Lumpectomy Lounge....let's talk!

Creativevintage

Peggy, I will start on Al after radiation. I am a bit nervous about the upcoming surgery, but only because I have so little time to get ready. I had planned to get the house clean and the grocery shopping done this weekend, but woke up feeling some nausea and fatigue. Probable SE from my herceptin infusion on Friday. Oh well, the house will have to stay messy. I am hiring a friend's teenage daughter to do some light housework and to run errands for me after surgery, so that should help. My friend is a nurse and he is taking me on surgery day and has offered to help out with nursing duties once I am home

octogirl

welcome janejane!! I don't have a lot of advice on the rads question, I am still pending a decision on three week vs six week rads but I am not there yet anyway as I did need chemo and am in the midst of it: you probably know this but if chemo is recommended that comes before rads (and I live out in the boonies where choices of clinical trials aren't really an option.).

I will say that you should take the LE very seriously. My bs did. She and her office evaluated my risk and sent me to a LE therapist for advice, exercises and further evaluation, which was VERY helpful. Frankly, I'd seek a second opinion if the bs wasn't forthcoming with answers, even if she is a muckytymuck (I love my bs, partly because she did great but partly because she treated me like a partner. ).

I could have gone to one of the world's most famous NIH Cancer Centers for my treatment (at UCSF); my insurance plan would have allowed it and I didn't even need a referral (because of the nature of my coverage.) I chose not to in part because of the three hour plus drive to get there, but also because while I figured the top specialists were there if something went wrong and I needed them, I figured the best surgeon in the medium size city only an hours drive from my small town would be able to pay attention to me when I needed it...Your bs may just be very busy. Just a thought.

HUGS!!!!

PontiacPeggy

JanieJane, Welcome. I'm quite confused by your post. They took lymph nodes from your LEFT side where the DCIS was but not the right where the IDC was? That doesn't make sense to me. Perhaps making your profile public would help.

The accepted recommendation is to have radiation when you have an Lx. Of course, if chemo is called for, that will wait. I had full breast radiation but others here have had radiation to just the tumor area. Both seem to work.

You should not be in pain from the SLNB. However, that is a very uncomfortable area. Please do talk with your surgeon ASAP just in case you do have lymphedema. That needs to be taken care immediately. Make sure you are stretching your per your instructions.

Numbness is very normal. There were nerves cut. I didn't particularly notice that on my breast but I did under my arm. That area is still not quite as "feeling" as my "good" side.

Don't let your surgeon skip out on answering your questions. Write them down. And bring your list with you. That often makes them stop for some reason. Is there a NP in the practice? Being a high muckety muck doesn't give them a pass. It is your body and you deserve answers to questions no matter if it seems trivial to her - it doesn't to you! Insist on answers. Block the door. This is not acceptable behavior.

As mentioned, please fill out your profile and make all of it public. It matters. We need the information so people who have similar experiences can answer your questions.

You will find this group very caring, supportive and fun. Sorry you're here but you'll be glad you found us.

HUGS!

Sloan15

welcome janiejane - I can't help you on rads as I'm still in chemo (rads next mo). BUT, I did have weird feelings in my arm. My surgeon said no lymphedema (LE), but the newly trained LE guy wanted me to use a compression sleeve 8 hrs a day. What a difference of opinions. I didn't have any swelling, but 2 and 3 mo after surgery and I still have weird feelings near my elbow and firearm. My MO says it's nerves reconnecting, but is not an expert. Anyway, I had it today, and I get it when I am busy...but no swelling. So I compromise: I wear my sleeve if I am driving long distances or gardening. Otherwise, if it feels weird, I "brush" it lightly with my fingertips in a downward motion with my arm in the air. Then, with arm in air, I do 10 fist pumps to start lymph flowing downward and then elevate my arm when I rest. I'm doing this right now after being busy earlier. Octogirl's advice to seek prof help is good. My professionals weren't helpful, so I might look out of town. There is also a lymphedema thread in this site, but I think most of those ladies have a lot of swelling. Good luck.

Hey, great pictures! Love the hummingbird!

Molly50

Welcome jaineyjane40! Did you have a bilateral lumpectomy? That is a tough decision about radiation. You should check out the most recent couple of radiation threads to get an idea what it is like. Also if you fill in your treatment and diagnosis in your profile and change them to public then it's easier for everyone to respond based on your situation.

Molly50

I got a call this morning that my mom's not doing well and we should come right away. She's stable now but stopped being able to eat on Friday. We expect she won't last more than a week. She looks like she's ready to go.

PontiacPeggy

Molly, that's so hard. Doesn't matter if you've expected it or not. If appropriate, let her know that it's okay to go, that while you will miss her very much, you will be okay. I hope she's in hospice because that is so supportive of the family. If I can help, please PM me. Much love at this difficult time.

