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Lumpectomy Lounge....let's talk!

torigirl Member Posts: 748


I've searched and searched and couldn't find a specific post just for those of us who have had lumpectomies (unless there was one and it got buried).  So, I thought that it was about time that we had our own place that we can come to...where we can discuss, ask questions, tell stories, seek advice, give comfort, give high fives and do the happy dance...and just feel free to let out our thoughts about the things that we have all gone through (or all currently going through, or about to go through).

Some of you have just had lumpectomies..some of you lumpectomies plus radiation, others have had lumpectomies, chemo and radiation, and still others who have had the lumpectomy, chemo, radiation and hormonal therapy.  We've all got stories...and with those stories we have questions and concerns and this is the place to put we can hear from others that have "been there, done that" and can give us a different perspective on all of it.

Let's reach as many folks as we can...I know that there are many out there that are asking, " Is this normal?  Should this be numb?  How am I supposed to sleep after surgery? When does it get better?  Do I need to call the doctor? Should this feel like this?" How is the "new normal" going to feel?  "How am I going to get through the next mammogram or MRI?"

Maybe some of you need some reassurance, maybe some of you need to know that there are others of us out there that can help...and still maybe some of you just need to scream, "My doctor didn't tell me that!"or "This sucks!" or just some nice "choice" words...  

Don't worry...we get it...we understand it...

Weather you are waiting to have your surgery, just got a lumpectomy last week or you got one years ago...share your knowledge and experiences here...

There is no limit to what we can talk about!  :)

Ready?  GO!



  • torigirl
    torigirl Member Posts: 748

    Okay..I will go first...there was a thread out there awhile back about BSE after a lumpectomy and radiation.  It only got a few responses, so I thought I would post the question here:  

    What is normal to feel after radiation on your radiated breast?

    I know for me, my radiated breast is still so "tough" like...I mean, it's firmer and nothing feels like the side that's not radiated...that one feels "normal"...nice and squishy.  :)

    Anyone have any thoughts?



  • GramE
    GramE Member Posts: 2,234

    I did not have radiation.   Chemo first, then lumpectomy.   6 cm lump, er/pr -, Her2 +++, dx 5/2008.   

  • ElleRusin69
    ElleRusin69 Member Posts: 12

    I am dont think regular protocol was followed in my case my reg PCP was out on maternity leave when I had a physical the 1st week of Jan this yr. I had been having shoulder blade pain and breast pain both of my left side since I'm fibrocystic I've had yearly diagnostic mammo w/ US scheduled at the same x I spaced out going last yr the NP that saw me couldn't tell what she was feeling since I'm so dense etc but she sent me for the diag mammo & us the next wk. night before I had BND on that L side told the tech when I arrived they let the radiologist know she had some extra images done of that left side and a very thorough ultrasound . Both were clear but radiologist warned me to see a surgeon if bleeding continued and it did long story short met with surgeon he thought I should wait but I was freaked out with the bizarre bleeding . Surgery to remove duct that was causing bleeding (how he figured that out I don't know) woke up from surgery in so much pain didn't think I even had a breast left !!! Nurse tried to reassure me that lumpectomies where they take alot of tissue out are generally more painful. Surgeon stopped in said he took a 10 cm x 4 cm x 2 cm tissue sample out that was full of "junk" one duct had a small tumor or papilloma he didn't disturb it though the whole sample was left intact and sent to pathology. Was dx with ADH . Had a rough recovery couldn't get my bra or sports bra on after surgery swelling was incredible repeatedly asked to be ace bandaged they refused "we don't have those here" ?? Went home stayed packed in ice for 4 hrs daughter helped me get up to use bathroom she suggested we check incision . I will never forget look on her face. I was swollen so much into my collarbone left side of my neck my swelling was into my sternum and up under left arm pit. She didn't want me to see it she was trying to get me back I to bed I took one look in mirror as she was helping back into my room and I passed out. Yeah it was an incredibly exciting evening. Came to with 3 paramedics standing over me asking why did you take your compression garment off??? So they had ace bandages at the ER and they got me wrapped nice and tight but I developed such a massive hematoma I had to have surgery 9 days later to evacuate the area. Now I had been back to the surgeons office twice he saw how bad it was no one ever mentioned that it might require drainage. Super Bowl Sunday I started running a fever and thankfully he was not on call one of the senior surgeons was at the hospital told me to come in and he see if he could help get me out of pain. He was livid that no one in his practice had enough sense in there head to attempt to evacuate all that excess blood & fluid. I was taken into the OR within 45 min. He took a culture and I had a staph infection I was told the next day. So its been a month I'm slowly getting back to normal I am very thankful the original surgeon took out everything he thought looked suspicious now my PCP is back from maternity leave she wants me to see the oncologist and a breast surgeon to get a treatment plan started. Since all my imaging was clear I guess they'll have to monitor me by MRI 's ? Anxious to get their input been on estrogen only HRT since total hysterectomy in 97 due to recurrent ovarian cysts and recurrent stage 3 cervical biopsies due to HPV.

