lumpectomy vs mastectomy - why did you choose your route?
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I've been recently diagnosed with DCIS. This process started out for me with a bloody nipple discharge 5 months ago. I've since had mammograms, an ultrasound, a mamo guided core biopsy, an MRI, an MRI breast biopsy, and a lumpectomy. All of that was to find, diagnosis, and decide on treatment for what was supposedly atypical papillary neoplasm. My first mamo/ultrasound showed the first area of concern which was biopsied. I then had an MRI which found a second area of concern which was also biopsied. Both biopsies revealed atypical papillary neoplasms which my surgeon was confident could be easily removed with a lumpectomy. After that surgery when the path report came back... Surprise it was actually DCIS. My surgeon was not happy with the margins from my surgery but 1st sent me for the genetic testing because of great aunts and second cousins having BC. He told me if I was negative he would do another lump to remove a little more tissue and then I could move on to MO for further treatment if necessary. He suggested that a more radical approach may be recommended if I tested positive. Well, I tested negative. Hooray! Except now my surgeon is saying he recommends the more radical approach AKA mast or even BMX. WHAT?? He says the area is large (so are my breasts) and feels like the mast is my best option. I'm so confused. This was all done over the phone and I'm still reeling from the info. He's already had a PS contact me about a consultation for reconstruction. I feel very overwhelmed and very uneducated on the whole process. I've read through this entire thread and am feeling somewhat better hearing everyone else's experiences. I think for me first and foremost is a second opinion. That is the right approach to take I assume. I have to hear someone else tell me the same thing and explain why before I can jump into that.
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Jessimommy-
Welcome to BCO! We're sorry that you find yourself here, but we're glad you've joined us, and we hope you find the support and advice you're looking for.
A second opinion is always a good idea, especially when the course of treatment hasn't been explained well or changes from one thing to another. It IS very overwhelming, and if things aren't being explained well enough, it can be even more so.
Please keep us posted on what you decide!
The Mods
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JessiMom, so sorry you've found yourself in a whirlpool of verbal information. I fully agree with the Mods advice. Please consider seeking 2nd opinion on pathology & surgery. You can send your slides to a nearby NCI cancer center with resident breast pathologists on staff. Also ask your hospital for your writt pathology report. There are red flags, as you implied.
Atypical implies irregularities in cell characteristics. Neoplasms can be either benign, borderline or malignant. Papillary is a rarer architectural pattern. Your pathology is unclear in that pathologists are trained differently. Until your pathology is clear and in writing, I wouldn't entertain further surgery just yet. Possibly why your doctor is inconsistent.
You are not alone. Where you are now, I once was.... Spinning in a whirlwind of information before 4 pathologists reviewed my slides to sort the matter out. Best wishes.
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By the way, conventional DCIS is usually present with papillary lesions. Pure papillary is still confined within the duct, like DCIS. Papillary has several variants, one of which is multicentric, usually located in perimeters of breast. Both DCIS and papillary lesions are not always visible on MRI, something to keep in mind. Good luck
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WeAreConnected, I just read you comment about a second pathology opinion. Is it common to get a second opinion on a lumpectomy? I have to have one of the margins reexcised and I have some questions before I go that route. I was wanting to get a second opinion on the slides. A highly recommended pathologist in my city is at the same location as the pathologist that did original report. How would I go about getting this done?
It's good to read from others that have insight as I'm feeling pretty lost and confused at times as I try to navigate some of these things.
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Diag. with DCIS right breast. Had lumpectomy 12-21 and did not get clear margins. Second lumpectomy 1-18 still unable to get clear margins. Don't know what to do. Try for a third and hope or just have a Bilateral mastectomy with reconstruction. I'm so scared. I meet with my plastic surgeon on Wed. I should add I've had breast implants for 16+ years. Please help any thoughts or words of wisdom. I know it's a personal choice for each of us.
Thanks
Debby
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Hi, Debby,
I am sorry about the problems you are having with margins. I would guess that your particular tissues just have a tendency to fool the surgeons and/ or the screening tools that they have available.
It must really suck to go thru surgery and think you are done, and then get the bad news. Ugh.
I like "low maintenance" and as little interference with my life as possible and to lessen chance of bad news later. I have never been very sentimental about breasts, being kind of a tomboy all my life. I let one go in January cause dcis about half the breast, and recon was not even a second thought for me.
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I did lumpectomy first and told myself that if I didn’t get clear margins I'd do mx. I had close margins, so stuck with my plan and had bmx with DIEP recon. I'm very happy with the results, but it took three revisions to get to "happy".
Two things to consider are will another excision cause disfigurement that you won't be happy with? Also, can you skip radation if you have an mx? I was really happy to skip rads. Some breeze right through them, others have complications during or after rads. Surgery was the lesser of two evils to me, but everybody has there own feelings about which is worse.
