the nipple would also likely be "off" a bit, and after radiation, maybe point down a bit? Ay! Ay! Ay! Will I be warped?

BUT!

Q: Having a lumpectomy seems like a waaaay easier surgery and recovery than a mastectomy! Right? That's the draw. I'm not really into 5 weeks of rad after surgery either. I just want this to be done. SO that's a negative on the old decision tree. I just want this to be done... I think.

Q: And what is this TATOO you get with rad that I keep hearing about?!? Is it a pin point? Is it permanent?)

Q: Last, how long is each zap? 4 minutes? 2 minutes?

Q: And how do they position us small breasted ladies? Face up, I hear, and you have to inhale deeply and hold your breath to put space between your breast tissue and your chest wall? Is that true? Sounds way more dangerous then face down with breasts dangling.

MASTECTOMY, NO RECONSTRUCTION:

My thinking is: I'm so small now, what am I really trying to save? I wear a bra with a shaped cup and a bit of padding now, so...?

Q: But mastectomy surgery and recovery sound REALLY painful and really hard. Like 6 weeks before you feel kinda like yourself again?

Q: And is it true that you are totally numb in the "eye-shaped bikini area" where your breast used to be? How high up does the numbness go?

Anything else I should consider?

Thanks, ladies! Any advice based on your own experience as a tiny ta-ta'd lady would be helpful.

XO -Renbird

OnTarget

Hi,

I chose to do a BMX with 2 implants.

Some thoughts- it sounds like your doc is saying your boob will be pretty deformed. My surgeon was kind enough to tell me that my boob would be weird looking, and I was worried about having my cancer factories still attached, so I opted for a mastectomy. You have to choose what will make you happiest, and statistically you are as well off doing either from a cancer standpoint.

Easy/Hard- that is totally a personal choice. For me, the difficulty wasn't even part of my decision making, it was about what I felt would make me feel best in the long run. And 6 weeks out of a lifetime is not much. But with MX if you have reconstruction, you can assume that you'll have at least 2 surgeries and not be able to lift for 6 weeks for both. It wasn't a big deal for me, but some people need to get back to life sooner after the mastectomy, or are afraid of surgery as you say. I didn't really feel myself for about 4 weeks after the first surgery. It was somewhat painful, but I found it totally do-able. I was off narcotics within 3 days I think after my BMX. It still hurt for a few weeks, but I just dealt with it. I was totally fine after my exchange surgeries. If you don't think you are the kind of person to "deal with what comes", you may like the lumpectomy option, although radiation can have its own side effects and issues. I do agree that rads sounds much easier and less invasive than a mastectomy, although if you have a family history of heart/lung issues, that could be an issue for you.

Flat- I do not find my totally flat chest appealing. I had an implant get infected (that can happen!), and I have one boob and one weird crater. I walk around with a missing boob and no bra to hide it, but I don't love it. I can't wait to get a new TE put in to start this process over!

Size- you can choose what size you want. I made lemonade from the lemons I was handed and I got bigger boobs! I LOVE having bigger boobs. Shirts fit better, and I feel like my bottom matches my top better.

Tattoos- they are big enough for the technicians to see, but you aren't going to look like a biker chick. Look online for pics.

Numb- I'd say that I'm theoretically numb in my entire breast area, but since I got larger boobs, some of my unaffected skin was pulled in to make up the breasts. I have feeling on the top 1" of my breasts, none anywhere else on the skin. I can feel pressure on my breasts but nothing on the skin. I also have feeling down the middle. It is a bummer to have no nipples though. I believe that even if you have nipple sparing mastectomy, you can't feel them.

moth

I am a 36A and had a lumpectomy. My tumor was on the underside near my chest wall. The surgeon removed 5×4×2 cm slice which seems large but even nude you can't really see a difference between the breasts at first glance.

It's a way easier, less dangerous surgery & that was ultimately the reason for my choice; plus it was the recommended option by my surgeon. Mastectomy has longer recovery & you need to deal with drains in early days.

If you're squeamish, that's something to consider - will you be able to empty your drain?

Rads tattoos are like little moles. Radiation was easy for me. I was back in full time school while I did rads.

Not sure if it's you that was asking in another thread but mastectomy doesn't guarantee skipping rads since if cancer is found in lymph nodes during surgery you'd need rads anyway.

