Topic: Lumpectomy Lounge....let's talk!

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Feb 19, 2013 07:35PM - edited Feb 25, 2013 10:57PM by ToriGirl

Posted on: Feb 19, 2013 07:35PM - edited Feb 25, 2013 10:57PM by ToriGirl

ToriGirl wrote:

WELCOME TO THE LUMPECTOMY LOUNGE!

I've searched and searched BC.org 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 them.....so 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!

"Sorrow carves the opening for joy later..." Dx 6/4/2010, IDC, 1cm, Stage IIA, 1/11 nodes, ER+/PR+, HER2-
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Feb 19, 2013 07:39PM ToriGirl wrote:

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?

Thanks!

Tori

"Sorrow carves the opening for joy later..." Dx 6/4/2010, IDC, 1cm, Stage IIA, 1/11 nodes, ER+/PR+, HER2-
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Feb 19, 2013 09:11PM GramE wrote:

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

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Feb 21, 2013 08:42PM ElleRusin69 wrote:

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.


Dx ADH 01/27/2013 Surgery 1/23/2013 Lumpectomy: Left Dx 1/27/2013 Dx 1/27/2013, 6cm+, 0/0 nodes
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Feb 23, 2013 07:12AM Katko wrote:

Hello

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,

                                                                     Kat



Dx 2/4/2013, IDC, 2cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/12/2013 Lumpectomy: Right
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Feb 23, 2013 07:32AM april485 wrote:

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.

"Fear has been a huge dictator in my life - so I am trying to stage a coup!" ~ a friend Dx 1/30/2013, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 2/20/2013 Lumpectomy: Left Surgery 3/10/2013 Lumpectomy: Left Radiation Therapy 4/21/2013 3DCRT: Breast Hormonal Therapy 6/19/2013 Aromasin (exemestane) Hormonal Therapy 1/1/2016 Femara (letrozole)
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Feb 23, 2013 07:36AM Annette47 wrote:

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!

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Feb 23, 2013 07:58AM josie123 wrote:

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.

Dx 1/2/2013, DCIS, 1cm, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Surgery 1/8/2013 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Surgery 1/29/2013 Lumpectomy: Right Radiation Therapy 3/5/2013 Breast Hormonal Therapy 3/9/2014
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Feb 23, 2013 01:05PM Katko wrote:

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?

Dx 2/4/2013, IDC, 2cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/12/2013 Lumpectomy: Right
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Feb 23, 2013 03:03PM Annette47 wrote:

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!

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Feb 23, 2013 03:05PM gillyone wrote:

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!!!

Dx 6/5/2009, IDC, 3cm, Stage IIIC, Grade 3, 9/15 nodes, ER-/PR-, HER2-

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