HUGS!!!

Molly50

Thank you, Peggy. Yes it is hard. I did get a few minutes alone with her and told her it's OK to go. I told her she would see her sisters, her mom and dad and most importantly my nephew and my sister. I told her Jesus would be there to greet her and it would be a joyous celebration. I also told her it was okay that my step dad would be alright without her. Yes she's been on hospice for almost 3 years. I am exhausted.

octogirl

Hugs Molly! I am so sorry! I gather that she is relatively close by geographically, which is a blessing. We are here for you.

Octogirl

MaggieCat

Molly ... thinking of you and sending strength.

JanieJane... My 2 cents... Step away from the rads decision tree until your Her2 status determined.... makes a difference how the puzzle pieces of treatment come together. Are you getting one of the genetic tests (oncotype, mammaprint, etc) on the tissue? I'd personally want that additional information with both breasts involved ( Stage 0, Stage 1). It is really hard to make good decisions without full information.

PontiacPeggy

Oh, Molly, three years in hospice? Whew. That is definitely draining. No wonder you're exhausted. You're doing everything right. More hugs and love being sent your way.

JanieJane, MaggieCat, has made excellent points. Definitely wait until you know everything - all tests back, etc. BTW, if you haven't read Dr Susan Love's Breast Book, please see if you can get a copy. It will help explain so many things that are involved with breast cancer. I found it invaluable. Make sure to get the edition that just came out, not the one from 2010, if possible (the new one has more recent information but the old one is still very helpful - I have both).

HUGS!!!

bluedog

Thinking of you, Molly.

Molly50

Thank you all. It's amazing how sad and exhausted I feel right now.

PontiacPeggy

Molly, no matter how sick a parent (or spouse) has been and how prepared you are, you really aren't. Part of you knows it is for the best but the other part of you knows how much you'll be missing them. You're so normal.

HUGS!

Sloan15

Oh Molly. I'm sorry. I can see why you are exhausted...and sad.

Sweetmamaj

Molly, ((((HUGS!))) I am so sorry. Of course you're exhausted. And it sounds like your mom is as well. What you told her was so generous and sensitive, and I imagine was also incredibly difficult to say. But you did, and you're an awesome daughter, parent, person, and friend to all of us here. Thinking of you.

Sweetmamaj

jamigb

I am new to this whole cancer thing. Was just diagnosed a month ago and had lumpectomy and lymph node dissection 3 weeks ago. My underarm, side of breast and underside of arm have been getting more sore each day as the feeling has started coming back after surgery. This evening I noticed a ropey kind of spot under my arm that is very painful. It feels like a hard rope that goes from my underarm all the way to the inside of my elbow. Does anyone know what this is or what I should do?

PontiacPeggy

JamiGB, welcome to the best lounge. You'll find us caring, supportive, informative and fun. But we're also sorry you needed to find us.

To me, it sounds like cording. I have no experienced it so can't say. Have you been doing the exercises recommended by your surgeon? And not lifting anything very heavy at all? Give your surgeon a call tomorrow. I think she should see you. The pain is probably from the node incision. That seems to be the most annoying part of a lumpectomy (at least it was for me). It can take up to a year or more for those nerves to heal.

HUGS!!!

Marcy71

Hi! I am 6 days out from lumpectomy and removal of 4 lympnodes on right side. I still have uncomfortable pain that I feel should have subsided by now more than it has. I have major brusising and what looks like skin irritation under my arm which I assume is a result of the dressing. I have pretty much stopped taking pain meds except for bed. Have purchased an underwire free bra and use gauze to add padding between bra and incision sites. I also pretty much have a pillow under my arm almost all the time for comfort. Anything else I can be doing? I was supposed to go back to work tomorrow but thankfully got Dr to give me a few more days. Anyone else still miserable more than a few days after surgery??

jamigb

Thanks Pontiac Peggy....I had never heard of cording but looked it up after you suggested it and it definitely has to be this. My doctor told me not to worry about stretches for now. Looks like I can add physical therapy to my list of after work appointments. Yikes!

Outrunning

Go camping overnight and I have a couple pages to read. Wow

Molly - I'll be thinking of you.

Jamigb I'm right there with you on the cording.

JanieJane I'm thinking your problems might be cording too. My arm hurt many days before the cording became visible. My pain is focused on my inner arm up near my armpit but sometimes runs through my elbow (funny bone area) and down to my wrist and out my pinky. And up the otherway and down to my incision sites. Also my arm goes numb if I sleep on my back.

I finally saw the PT on Thursday. Took two weeks to get an appointment. She gave me a couple of stretches and messaged a bit which helped for a couple days. But with all the moving of stuff and activity of camping my arm is a bit sore tonight.