Also, I figured if the lumpectomy wasn't a success for any reason I could always get a mastectomy later.

Rah2464

Renbird I was also small chested. My plastic surgeon called me an "A+" ha She felt like it would be very difficult to obtain a decent cosmetic outcome with a lumpectomy, but she was very willing to try.

My tumor was deep close to the chest wall and I was squeamish about radiation over my heart. Plus, my breasts were very dense and it was difficult to properly image. The only way my cancer was found was by an MRI. I personally didn't want to take a chance and miss anything again.

I had nipple sparing direct to implant. So off with the old on with the new in one surgery. I even went a bit bigger because I decided if i have to do this, I want something up there. The surgery is intensive. Some folks recover quickly, others like me have some issues with scar tissue and nerve regeneration but I can say two years out I am much much better. My sister was diagnosed last year in both breasts and her mastectomy was a two stage process. Her recovery has been much easier so I wonder if I had done it in two stages the stress on my tissues would have been so much less.

You will not have any sensitivity in your nipples unless you are very rare or your PS does some of the newer nerve saving techniques. I have sensation on top, bottom, sides, everywhere except a big dead zone in the middle. There I feel pressure but no skin sensation.

If you are truly undecided Moth is very wise in her statement that you can always get a mastectomy later if the lumpectomy doesn't turn out to be the answer. Perhaps review this option as well with your plastic surgeon so you understand the implications.

renbird

Hi Moth- (love that handle)

Thank you for your response and sharing your experience with me. I hear you, it's like nothing is a guarantee... you may need rad and chemo even if you do a mastectomy. No easy answers, but thank you for helping me sift through this.

-Renbird

renbird

Hi Rah2464-

Thank you for your story and your thoughts. You had nipple sparing surgery... if you don't mind my asking, how does your nipple look? Same as before-ish? I am not planning on having reconstruction, but I may ask for nipple sparing mastectomy. Thoughts? -Renbird

everythingwillbefine

hi,

I just had a left breast mastectomy and minimum pain. I was shocked to find it out. I was same as you before the surgery thinking it would hurt even breathing! But no pain! At least for me. A couple of surgeon told me that there will be no pain if no reconstruction and it turned out to be true.

All I feel is some pressure on my chest but considering I am only 10 days out of the surgery it is completely normal I think considering the big wound. But that is it.

Good luck with your surgery whatever you decide to have.and you will be fine!!

prepmom

Renbird- I also had nipple sparing BMX, so I thought I'd chime in. My nipple looks exactly like it did before. The only difference is that often it is 'on', but this has gotten better with time (I'm one year out on Friday!). Oddly enough my nipples still respond to cold and shower water, but not sexually. I believe that this is the norm. Really weird, but that's how it goes. My super skilled PS even moved my left nipple to match the location of the right one during my exchange from tissue expanders to implants. For awhile you could kind of see the stitching around it (even though the stitches are all internal), but that has almost completely faded.

Hyper skin sensitivity has been my biggest issue, but again it continues to get better with time. It was pretty exhausting for awhile though. My surgeon explained that this most often occurs in thinner women. I think the upside to this is that those who experience this sensitivity get more feeling back. I would never describe myself as numb, but definitely different than before. I would discuss this with your PS prior to surgery so that there are no surprises.

Best wishes!

Rah2464

Renbird - my nipples flattened out a smidge but other than that they look the same and like prepmom, one side is "on" most of the time one side isn't. Couldn't for the life of me tell you why.

Prepmom interesting about the hypersensitivity of the skin I had that. Drove me nuts for quite some time and I am very thin. I lived in my post surgical bra for about six months because I couldn't stand anything else. I also had a lot of cording issues.

renbird

Dear everything will be fine... (nice name!)

Thank you so much for this encouraging message. I am SO happy to hear our recovery has been as positive as it has been. : ) -Ren

renbird

Hi Prepmom-

Thanks so much for your helpful reply. I really appreciate your thoughts. : )

So it sounds like you had nipple sparing with implants, and that you had, ummm... like persistent nipple erection for almost a year, and it was quite sensitive, and wore you out a bit? I'm sorry to hear that. I wonder how common that is.

