Lumpectomy Lounge....let's talk!

meme2006

Thank you Octogirl!

PontiacPeggy

Meme, YEAH!! So glad for your great Oncotype score. Do you feel like you can breathe now? I'm sorry that you will have to lose your nipple but, to look on the positive side, you do still have your breast. You might inquire about what can be done to create a nipple - haven't I heard tattoos for them? You don't need to decide today. Wait and see how you feel and look. Good luck Wednesday. I'll be in your pocket, too. (I'm going to be tired dancing in everyone's pocket that day). Dance with me. And think positive: clear margins!!!

HUGS!!!

mairew

Hi guys, thanks for everyone who responded.

Actually both BS surgeons said travelling should be no problem. In fact the MD Anderson BS has people who travel within a day or two after surgery since it has patients coming in from all around the world, so it seemed like no big deal.

I am having a Lx with SLNB.

Both BS I have consulted with are in major university/teaching/research hospitals. I think the local BS said MX if Lx fails because my breasts are not big and the MRI showed the mass to be 3.5 cm and it would look too deformed? But I suppose PS could fix that if I wanted.

I tried putting in my diagnosis information. Hope it shows up.

PontiacPeggy

Mairew, You have to make the information on your profile PUBLIC. it seems to trip up everyone. While my actual cancer was 9mm, the BS removed a chunk 5cm x 3cm x 2.5cm. But since it was on the bottom of my breast it really doesn't show (she did a good job). I'm a small A cup. If you want, I'll take a picture and PM you with it so you can see what it looks like. I still think I wouldn't jump in with an Mx if the margins aren't good the first time. Glad both surgeons gave you their blessing for travelling. Have your family find a private pay doctor in case something comes up while you're in Ireland. I can almost guarantee you will find the SLNB site the most annoying thing on earth. EVERYTHING irritates it. It's not that it's painful exactly, just a pain in the you know what. Even after a year and a half I still find some of my clothes rub wrong on it.

Take your pain meds. If you are offered a Valium or anything else, take it! Have lots of ice handy. And relax if you can!

HUGS!!

mairew

thanks PontiacPeggy. My DX is now public.

PontiacPeggy

MaireW, Way to go!!! Isn't it peculiar how you have to do it? Knew you were smart enough And it really does help. You can put in scheduled treatments, too if you want and then modify if necessary.

HUGS!!!

octogirl

Yes, you are right Peggy: there are 3-D tattoos that one can get of nipples that are supposed to be great. Meme, look for posts about Vinny on this board, apparently he is quite good. Based in New Orleans IIRC (somewhere in the South, in any case). I've also heard there is a woman tattoo artist who specializes in them in San Francisco, just a few hours from me. I probably won't bother ever getting one, but apparently they look quite 'real' so, Meme, if that interests you, you should definitely should look into it...

Octogirl

mairew

PontiacPeggy. Thank you ... I put in my surgery info (and then realized I needed to go back into settings and make it public).

ETA. looking at my signature line with my Dx and Surgery listed, makes me sad. I suppose like everyone else here I didn't think this would happen to me, especially at 42.

octogirl

Maire: I am glad you were cleared to travel, but to clarify: my concern with air travel wasn't about recovery from the surgery, it was about the risk of lymphedema. You should know that many women on BCO say that their surgeons never even mentioned lymphedema to them, so unless you asked specifically about that risk the surgeon may have been thinking about recovery more generally. Did you tell her how long the flight was? It does matter. My surgeon not only talked about LE, she referred me to a LE therapist for an evaluation. Both BS and the therapist advised me that I am at moderate risk and advised me since I travel a lot for work that I should wear a compression sleeve (I got a Rx for one) for any flight of five hours or more, as a precaution. If you haven't asked specifically about your risk for lymphedema, please consider doing so. There are a number of threads on this board if you would like to read more.

Good luck with the surgery!

Hugs,

Octogirl

mairew

Hi Octogirl

Yes I did ask my BS specially about lymphedema and getting PT. She said I was extremely low risk.

octogirl

yay for being low risk, Maire!