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I've been absent since my first post. Deep in thought I guess. After my second surgical opinion it seems I do need the mast after all. The second opinion surgeon (who will now be referred to as my surgeon because she was wonderful) spent two and a half hours with me between herself and her PA. I feel at peace with why it is necessary and finally have a better understanding. I have an appointment tomorrow with a PS to discuss reconstruction options. I'm nervous about what all that entails.
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dfkedder, hi. Sorry about youruncoear margins. For me I would not want to keep doing these surgeries over and hoping they get clear margins. I would opt for a mastectomy. That's what u did for this exact reason. This way your know the took everything out. Good luck.
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JessiMommy,
Glad you are "at peace" after spending time with your surgeon and team. That is the best place to be right now, confident in your team and your plan. That lets you move forward and focus on taking care of yourself during each step of the way. I ended up in a very similar situation and am NED 14 years later. Sending you hugs!
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I plan to do bilateral mastectomy with immediate reconstruction (DCIS grade II right breast lumpectomy 2.5wks ago, er /pr-, genes pending, didn't get clear borders so if they go back they have to take my nipple). I'm relatively young (39) and I'm done having kids. I want to reduce risks as much as possible. Family history. Many reasons for my personal choice. Don't want radiation if I can avoid it. Never know what else is lurking in there. I fear this would be end result anyway and doing it right away would mean better cosmetic result. I know this isn't the decision for everyone but my girls served me well, I breastfed for 8+yrs:)
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I just wanted to thank all of you for your posts. I was just diagnosed in June with DCIS. I have not posted here at all, but have done a lot of reading and research here. My mother had BMX in her 60's. I am 47. My mom was adopted, so we have no idea about her family history. I have also decided on BMX with DIEP reconstruction. My oncologist and I had a long discussion about all of this yesterday. She has been very supportive of my decision. She is planning on checking a node on my right side during surgery. As long as everything has stayed localized, I won't have to have radiation or tamoxifen afterwards. I am feeling very optimistic about this plan of action. For myself, i just knew the anxiety of mammograms every 6 months plus the medication and radiation was not what I wanted. I know we all have our own journey and decisions to make, but I will always be grateful to those that shared their experiences. You have helped me wrap my mind around this in such a healthy way. Just waiting to set my surgery date.
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I was diagnosed with Stage 0, grade 3, hormone-negative DCIS in late June 2017 (a few weeks ago!). I have consulted with 4 breast surgeons and 2 plastic surgeons since then. Research and scheduling and attending appointments was a full time job for 2 weeks. I'm an information hound. For me, the conclusion was based on the second opinions and the size nature of where the cancer is. MRI showed that cancer is running through more than one quadrant of the breast, and that is not reconstructable. Even before the MRI, we knew it was covering about 6 cm of the "ductal highway" and MRI showed it was even more prevalent. Even though my genetics results do not show higher risk of recurrence than the normal population, I am opting for BMX because I am 48, and just want one surgery for me and my family to go through. Want to reduce as much as possible any chance of disease in the unaffected side in 10-20 years when my body will be less able to bounce back from surgery. Also, for symmetry. I am doing DIEP flap reconstruction and just now deciding between some good options of where to get this done. Good luck with your decision. Everyone is so different.
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Holjun, we are similar age and treatment plans. Where are you doing your surgery? Thanks!
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Holjun, we are similar age and treatment plans. Where are you doing your surgery? Thanks!
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kimred- if it's not on your list, be sure to check out NOLA for DIEP flap recon: www.breastcenter.com
Feel free to pm me with any questions. Had mine there in feb
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I was diagnosed with DCIS June. I have chosen to have a bilateral nipple saving mastectomy, my choice is unique to me (as all of yours are too)
I was told at 25 that I was BRCA2 positive so for me this has always been a possibility. I think this is why it was such a easy choice for me because I have been debating it in my head for over 10 years. I am 38 now. My family history is crazy aggressive, I really just want to get this done & past me. If I where to have a lumpectomy my chances of getting a cancer again are 75-80%, if I where to have only one breast removed again same risk will remain in the other breast. These odds are to high a risks for me & like someone else mentioned I'd like to get this surgery behind me while I'm young & fairly healthy in hopes I will heal mentally & phisicall y & be able to get on with my life.
I have two beautiful girls 13 & 10. I fear will one day be faced with this same choice so I am trying to remain as strong & positive as I can. Loosing my breast at 38 is terrifying. I've never had surgery or even a stitch in my body, I will wake up with a huge scar on my stomach & breast...
But I will no longer worry about BC, I wont have to do mamo's every six months anymore & I believe that out weights the loss & scars.