Hyper skin sensitivity has been my biggest issue, but again it continues to get better with time. It was pretty exhausting for awhile though. My surgeon explained that this most often occurs in thinner women.

I'm now considering mastectomy with "lipo/fat reconstruction", but that sounds controversial too.

https://westcountyplasticsurgeons.wustl.edu/resources/faqs/hot-topics-in-plastic-surgery/is-breast-augmentation-with-my-own-fat-safe.html#:~:text=So%2C%20women%20undergoing%20fat%20transfer,already%20had%20their%20breast%20removed.

Maybe the safest, simplest solution is just to go flat, no nipple.

-Renbird

renbird

Hi again Rah2464-

Thanks for the additional input. It helps! What is... cording? -Ren

Prepmom interesting about the hypersensitivity of the skin I had that. Drove me nuts for quite some time and I am very thin. I lived in my post surgical bra for about six months because I couldn't stand anything else. I also had a lot of cording issues.

edj3

HI there,

I had a lumpectomy plus radiation. I didn't go with an MX because well it seemed a bit of overkill and I can always do that later if needed.

My surgeon did what he called appearance sparing surgery which meant he went in on the side of the nipple (the incision was on the outside and in the same shape. It was very weird at first but now the scar is nearly invisible.

I'll chime in with what others said about what you feel/don't feel. My cancer side nipple just lives in its own world, nothing affects it. So even with an LX you might experience that.

renbird

Hi edj3-

Nice to hear from you again... what was your radiation experience like? They have told me I'd need 4 weeks (20 sessions) and since I am super small breasted, I have extra safety concerns... so little distance between little breast, heart and lungs.

I even hear they have to position you on your back and ask you to hold out your chest to create more space between breast tissue and back wall, while larger breasted women are on their tummies and simply hang. Have you ever heard that? Sound pretty crazy! -Ren

Cowgirl13

renbird, I had the shorter protocol. It was about 19 rounds and was very, very easy. My lumpectomy was on my left side and I had what they call gated or gaited breathing--I held my breath for 20 seconds or so. It was a piece of cake. I'm 11 years out.

renbird

Thank you, Cowgirl-

Good to know, and glad it was pretty kind to you. -Ren

edj3

Hi there, I had 20 sessions which included 5 boosts. Since my cancer was on the left side the risk was a bit higher re lung/heart damage. But I knew there was a good chance I would NOT take tamoxifen so I had no qualms about going through w/ radiation.

Each session is super quick, honestly it takes longer to get undressed and gowned and on the table than to go through radiation. You're correct, I was on my back with my arms above my head gripping little bars so they stayed in the correct position. The rad crew would tell me when to hold my breath and when I could release my breath. I counted because I'm weird like that, and the longest zap was still under 30 seconds. For the first 15 sessions, I had two zaps each time. The 5 boosts were shorter which makes sense--they're boosts to the tumor bed so very targeted.

I'm quite thin and fit so my biggest issue was inhaling too much, so they usually had to tell me to let some air out.

I think upthread you asked about the tattoos--they're really nothing. They look like teeny tiny pinprick size moles on me. I figured my dermatologist would get worried at my next post-melanoma scan since I all of a sudden had like 4 more moles but he knew right away what they were. They also didn't hurt and I'm a big baby about needles.

buttonsmachine

renbird, I am not small breasted, but my experience might be able to help you since I did both a lumpectomy and a mastectomy.

In my personal opinion only, the lumpectomy with radiation was preferable for me, physically, mentally, sexually, and emotionally. After a lumpectomy with radiation, I still looked like myself, felt like myself, and was mostly back to normal physically. I wore the same clothes, could wear a bathing suit, and could "move on" from cancer better. The only thing I had to show for my breast cancer was a tiny scar on my boob, and a tiny scar near my armpit where they took lymph nodes.

The mastectomy is a much bigger surgery, and whether you have reconstruction or not, nerves are cut. The numbness is not great, and there can be functional problems as a result of cutting nerves. For me the mastectomy also led to lasting shoulder instability, and lasting range of motion issues. Fortunately I have relatively little pain day to day, but noticeably more than I did with the lumpectomy.