  • Katko
    Katko Member Posts: 2


    Mamo showed calcifications..Biopsy showed -dcis-grade 2 stage 0.      

    /estrogen receptors positive-90%      progesterone receptors-positive-80%

     Surgery-Lumpectomy-Path results showed margins mostly clean except for small break through, (<5 mm)now stage T1A? "invasive".now sched for a sentinal biopsy? Any body with similar issues or been through this? ?Second opinions?        Thanks,


  • april485
    april485 Member Posts: 1,983

    Hi! What a great thread!!!! I just had my lumpectomy on Thursday the 21st so still recovering and feeling reasonably well although still a little painful. BS states she feels she got it all out but path report will tell the story. Praying for those all important clean margins! Also worried they might find some invasive cells in there but don't we all worry about that with lumpectomies?

    My initial diagnosis is below in my siggy. My ER+ was >95% and PR+ was 60%. I am being treated at Yale and they also checked my AR (androgen levels) which can determine how I respond to tx. I am highly AR+ as well >90% and apparently this new diagnostic tool has implications for reoccurence and mortality according to a study done at Cambridge in the UK. I was happy to read that I am AR+ as it apparently takes over the ER+ cells and shuts down cancer growth? Something like that anyway.

    So, not sure how long I will be recovering from my lumpectomy but feeling not too bad today (pain is about a 4 out of 10 with pain meds) and now just sweating that path report!

    Anyone else have path results that were unexpected that were a game-changer. I see that kat above had some come back as a micro-invasion which is giving me nightmares right about now since we have the exact same diagnosis.

  • Annette47
    Annette47 Member Posts: 108

    Katko -

    I was diagnosed with a tiny area (<5mm) of DCIS from a mammo which showed calcifications, stereotactic biopsy showed a "small" amount of invasion as well.   ER+ 90% PR+ 90%.    So sounds like a similar diagnosis, but the margins from my lumpectomy were clean.   Because the invasive part was found on the biopsy I had the sentinel node biopsy at the same time as the lumpectomy - all 3 nodes were clean.    As it was explained to me, with such a small amount of invasion, technically the odds of node involvement were about 10%, which is why they check, but my BS felt in my case, the odds were even smaller than that - still though, they don't want to take a chance of missing out on positive nodes even if it was unlikely.

    "Pure" DCIS is always Stage 0, but even just a few invasive cells will automatically bump you up to a Stage 1A (which is what the TIA means in your case).    It doesn't necessarily change the treatment though, especially once clean margins have been obtained and if nodes are negative.   If your margins weren't completely clean, they may want to do a re-excision to take a little more tissue from the not clean area to see if they can get you wider margins.   That would of course depend on how much they already took and how large your breast is.  

    I had the lumpectomy with sentinel node biopsy, am almost done with radiation, and will start Tamoxifen about a month after finishing radiation (my MO wants me to wait so we can be sure what SE's are due to what).   If you have any specific questions about the sentinel node biopsy, I'd be happy to answer them for you!

  • josie123
    josie123 Member Posts: 1,749

    Hello,first off I would like to comment on ElleRusin69 experience I'm so sorry you had such a hard time.That's terrible.

    MY story starts with a history of fibroids since the age of 19.This summer I found a lump and just ignored it until I finally called my OBGYN.It took a month to get in to see him.He knows me very well and I told him to go ahead and stick a needle into it to see if it was a cyst.His whole semester changed when nothing came back into the needle.He was worried.I was sent for a diagnostic mammogram and my whole world seemed to be turned upside down when my Biopsy came back positive for cancer.I was scheduled for surgery- Lumpectomy .Little did I know I would end up not having clear margins and have to have a second lumpectomy 3 weeks later.Surgery went fine but my heart rate went up to 120 after my first dose of Vicoden.So instead of going home I got to get a large dose of Benadryl and got to sleep for about hour or so before they finally sent me home.Finally healing for the second time and getting ready to start my Rads next week.