Octogirl

Molly50

Meme,  are you going to consult with a PS to get a new nipple?  Marie, not to scare you but I had underarm pain mentioned it to both MO and BS and they both were certain that my cancer was contained to my tumor but I was pretty certain my lymph nodes were involved so it was no surprise to me that I had two positive nodes.  What did surprise me was the extensive lvi.  So for me,  I was relieved to have the ability to wrap my head around the idea of mastectomy even though it meant another surgery.  I love and trust my surgeon.  She's really smart,  talented and conservative.  She spent a long time talking through everything with me especially when we found out after my umx that I have a genetic mutation. So I will be having the other breast removed during my reconstruction surgery.  

bluedog

Octogirl, do you know why the BS and PT considered you to be at moderate risk for lymphodema? (And for that matter, Maire, do you know why you're at extremely low risk?) I can't get a handle on this lymphodema thing. Before my surgery, my BS told me she'd refer me to a PT after surgery, but at the post-op visit, she said I didn't need to go. I didn't press her, but was she effectively saying I had no risk? After some reflection and careful reading of these boards, I realized that couldn't possibly be correct. So, when I started rads I asked my RO for a referral. I duly consulted a lymphodema expert who of course confirmed I was at risk and advised me about certain precautions, etc. But she didn't prescribe a sleeve as a prophylactic measure for exercising or flying or anything else. She may have mentioned that my relatively few removed nodes (3) put me at lower risk than someone with a larger number. But she also said she knew someone who'd had only one node out and developed lymphodema. Octo, you've only had one node out, but you're at moderate risk. I'm so confused!!

octogirl

Hi bluedog: the bs and her PA did an assessment before referring me to the therapist, and showed me the results...I will try and dig out the written copy they gave me, but basically IIRC, the assessment took into account number of nodes removed (just having sentinel node removed is definitely lower risk that multiple nodes), countered by my age (older is higher risk, again, if memory serves), weight (being overweight puts one at higher risk, this I definitely remember since I got a kind lecture about weight loss..). Breast size and area to be radiated may also be a factor. I think there were other factors though I can't remember them. My sister, who also had bc, developed lymphedema, and that family history may have been a factor as well, though I can't remember for certain.

My impression is that the research on this topic is minimal at best, so it all may be a crap shoot and I am not sure they really know the factors that increase or reduce risk, although it is pretty clear that being overweight is fairly high on the list.

Therapist then did a more detailed assessment which basically consisted of asking me a bunch of questions about my lifestyle, exercise, etc., and then gave me a series of recommendations. Thus far, I've not had any problems, knock on wood. I haven't flown since my surgery, but I have some trips planned, and have decided to take a series of short hops rather than long flights (possible to do with domestic travel, not possible with going to Europe, obviously). The therapist did say, again FWIW, that each touch down and landing counted as a separate flight (though that seems contrary to what is int the link below). She also said that the scuba diving I do is a good thing, which was nice to hear even though I doubt there is any research on the topic. Many of her recommendations were based on her personal observations in her own practice.

By the way, it was BS who gave the Rx for the sleeve, not the LE therapist.

There is more here, but again, it isn't conclusive:

http://www.breastcancer.org/treatment/lymphedema/r...

Edited to add: I agree it is confusing. But I do think it is important to be aware of, and consider the risk.

Octogirl

mapagail

I had a lumpectomy 11/12/15 and 3 nodes removed. I did not have any drainage tubes. I've had three "incidents" where I wake up and there's a large spot on my sheets where I've drained. Each time this happens, my breast looks kinda sunken, then I guess as it fills up, looks almost normal. From anyone who recognizes this, when it's all over and healed, has the area remained sunken? Hmmm, I know I could have reconstruction done, just wonder if tissue grows or fat takes the place of where the lump was removed. Maybe I'm getting ahead of myself. Every doctor I see says drainage is normal, but wonder what others have experienced. Thanks!

bluedog

Thanks, Octogirl!

PontiacPeggy

Welcome, MaPaGail! Sorry you are here but you'll find us warm, welcoming, comforting, informative and a bit zany. I can't speak to your fluid issues. What fluid I had (never drained like yours) was eventually absorbed. Nothing filled up that "empty" space. But since my cancer was on the underside of the breast, it really doesn't show or look funny other than my downward pointing nipple.

HUGS!!!

HappyHammer

ChiSandy- well, it would be great to see you and hear you so hope you will let me know if you plan on coming this way.

MeMe- SO glad no chemo! Will be sending positive energy and healing mercies your way tomorrow!

HappyHammer

mapagail- That happened to me several times and I was sort of glad since it meant the fluid was draining and didn't need to be drained by doc! Healing mercies your way!

myajames

T-minus 2 days. Feeling like I should do something to memoralize my boob, so I can remember what they looked like before surgery.

Molly50

myajames, what a pretty profile pic! Best wishes on your surgery.