Looking back on it, and knowing what I know now, I would still choose a lumpectomy with radiation over a mastectomy. I am not trying to sway you one way or another! Everyone must make her own choice. From a cancer perspective, a lumpectomy with radiation and a mastectomy have very similar efficacy.

One thing you may want to look into, if it becomes necessary for you, is lumpectomy repair. That is lower impact that a mastectomy with reconstruction, and you can still have good looking results.

As an aside, when I had radiation, I also laid on my back with my arms above my head. The actual radiation beam only lasts a few seconds, and the machine might move between a couple different angles. I used to get radiated, and then go straight to work all day, and I felt totally fine. You do get the "sunburn" toward the end, but it wasn't bad, and my doctors gave me some cream that really helped.

Best wishes whatever you decide. :-)

edj3

I do need to chime that nerves can be cut during a lumpectomy.

I have areas of numbness on my breast from my LX. I'm sure the numbness is more extensive with an MX, it's a much more invasive and complicated surgery. But don't be shocked if you have an LX and experience numbness.

(Fortunately I'd had that same experience on my abdomen due to the 7 major abdominal surgeries I've had so I knew what it was)

Rah2464

Renbird - cording is a very odd type of scar tissue that can occur from mastectomy surgery. It is thin and has a rope like or cord consistency and some can stretch quite long. I had one cord that kind of went from my foob across my schoulder and down my left arm. They resolve with massage and time mostly. They tend to occur in thinner folks but it is unclear why it happens.

edj3

Also happens with lumpectomies. I've got cording/tethering in my left breast. It's pretty uncomfortable but I still lift weights and run.

buttonsmachine

It is true that there can be some numbness after any surgery. However, I think the differences in numbness between a lumpectomy and a mastectomy are significant. For me, the numbness after the lumpectomy was limited to the SLNB area and resolved over a few weeks. The numbness after the mastectomy was to a much wider area and has been permanent. As for cording, that can also happen after either surgery. I got cording both times, and both times it mostly resolved.

renbird, I remember that when I was trying to make this decision. It was really easy to get bogged down in the fears, and the "what ifs," and the pros and cons of both surgeries. Part of the difficulty is that no one knows how they personally will respond to any treatment. I think you should choose whatever surgery YOU feel most at peace with in your heart of hearts.

edj3

Oh not arguing with you about the effect of an MX re nerves and numbness.

I'm offering my experience, which didn't include numbness at the SLNB area but did and does include the entire left side of my left breast. Nerves aren't like interstate highways, they aren't always where surgeons expect them to be. So it's fair to say the numbness may be little to none, or it may be more extensive even with the LX.

buttonsmachine

Thank you for sharing your experience edj3 - I hope I didn't sound argumentative, because I didn't intend to. :-)

edj3

Nope, didn't take it that way and I for sure wasn't trying to be that way either. What I love about these boards is that we can share to help others. I know I got a lot of help when I was first diagnosed so I hope to return the favor.

renbird

Hi edj3-

Thanks again for all the info! : )

A quick question for you: Was there "other stuff" happening in your lumpectomy breast? (DCIS, random calcifications, cloudiness, dense tissue?) Or was it pretty much the tumor and that's it.

-Renbird

renbird

Hi Buttonsmachine-

Thanks for sharing your story and telling me more about cording. I had not heard about that before. This is why this site and its members are so great! : )

Thanks too for the encouraging words. I am definitely trying to imagine what's best for me over time...

Last night I was trying to think about what to do, in a new way. I imagined if each option (lump vs. mast) were mandated to me.

- If the doctors told me "you need a lumpectomy, 4 weeks of rad, and you'll end up with a tiny messed up breast..." I would have said "Ugh. Gosh. Okay." and stomached it somehow.

- If the doctors told me "We are taking your breast. No choice." ––I would have been SO upset!

Funny, because I am lucky enough to have a "choice" I'm very open to mastectomy to avoid the radiation and possible future scares/biopsies because all the docs have said: "There's a lot going on in your right breast, nothing dangerous now, but things might be hiding in there, or develop over time, even outside the tumor and surrounding DCIS." (There's no activity we can see AT ALL in the left, thank goodness.)