  • Katko
    Katko Member Posts: 2

    Hi Annette

    Thanks for the reply. on my lumpectomy the margins were clean except where it broke through the wall. Now they will just go right to the sentinal biopsy! I wish they did it at the same time as the lumpectomy. A friend of mine says she had it and it was the most painful thing!! Nice thing to tell me! How was yours? Did they go in through the original lumpectomy site? What does se mean?

  • Annette47
    Annette47 Member Posts: 108

    For the sentinel node biopsy, an hour or two before the procedure, they inject a radioactive tracer into several areas of the breast, which then travels to the nodes and gets them to "light up".    Apparently, the tracer injections can sometimes be painful, but in my case they gave me lidocaine injections (which were not pleasant, but not really painful) and I didn't really feel it.  They then injected a blue dye at the start of the lumpectomy procedure, which also marks the nodes - if you're not also having the lumpectomy at the same time I don't know at what point they might do that - maybe combined with the radioactive one?    The only thing with the blue dye is that I was peeing bright blue for the next 24 hours!

    They did not go in through the same incision - my lumpectomy incision was about a third of the way between my areola and my armpit (closer to the areola) and the incision for my SNB paralelled that one, but was much closer to the armpit.   It defintely took longer to heal than the lumpectomy incision but I wouldn't say it was a big deal.

    Hope this helps!

  • gillyone
    gillyone Member Posts: 495

    ToriGirl - in response to your question about SBE after lumpectomy/rads. Yes - my radiated breast felt very firm after rads whereas the "normal" one was soft and squishy, just as you describe. I am 3+ years out from rads now, and both are soft and squishy!!!

  • LibraryLynn
    LibraryLynn Member Posts: 33

    I go in for my lumpectomy on March 5th. My surgeon went to Haiti the day after I was diagnosed, and I could have had another surgeon, but I have known my surgeon for 30 years now. I have to admit, I'm struggling a bit right now. I'm very lucky...caught early, 2.5mm on the ultrasound, ER/PR+, IDC. They sent my HER to Mayo due to the fact that it was 1+. I'm due for radiation and tamoxifen after sugery.

    I feel confident that it's all good, but I certainly have my moments of fear. I'm a week away from 50, and my father died at 49 from pancreatic cancer. While I definitely know this is much much better, I have a lot of fretful times. I find myself working hard to be positive for everyone else, but in my mind, I'm a bit worn out.

    I appreciate this forum and all of you out there willing to share your stories. Thanks for letting me vent a bit here. It helps.

  • dseko
    dseko Member Posts: 10

    Hi everyone. I had my lumpectomy on Feb 4, 2013. All has gone well. I have been in physical therapy the last two weeks where they are showing me how to do arm exercises to maintain normal range of arm motion and help avoid any lymphedema once I start radiation. 

    I slept on my right side last night for the first time since surgery. I still have a bit of sensitivity around the nipple and my breast feels firm around the incisions, but over all I feel pretty good. All the before precdure things like the dye was painful for me, but I don't have a very high pain tolerance.

    I go back to the RO and MO on Tues. so they can set up my radiation schedule and to find my Oncotype DX results. If the results are as they hope my MO says she would like me to try Arimidrex after radiation is done.

    I was a heavy smoker when diagnosed and have quit - 1 month smoke free on the 27th. I have also change my diet and am learning how to cook and eat things other than fast food and fried foods.

    A little nervous about starting radiation, but the threads here have helped.

  • pupmom
    pupmom Member Posts: 1,032

    I'm a lump + rads gal, almost 1 1/2 years ago, OMG, has it really been that long! Nice to have a place to chat as there are a lot of questions about this procedure.

  • ElleRusin69
    ElleRusin69 Member Posts: 12

    Thanks Josie

    I am doing so much better now.just got approved for Medicaid and received the referral to the oncologist and new breast surgeon. Yeah!! So relieved I can finally get their advice and a treatment plan going. And of course being insured has lifted that 500 lb weight off my back and I can breathe easier. That may have contributed to me having such a rough time constantly stressing about how I was going to pay for all of this. ((( hugs to you all )))

  • savgigi
    savgigi Member Posts: 245

    I had surgery 2/22 and am doing fine. One sentinal node removed and the surgeon said she thinks she got a good margin. Anxiously waiting for path report. Received intraop radiation, so am praying for clean margins and node so that will be all the radiation I will need.

  • april485
    april485 Member Posts: 1,983

    Savgigi, you are the first person I read about having the intraop rads. I hope that this is all you need to. We are both waiting to hear those words about the path report. My lumpectomy was the day before yours. Fingers crossed for us both!