Molly50

Someone just posted this on another thread http://www.fredhutch.org/en/news/center-news/2015/12/breast-cancer-survivorship-guidelines-ASCO.html New Guidelines for breast cancer follow up

PontiacPeggy

MyaJames, I took pictures after my surgery. Didn't think to do it before (but had other problems going on with DH). Take pictures and make a diary. I think you'll find it worthwhile. Update it regularly - both photos and writing. It doesn't matter that no one else will ever see it. And I agree, you are very pretty! Good luck!

HUGS!!

mustlovepoodles

Mapagail, the drainage you're having is probably from a small pocket of serous fluid. Very normal, according to my BS. In my case, there was no separation in the incision where the fluid could come out, so it built up inside where the lumpectomy tissue was removed. I had a large swollen area under my arm as big as a lemon and it made sloshing sounds when I touched--this is called a seroma, very common after breast and abdominal surgeries. Usually, these areas heal on their own and they rarely get infected. Mine, however, had to be tapped several times--I had an enormous amount of fluid in there--and it broke open eventually, draining like a fountain. And then it got infected.

So, I'm telling you all this to give you both some encouragement and some caution. The drainage should stop on its own, sooner or later. You can try wearing a maxi-pad inside your bra to absorb the drainage. If the area turns red, warm, or tender, or if the fluid that comes out changes from yellowish-pink to cloudy and darker you should see your BS.

ChiSandy

I was considered at low risk (2%, for lumpectomy and SNB vs 20% for mastectomy &/or ALND) prior to surgery; but for some unexplained reason they took 2 sentinel and 2 non-sentinel nodes (maybe because my breast was so large). I developed both SNB-site and mammary seromas--the SNB seroma was the size of a lemon or sm. orange and its incision eventually ruptured and I gushed like Old Faithful before they sutured it; sutures holding fine and that seroma is much smaller (about the size of a table grape). The mammary seroma wasn’t even noticeable before radiation--just looked like my normal breast. The lumpectomy incision was glued & steri-stripped and healed perfectly. But radiation made my mammary seroma swell to mammoth proportions. Anyway, I am beginning to show signs of both mild LE and early cording in that arm--no visible swelling, but I can’t touch my thumbnail all the way to the outside bottom of my pinky the way I can on my left hand (although decades of guitar playing have naturally made my left fingers stretch further). And last week, I felt a mildly sore spot (like a mild trigger point or an invisible bruise) on the inside surface of my lower arm below the elbow; this morning, when I stretched to reach for a can on a high shelf I fell a sort of “pulling” in my right arm that I don’t get in the left--and though I can’t palpate any cords or ropiness, the inside of my lower right arm feels sore, like I’d been doing arm curls or pushups. So I wouldn’t be surprised to get LE--if I could beat the 1 in 8 odds and get breast cancer, why should I have been immune to beating the 1 in 50 odds of developing lymphedema? Only hope my “exceptionalism” doesn’t also extend to those 1 in 12 odds of not surviving 15 years and 1 in 10 odds of recurrence. I'm finding statistics to be just numbers. Anything that happens to you is 100%.

PontiacPeggy

ChiSandy. damn. I don't have anything like you do but I find that things "tighten" up on my bad arm. My surgeon said I should keep stretching it regularly (which is what I had been doing but not often enough). Seems strange that after all this time I'd still need to stretch that out but nothing is "normal" about BC and treatment. I sure hope you find yourself not beating those odds - you've done quite enough! And absolutely true. Odds are worthless. It's either 100% or 0%. Hope you things resolve well.

HUGS!

Brutersmom

MaPaGail I had a lot of swelling after surgery but I never drain. The surgeon I had was quite good. You can barely tell I had surgery except that now that my body has reabsorbed the fluid and I finished radiation the surgical area is now a bit sunken and I am smaller on the surgery side. I have been told that some of that may build back up as I exercise and use my arm more. It has been about 5 months and I am learning how to adapt to it. Winter clothes are easier. Not sure what I am going to do come spring and summer.

myajames

Thanks Molly and Pontiac! A journal is a great idea.. Thanks!

PontiacPeggy

MyaJames, I just keep mine in WordPerfect and plop it in DropBox so if I ever need to refer to a specific thing in my treatment I have instant access to it. Try to include how you're feeling about things, exactly what was done, what you anticipate, what medications, what else was going on in your life. All are important. But mostly stay as positive as you can. BC blindsides all of us. We never expect to get it. Good luck!

HUGS!

etnasgrl

Here's a question I haven't thought of until now.

The cancer is in my right breast. I write with my right hand. With the lumpectomy/SNB make it difficult for me to write?
Stupid question I know, but now that my surgery is rapidly approaching, I'm starting to think of all sorts of crazy things! LOL!