Taking the entire breast seems like a lot less worry and hassle over time, even though the initial recovery is way more dramatic and I'll likely be numb, have a massive scar, and no nipple. I'm not sure I can stomach more biopsies, nor stretching and smooshing my already tiny (and with a lumpectomy, battered) little breast every year into an MRI designed for ladies with breasts twice my size and hoping for the best.

So that's where I'm leaning.

I have my last two appointments this Thurs: one more rad onc and one more plastic surgeon. Have to decide Friday.

-Renbird

renbird, I remember that when I was trying to make this decision. It was really easy to get bogged down in the fears, and the "what ifs," and the pros and cons of both surgeries. Part of the difficulty is that no one knows how they personally will respond to any treatment. I think you should choose whatever surgery YOU feel most at peace with in your heart of hearts.

renbird

PS- Buttonsmachine... again, thank you! : )

Asking you too because it's pertinent: Was there "other stuff" happening in either of your breasts (both the lumpectomy and mastectomy breast? (DCIS, random calcifications, cloudiness, dense tissue?)

Or was it pretty much the tumor and that's it. Thanks again and again! -Renbird

mightlybird01

Hi Renbird, I am (was) below A cup and had a 2.9cm tumor removed on my right, plus sentinel node biopsy (that was negative). I had a surgical biopsy (i.e. lumpectomy), that did not produce clear margins. I then decided to start chemo (as triple negative) and do mastectomy later. So I had all the surgeries. My experience was that the lumpectomy and SN biopsy was a very marginal surgery. My lump was right behind the nipple. My breast was smaller afterwards, but it really was not noticeable. Since my tumor was centered on my breast my nipple looked and felt the same way as before. But since I did not have clear margins I would have needed radiation, which I did not want. So I decided to have a mastectomy.

The mastectomy recovery was much longer than the lumpectomy recovery, but not painfull at all. The main thing I had was skin sensitivity. It lasted for 5 months but really did not bother me much. I am now 10 months out and I must say I don't miss my breast much. In clothes I look the same and my scar looks great, I don't mind looking at it at all. And the numbness I got really used to too. Nothing that bothers me at all.

My thoughts are that if you have DCIS and other stuff going on in your breast, there is a real chance that your surgeon would not get clean margins during lumpectomy. During surgery, it is not possible to see all cancer cells exactly. And surgeons are not supposed to dig around searching for cancer. They cut out a chunk, label the edges with some ink, and then the pathologist inspects the cells under the microscope. If they find any cancer cells close to the edge, they have to go back. SO you may face several surgeries.

It is a very hard decision to make and I struggled a lot with it too. But I can 100% say, I am very happy with the outcome, and also with the fact that I never need any mammogram on my right side anymore (I did not have recon of any kind).

buttonsmachine

renbird, I had an unusual situation. I will give you the short version of what happened to me, just because it is illustrative of how breast cancer and treatment is not always predictable or straightforward.

I noticed the lump in my breast myself. I went to the doctor, got a mammogram, ultrasound, and biopsy. I had dense breast tissue, but there was nothing else going on in the same breast or the opposite breast. It was just this one, 1.5cm lump of IDC that I could feel. At Stage 1A, I was hopeful that it would be very treatable. As it turned out though, my cancer was/is a beast. It has very aggressive features, and is resistant to many treatments. My cancer has recurred locally multiple times in the last four years despite ongoing active treatment.

But more to the point for your situation, and surgery decisions in general: there are plenty of people here who have had local or distant recurrences after a mastectomy, including me. (Which led to my chest wall resection, but that is another story.) Some people do not realize that it is possible to have local and distant recurrences after either a lumpectomy with radiation OR a mastectomy.

Some people do not have a choice in their surgery. But if you do have a choice, my advice is to choose the surgery with the set of consequences that you truly feel most comfortable living with afterwards, day in and day out. We cannot predict what the cancer may or may not get up to one day, no matter what we choose. But I do think that whatever happens down the road, that it is important that we do not regret the treatment choices we have made, and that we still feel as good as possible living our lives.

Anyway, just my two cents. Best wishes to you.

renbird

Hi, Buttonsmachine-

Wow. You have been through so much. I'm so sorry. Thank you for telling me your story, this time in even more detail, and for the gentle reminders to try and decide based on the results I can LIVE BEST WITH over the long haul. Thank you. I truly appreciate it. -Ren