This is my unique experience & thoughts I appreciate you letting me share... Hoping everyone is well in body & mind
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Hi ealga,
I tested positive for DCIS (stage 0) in my left breast mid-May of this year and am recovering from surgery now. I am a small size "A" cup and initially chose a mastectomy with reconstruction, as my BC surgeon said a lumpectomy would have given me 1.5 boobs. However, this all changed when my genetic test came back positive for BRCA2. My BC surgeon is generally conservative about preventive surgeries, but she changed her recommendation to a bilateral mastectomy with reconstruction. I consulted with another BC surgeon for a second opinion and she supported my BC surgeon's recommendation as well. I believe this was the best decision for me in the long run. Wishing you all the best!
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Hi BCWarrior-
Thank you so much for chiming in with your experiences! We hope your recovery goes well!
The Mods
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My diagnosis didn't come as a surprise to me (chalk it up to intuition), but it was to the surgeon who did my biopsy. He pushed for a lumpectomy with radiation. I wanted to keep my options open, so I asked to be referred to the cancer clinic at University of Iowa. My first instinct was mastectomy with reconstruction (immediate preferred, of course). There were too many women in my own family and circle of acquaintances who had lumpectomies and ended up having mastectomies later. My BS also agreed that she should perform a mastectomy based upon the pathology (and lack of information therein). The original excision was at least 5 cm and my BS was concerned that a lump that appeared post-biopsy was too large to simply remove. The MRI she ordered showed extensive DCIS, which just validated both of our suspicions. I admit that I've never been one to have my identity wrapped up in my appearance, so losing a breast was not a concern to me- making certain the DCIS did not evolve was. The surgeons did perform a skin-sparing mastectomy with SNB and immediate reconstruction. According to the pathology, the amount of DCIS present would have left me completely disfigured had they performed a lumpectomy (the amount removed was 7.5 cm). I am very happy that the plastics team was able to do an immediate reconstruction simply for my own convenience. Having to drive the 60 miles to maintain a tissue expander and filling an implant was something I wanted to avoid (I will probably go back to work with three days' paid time and I cannot afford to miss any of my paycheck).
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Hi all, I just had round 3 of TCHP yesterday, 3 down, 3 to go. I'm having a really hard time deciding about surgery. My MO tells me even though I am 46, tumor size was 4cm but has shrunk to 2cm, triple positive, grade3, aggressive tumor -she says I am a candidate for lumpectomy. When I first was diagnosed back in June, I instantly thought get these things off of me I want a mastectomy. But since I had chemo first and have had time to really read and think -I'm as unsure as ever. MO says she thinks (and she understands) people try to cure the cancer with surgery -but it's really the chemo that is going to decide if your cancer is going to come back. And I know recurrence rate is higher for lumpectomy and survival rate is same. I think I'm leaning towards lumpectomy now.. Also because implants scare the heck out of me. If anyone knows of stats that would be helpful in decision making please let me know but I really am starting to think they just don't exist and I just have to be comfortable with my decision.
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hi Emily- I think the key thing you stated is: recurrence rate higher, survival the same. I would have to ask myself if I was prepared to do surgery and chemo all over again with a recurrence that a mx would likely help me avoid. Rads typically aren't an option for a second go-round if you already had it once which takes that treatment option off the table. Also I think there's something around the definition they used for recurrence in that statement...can't remember if it was local recurrence or mets showing up down the line. I can't decide for you obviously but it's definitely something to think about-chemo is an absolute bitch (just my opinion) and I would do anything to up my odds of being able to avoid a do-over of chemo. I would do the BMX with immediate DIEP flap recon again in a heartbeat.
**(Chemo isn't listed below in my profile but I had a year of ABVD and MOPP chemo for Hodgkin's lymphoma previously.)
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Lula73 thank you for your post. You're correct that that is the one thing I keep coming back to. I have two more rounds of chemo to go and it is as you know something I'd rather not do again. But then I think even a Bmx is not a guarantee. I truly can't decide and have a couple more weeks to think about it.
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I'm a stage 3idc, and only 41. My mother was diagnosed with the same a few years ago in her late 60s. This is probably the strangest but most comforting mother daughter bonding experience we have ever had together.
My mother chose a lumpectomy on her right breast and no reconstruction surgery because we lost my father to colon cancer a few years before and... "if the course is permanently closed...there is no need to replace the divot!" I love her sense of humor about it all, her mother had a double mastectomy and no reconstruction! I remember as a child finding her padded bra hanging in the bathroom and wondering when I was going to get one!
I decided to go for a full double mastectomy because of the type of breast cancer that runs in my family has caused several members to require an additional mastectomy in under 5 years when trying to save one breast. That was no longer an option for me once they found additional tumors in both breasts.