Rads: Sloan, Molly, Bluedog and me all heading into them soon. Anyone else? Mine starts 10/20 3 weeks whole breast/1 week tumor site. BlueDog and I are even going to the same place and potentially meeting up sometimes. Guess I should check in at the Rads board. But sounds like we'll have our own little rads group here.

Well I still have smelly kids from camp. So gotta go get everyone in the bath/shower. Will try to catch up more later.

ChicagoReader

Just skimming this thread quickly while taking a break from working on a big project for the office (yes, I know it's Sunday evening) and I saw Molly's post about her mother. I'm so sorry to hear her condition has worsened. Even though it's been a long time coming, it must be hard to handle. You'll be in my thoughts.

PontiacPeggy

Marcy, welcome! We're glad you found us but sorry you needed to. We're loving, comforting, supportive and informative. You've just had major surgery even though it was outpatient. You need to rest and give your body a chance to heal. You might want to put ice on your incisions occasionally. I had major bruising for quite sometime, although to be fair, I had major bruising from my biopsies that lasted 2 months. Most likely your SNLB incision will be far more annoying and bothersome than the one on your breast. Everything seems to rub that spot. Try to not lift anything heavier than a gallon of milk with your "bad" arm for a couple more weeks.

Please consider filing out your profile and making it public. That really helps us answer your questions and have the right person providing information.

HUGS!!

PontiacPeggy

JamiGB, you didn't want to have free time anyway, did you? And the PT will definitely be helpful. If you go to an LE PT then you'll get lots of good ways to prevent or handle and LE that might crop up.

Outrunning, I can imagine how stinky everyone is. You know you can do a rads board as well as comment on them here. I found this board was most like me but I've been thankful for the Arimidex board and the rads board when I was doing rads. Just make sure you have a big tube of Aquaphor to slather on your breast (and wear an old undershirt to keep your gucky chest from your clothing).

HUGS!

Outrunning

ItalyChick-Sorry about the insurance. My relatively small association had that problem a couple years ago.

We had One co-worker's wife with a 6-year battle with colon cancer (finally succumbed. Awful. Younger than me with a son only a year older than mine.)

Two cases of BC that I know about.

One kidney transplant where both the donor and recipient were employees.

Countless babies.

The good thing is I know that my BC won't me sole contributor to any hike.

Now we're stuck with CareFirst because every other companies are it too much $.

Outrunning

Peggy. I can't do Aquaphor. It makes me itch. Has lanolin in it I think. I've got to find an alternative.

I had problem with my hands for years and MIL gave me Aquaphor because she had it from getting Rads. Took me ages to figure out that it was making my hands worse not better. Oddly Dove Sensitive also makes me itch. Unfortunately it took me even longer to figure out I had a metal allergy and THAT was the root my my skin issues. All the other things were just irritants on top of the issue of having a Mac laptop with metal case, Mac keyboard at work with metal case etc etc. My happier hands now that I cover or avoid all that.

Okay now I'm really going to the shower. Ya know it's funny that when everyone stinks you notice it less than when one stinks. LOL

Marcy71

Thank you! I didn't realize my info was private. I think I fixed it. Just starting using this discussion board this evening. I will get the hang of it.

PontiacPeggy

Outrunning, I totally get how hard it is to pin down skin allergies. I am sensitive to lanolin but the amount in Aquaphor didn't bother me. I have a nickel allergy. I also seem to be allergic to my own sweat at times. Way back in my 20s or early 30s, I had terrible irritations on my hand. It took me about 5 years to figure out it was the wave set I used to set my hair (yes, I'm that old ). Quit using it and my hand healed up. Thank heavens my Nook has a rubberized back. I don't put my laptop on my lap often and rarely on bare skin. Life is full of little obstacles. Ask your RO what to use.

Marcy, Thank you for making your information public. Now we can REALLY help you!

HUGS!!

Sloan15

outrunnung - are you already on tamoxifen? I still have to find out if I can skip my last chemo due to neuropathy and go into radiation now or not. I'll find out tomorrow. But, yes, I'm heading that direction by Nov. Is there a winter rads board yet? If not, you're right, we can pow wow in here!

Welcome new people- I see several people joined today! Let's see... What helped me after my lumpectomy was a tight genie bra (and I wore a t-shirt UNDER my bra), using my arm for everyday stuff but not lifting anything or raising my arm above my head until doc okayed it, elevating it on a pillow at night, and not sleeping on surgery side. Oh, and napping!

Molly50

I found ice on my alnd incision and on my Lx incision helped the most. The underarm pain lasted for about 4 weeks for me. Welcome Jamie and Marcy.