Lumpectomy Lounge....let's talk!

ToriGirl

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!

april485

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

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

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

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.

Thanks

april485

Angielee,

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

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.

{{Hugs}}

april485

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

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

Take care!

Tori

ElleRusin69

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

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,

LaDonna

RMlulu

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 )

ElleRusin69

What is going on with all of these L side breasts??? I just read back thru the thread and many of us have an issue with the L side but yeah good luck on the 28th RMlulu please let's us know how you are 😃happy thoughts any positive energy out to everyone facing more testing, its amazing how I went from being so modest - I mean my 17 yr old daughter I don't think has seen my boobs like ever till about a month ago she was the only one to help me after surgery- now every appointment I'm like hey look at this! Does this look ok to you cause it really hurts still!!! She's like mom cover yourself up!! ( Rolls eyes shakes her head) love & prayers to you all and ill try to keep my shirt on when I meet the oncologist tomorrow I have no idea if they will need to take a look or not. I still really new to this whole world

gillyone

Torigirl - I have not had a breast MRI ever. After my lumpectomy and node removal I had several scans - bone scan, head MRI, and CT scan before starting chemo. After surgery/chemo/rads I saw my oncologist every 3 months and he did CBE each time. Now I am at 6 month appointments, and he always does a CBE. At my yearly PCP visit, I get another CBE and then I have an annual (now) mammogram. So I get looked at 4 times a year and I try and spread out the appointments. To be honest, I don't have a regular schedule for SBEs. I figure I get seen often enough.

CameraKim

I have my lumpectemy next Wednesdsay, 3/5, and I'm anxious to get it over with. Looks like I'm the only person so far on this thread who had neoadjuvant chemo first. This makes me a bit nervous still. I had an aggressive her2 tumor and our thought was to do a mastectomy when I was first diagnosed. The chemo seems to have worked really well though and my tumor shrank by 85%....so we've now decided to do a lumpectomy since the tumor is now very small and hopefully only scar tissue remains.

Just wondering if anyone else has been through a similar ordeal. Seems like most here that opted for lumpectomy had a very small tumor and had it removed right away....

GramE

I had 4 AC chemo for a 6 CM tumor, then 12 weekly Taxol and Herceptin, then lumpectomy.  Clear margins were 1mm, so surgeon went back in to get 2mm margins and all had been good since.  The tumor had shrunk to almost nothing by the time of surgery.   Continued Herceptin for the rest of a year total.   Almost 5 years since DX.   Also, no radiation.  

The only MRI I had was before chemo with dye and breasts hanging down.  Annual mammo, no more onco visits.    

CameraKim

GramE, Thanks for sharing that! I feel a little better now. I too will continue Herceptin for the remainder of the year! I am hoping this lumpectomy is all I need followed by radiatioin.

ElleRusin69

CameraKim good luck next week!!!

I was schedueled for a surgical duct removal due to BND in jan but when the surgeon saw all the "junk" he felt it was best of course to get it all out. I have had no other treatments but meeting with oncologist tomorrow. So I have no idea well a feeling she might want an MRI cause no imaging as of yet revealed all that nastiness that was in there. Hoping for no more surprises but this is life and one just never knows. I've been so lucky thus far compared to so many others and I'm grateful for what I've had to deal with.

GramE

As many have said before, each diagnosis is unique and each of us is unique.   There is no one quick fix for this beast.   With HER2 positive, I feel very fortunate for Herceptin. None of this is easy, but the support of these threads is what helped me most to get through one step at a time.   I send my best thoughts for a good outcome for all.   

april485

My lumpectomy was last Thurs, 2/21 and I am still in enough pain to need pain killers when I get home from work. Is this normal??? It has been 5 days since then. When I had the biopsy, I was fine by day 3. Also, the itching is driving me insane! Ugh!!

savgigi

April, have you checked with your doctor? I had my surgery 2/22 and am not taking pain meds any longer. Ice helps the soreness. I was sore for 3 weeks after my biopsy but this has been easier so far. Other than waiting for the path report, that is.

april485

I called the doctor and she just called me back after I posted that and she said because my lesion was pretty deep that pain for about a week is not uncommon and expected. I worked all day yesterday and today and did not take anything for it at work cause I did not want to be too loopy as I see clients and have a rather detail oriented job. I am used to pain killers as I take them for my knee, but I seem to need more for my boob than I did for a bone on bone knee and that concerned me. I always dose myself properly for my knee and avoid taking any at work. I guess with the lumpectomy, I need more than normal so she told me that it would be fine most likely by Thurs or Friday. I think part of this is psychological cause I am nervous for that path report! Who knows?  Thanks for responding!

crazyride43

CameraKim, I also had neoadjuvant chemo to shrink my tumor, followed by a lumpy and rads.  IYou are not alone!

savgigi

I just got my path report and I am SO relieved. DCIS stage 0, margins clear, nodes clear. I'm waiting for the final word from the RO but should not need more radiation. I think the next step is a visit to a MO for an aromatase inhibitor.

I think I aged 20 years since I learned my mammo was abnormal in mid Jan. I just got 10 of those years back in that single phone call from the BS.

Thank you for all of your help on this board. You have kept me sane over the last weeks.

ajvdb

I am scheduled to have a lumpectomy on March 7. 

I had a core needle biopsy this week monday that came back negative which I am glad for but I noticed from the spot where the needle went it isn't right on the lump so I am not totally convinced that is accurate.  I am wondering how accurate these biopsies are?  They also did a diagnositic mammo that day and that came back saying treatment it recommended.

I am confused and I don't want to be surprised when they take the lump out.

april485

Ajvdb, core needle biopsies are said to be somewhere in the range of 98 - 99% accurate. Hoping that yours was too.

Savgigi! Doing the VERY happy dance with you! CONGRATS! I hope I get the same good news. Still waiting on my path report and won't get it until Tuesday when I have my post-op appointment. She won't give me any reports over the phone, as it is her policy. It just means I have more time to sweat it but I guess I will live. High five on the great news!!

april485

By the way, Savgigi, I noticed they did lymph nodes on you. My doctor did not touch mine. Was there a reason? I see that about half of the people with DCIS have a SNB. I was told I did not need one. Wondering why that is...hmmm.

savgigi

Thanks, April. I hope to be doing a happy dance for you next week!

They did the SNB because my biopsy report showed high grade and there was one area suspicious for microinvasion. At first the BS said no nodes necessary, then we decided to do SNB because of the possible microinvasion. Just to be on the safe side. I was afraid the SNB would be more painful than the lumpectomy but they have both been manageable.

april485

I kind of figured it was your Grade 3 that determined that. Mine is a grade 2 and so she opted not to take any nodes. Glad yours were all clear with no Microinvasion!

ElleRusin69

Congrats Savgigi!!!! Praying everyone gets a clean bill of health!!! So happy for you!!!

ToriGirl

Hey all..

Like to see that the conversations are moving along!

Here's my question...for those of you that have gotten a lumpectomy awhile ago...did any of you do any kind of surgery to correct anything afterwards?  I know some ladies say that the indendation of where the surgery was was bothersome or that the symmetry of their breast was gone...so, some elective surgery was done.  So, I'm just curious...

What about those of you who had radiation?  I finished my radiation in April of 2011...my radiated breast is still smaller from the unaffected one.  My husband says it doesn't bother him in the least...me?  Yep..it kinda does...plus, I still have that "tan"...  

I know that before I was diagnosed, I so badly wanted to get a breast reduction...now I wonder if it's still an option for me...Does anyone know?  Has anyone done that?

Thanks in advance for your input...

Tori