I am hoping to be a candidate for a new skin saving mastectomy after I finish chemotherapy. My decision was made to try to restore my original size and shape with minimal recovery time. I urge everyone facing this decision to be aware that breast surgeons have some new nerve saving options also and that gave me a lot of hope I wanted to share. Best of luck on your journey too
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I was diagnosed at 39 in Dec last year with DCIS intermediate grade. I had a lumpectomy with clear margins and am awaiting my pathology report to see if I am ER/PR +ve. I have been identified as moderate risk. My late mother was diagnosed at 53 with BC, (died primary lung Ca) my sister 33yo with IDC. Both my sister and I have been tested for BRACA 1/2 and we are negative. No other gene tests were offered. My surgeon has recommended RAD which I am not keen on due to side effects and chances of it affecting further treatment if I develop another breast Ca in the future. She also discussed all the negative effects of having a MX saying it's an extreme option considering I am only moderate risk. So I am thinking there must be some sort of genetic link which my surgeon and the genetic counsellor have said is possible. My sister and I were diagnosed 4 months apart. My decision to have a PBMX is mostly due to having a strong familial history but also trying to reduce the chance of recurrence as much as I can. I figure I am young and can make a proactive decision now and take some control of my treatment plan. It's such a hard decision and I'm so thankful for all the discussion here which has been a huge help.
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I'm so scared.
Dbl MX. Really bc I don't have the TIME for lumpectomy needle biopsies possible chemo and/or radiation.
I'm literally having my breasts removed instead of watching through less drastic means.
I wish i had that luxury. BC I'm just so scared I'm doing the wrong thing.
Left breast two lumpectomies of micro calcifications.
DCIS Right. Removed 5mm growth of “microcalcification"
There are three border growths (post surgery) and two suspicious areas. If I don't have the DblMX this will be my next ten plus years : Mammogram. Ultrasound. Needle biopsy. DX DCIS. Lumpectomy. Biopsy. Tamoxifen. Repeat until: DX: Stage 1 (IF I'm lucky that is) THEN you can add in chemo and radiation while working full time and going to school for my Bachelor at age of 50.
I. Just. Don't. Have. The. Time.
Just having a hard time letting go of one of my most intimate giving body parts. They functioned well and Love was served.
Thanks for letting me share. I needed to write and read this. Now I can make the phone call. My surgery is Feb 21. Wish me luck.
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Good luck with your surgery next week. I hope it goes smooth for you.
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LadyM...
I so wish you the best and will be thinking of you on the 21. My surgery not scheduled yet... had a bit of trouble getting the MRI scheduled. It's on Friday then will no better what to do and surgery can be scheduled.
Still wavering between Lump or Mas... hoping MRI will help narrow the choices.
Good luck to you! Dustie0 -
dear lady,
I know how you feel! As if there weren’t enough hours in your day already right?!
I live with the suspended state of time this nightmare has left me in too and keeping up with my doctor schedules with testing, treatments, follow up testing ,surgery, chemo or radiation it is very overwhelming and I hope you find all the help you need navigating it all!
I am almost a week out of surprise surgery but it was minor and wound up telling docs a lot about how I was really healing and what the real problem was.
I was not reacting well to new kind of surgical repair glue so they had to go back in and trim up scar lines before live nipple grafts can go back in place when final implants replace spacers. I had plenty of skin to spare there anyway so not sure what my finished size will be yet I’m just glad it’s all me!!
I didn’t think I would qualify for new nipple procedure due to history of calcification and duct scars but they removed and repaired both then set them just above my c section scars to heal vascularature structure and nerves too! I can still feel the same responses they just won’t contract anymore after removal of organs it was attached to that caused this whole mess!!
I’m just angry that I have had years of biopsies and being told it’s all benign and won’t cause cancer back in 2008 now go away before we find a worse place to stick you with biopsies next!! It’s the armpit friends !!boy is that sensitive to a tickle bunny like me! I had a 8cm mass under my pectoral muscle that presented as muscle tissue and felt non traditional as opposed to the golf ball size 3cm under nipple at 105 lbs at 5’7”!! That’s not a sexy look but I guess i pulled it off well because we were convinced it was colon cancer because of family history. Wasted a LOT of time chasing it with nasty diagnostics almost as brutal as chemo treatments were!
Knowing is half the battle so when we know better we do better! I’m sorry you are so overwhelmed and I hope you can find all the help you need for your recovery but I would highly reccomend adding a therapist in to help guide you through side effects and a nurse coordinator to keep your medical scheduile manageable to your ability and need level instead of their convenience!
It’s a marathon not a sprint so try to remember to take time to just experience it any way you feel you need to even if it’s just s party on the bathroom floor for a day it is giving you a whole lot more time to laugh about it after you heal and grow stronger from everything you learn as you do this one day at a time! You are never alone and have lots of help just waiting for you to ask for it. May it find you fast and offer many more good days than bad
Good luck and God Bless!
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