    LibraryLynn, hoping all goes well with your surgery!

    Elle, so happy you now have the insurance beast off of your mind. That would weigh heavily!

    Dseko, I can relate to the smoking issue. I am trying hard to quit as we speak. My BS wants me to be smoke free before starting rads for sure. I have the patch and have used it and ended up ripping it off my arm and smoking...sigh. The stress got the better of me. I put one on this morning and so far, so good today. But, I have been out of bed for only 2.5 hours so the rest of the day is stretching in front of me. I already made the other lifestyle changes with diet and exercise about two years ago and have lost over 80 lbs in two years on WW's online. I exercise every day and I eat a "mostly" whole foods diet although I do cave and eat sugar on occasion and also can't seem to quit my cheese I never was big on fast food so that was not an issue for me. I bought a book yesterday for my e-reader called "Anticancer-A new way of life" and it is an eye-opener so far and I have only read the first 4 chapters!

    This was so out of the blue and I am still having a hard time wrapping my mind around this diagnosis. It is so good to know that others are here sharing my same issues and can help me to cope!

  • savgigi
    savgigi Member Posts: 245

    April, it was totally out of the blue for me too. They found microcalcs on a routine mammo. Hearing that was abnormal was like a kick in the gut and something told me it would not turn out ok. But things are looking up. Waiting is the hardest thing and it feels like the waiting is coming to a close. I pray for good news for both of us.

  • savgigi
    savgigi Member Posts: 245

    Has anyone had numbness after a lumpectomy? I have a large area that is numb and am trying to figure out if it is from the surgery or radiation.

  • Annette47
    Annette47 Member Posts: 108

    Savgigi -  

    Yes, I had a lot of numbness after my surgery, but it is gradually fading.  At first it was the whole area around both incisions (they were both on the same quadrant) and up through my armpit but it is getting smaller and smaller - now it's mostly just around the incisions.

    I've also had 2 c-sections and have had residual numbness around the scar for YEARS, so I think it's pretty common anytime nerves have been severed.

  • april485
    april485 Member Posts: 1,983

    I agree with Annette. I had 2 C-Sections and had numbness for years around the area. I think it comes with the territory. When they cut, they sever nerves so it can stay that way for a long time or sometimes forever. One little corner of my C-section scar still has no feeling at all and the surgery was in 1980! The rest has slowly come back over the years and occasionally still itches!

  • Annette47
    Annette47 Member Posts: 108

    April - you're 20 years ahead of me with the C-section scars (my older DD was born in 2000) and I was JUST wondering the other day if the numbness and itching would ever go away ... guess not, huh?   Glad to hear that it's normal!

  • savgigi
    savgigi Member Posts: 245

    Thanks, Annette and April. The surgeon's office called right after I posted and the nurse said the numbness is common because of the tissue removed and nerves cut. Feeling may return or it may stay numb. My cancer was deep and almost at my chest wall so the surgeon had to go deep for it.

  • angielee
    angielee Member Posts: 2

    Hello Ladies,

    What a great thread.

    I have a question as I am new to this and totally confused.  I had an excisional biopsy on 2/15/13.  The pathology showed DCIS, grade 2, ER+/PR+ 

    Where I am confused is the BS said she needs to go back in to "clean it up", the pathology report shows

    Anterior 0.2mm

    Posterior 0.1mm

    Superior 0.2mm

    Inferior 0.1mm

    Lateral 0.1mm

    Medial Negative

    So with DCIS i thought it was all contained in the ducts? If I had an entire mass removed and they found those cells inside the mass, how did they get outside the mass??? I would think with DCIS if the entire mass was removed then the margins should be clear??

    So confused.


  • april485
    april485 Member Posts: 1,983


    I think what your surgeon means is that you have some DCIS cells in your margins around where she cut out your lesion. In order to get clean margins, they will have to go back in and "clean it up" by taking more of your breast off (and mm are very tiny) because when a surgeon goes in to remove calcifications, they can't really see them like they can when someone has a lump. Therefore they are really operating blindly with the films they have so it is sometimes necessary to go back in.

    I had a lumpectomy on 2/21 and I am waiting for the path report to see if I am done or if she will have to do "cleanup" of the margins as well. About 20% of the time, this is necessary. It does not mean that it spread or that it is invasive. It just means they did not get it all out which is what you absolutely want before starting tx! It is still contained in the ducts but there is just still some in there. It is a very tiny amount based on what you wrote here as mm are itty bitty.

    Best to you and I hope that helps!

  • angielee
    angielee Member Posts: 2

    Thank you April485!  Best to you as well, we seem to be in a similar boat so if you ever need anyone to talk to I am here.


  • april485
    april485 Member Posts: 1,983

    You are most welcome angielee. Calcs are microscopic and sometimes the lesion is a little bigger or smaller than it appeared on your mammo/us/mri films so that is why this happens on occasion. The larger the margins, the better it is for you moving forward! I am hoping for nice clean and big margins! So, this time when your BS goes in, she knows how much more to "shave" off your lesion area and you will likely have excellent margins after this. Keeping fingers crossed that is the case for you but sometimes (rarely) there is even a third re-excision necessary to achieve this! Best of luck!

  • torigirl
    torigirl Member Posts: 748

    Wow!  I had to be gone for awhile and when I got back I see how many people have responded already!  Thank you!  This is friggin' fantastic to see those of you coming forward to give advice to the newbies and tell us your experiences.

    gillyone-thanks for giving me something to look forward to...if I may ask, is it back to "normal" as far as your BSE?  Or do you just leave that for your visits with your GP or onc?  Are you getting regular MRIs too?

    Is anyone getting MRIs for follow-up or just mammograms?  Is anyone doing thermography in place of mammograms?  

    As for me...I had a lumpectomy on my right breast in June of 2010...had one node positive out of 11, so did 6 treatments of chemo and 6 weeks of radiation...I am currently on generic Arimidex and actually doing really well...well, except for the weight that I put on during treatment and can get to budge...  :(

    I have a mammogram and MRI coming up and I struggle with the "fear" of those gosh, darn tests...I do so well until it comes close to the tests and then I freak myself out again...Plus, they are both a little late because I've been struggling with insurance issues...(that's a whole other mess)

    At any glad to see you all here...hope to see you come back and chat and see more come to join the discussion...

    Take care!


  • ElleRusin69
    ElleRusin69 Member Posts: 12

    Hey Tori

    I have been told by my PCP that an MRI is going to be my new best friend . I had one about 6 yrs ago with contrast and my breasts hanging down in those coils Made me feel like a damn dairy cow. I am hoping I can wait a few more weeks as I am still swollen and the breast that had the lumpectomy it needs constant support if I let it go even for 30 seconds the pulling on my incision is intense . I've been walking around with my left arm cradling it like I'm carrying the football in the last 10 sec of play at the Super Bowl . (if I don't find some humor in this I won't get thru it so sorry . ) And funny I don't get claustrophobic when I'm face down but face up omg I need to be sedated. I start crying like a baby doesn't make any sense but I'm just weird I guess??

  • FilterLady
    FilterLady Member Posts: 74

    What a great topic.  I'm a little over a year out from rads and about a year and a half from my lumpectomy.  I can't believe that it's been that long.  Wow....never thought the treatments would end when I started with #1 but it was great counting down and I was so glad to ring that bell at the end of my rads.  My DH even made me a pink bell with my last rads treatment date on it....he's the best.

    My left breast is much softer and more squishy than my right and I still get "twinges" every now and then but have been told it's completely normal.  I still see my medical oncologist every 4 months as well as my radiation oncologist.  I've been NED since the end of treatment and expect it to stay that way.

    I had my first mammo post diagnosis last September and didn't realize how much I (and my DH) feared that first one.  I was fine until I stepped in front of the machine...then I had a meltdown.  After a few minutes to compose myself, the mammo was done and it was all clear!  I'll have yearly mammo on both breast and 6 month mammo on left breast. 

    It's been a journey that terrified me at the beginning but it opened my eyes to what is really important.  I pray for all of the brave women (and men) on these boards....they have inspired and encouraged me more than they will ever know.

    I'm praying for good results for those that are still waiting and comfort to those that will have surgery and/or treatments.

    God bless y'all,


  • rmlulu
    rmlulu Member Posts: 1,499

    ElleRusin69- I sure hope MRIs are BFF. We'll see 2/28 post lx MRI to see if all clear for rads or if not more surgery. I'm wondering how my now not D left breast is going to let it all hang down and not hurt or separate. T was at high noon deep by chest wall. There may be something at 2 which they thought was an over read but lx path report found 2 Ts- clear margins&7 nodes. SNB incision is still angry so I'm not sharing the football either.

    As long as I'm face down MRI w contrast is doable.

    Wondering if positive will they do another lx same quadrant or mx. Just want to be c free!

    Focus on healing 2/28 will be here soon enough :))