Re-excision v. Mastectomy--HELP!

CRuth

Hi all -- I was diagnosed Dec. 21st with what I now know is Stage 1 DCIS/IDC. ER & PR receptor positive and HER2 positive. As you all know from your own experiences following diagnosis, it's been a whilrwind of appointments, waiting and stresses. I managed to get a lumpectomy scheduled in quickly with an excellent surgeon. She removed the entire IDC tumor (very small, 7 mm) and the margins on the IDC came out clean and negative.  But, the DCIS margins were negative but very "close" (less than .5 mm) and they expect some other DCIS involvement.  My surgeon is recommending a re-excision and then, if we don't get safely negative margins, mastectomy.  My DH and Med. Onc. think that, given the aggresive nature of the cancer cells -- HER2, poorly differentiated, and Grade 3 and my age -- I'm 42 -- we should consider mastectomy now rather than do the re-excision first.  I'm very torn about what to do -- scared of major surgery given the early stage of the cancer, but also worried about the chances of local & systemic recurrence b/c of the aggresive nature of my cancer cells.  I'd love to hear from anyone who might have made or is making a similar decision. Thanks!      

suemed8749

Hi CRuth - so sorry you have to be here. I hope that bc.org will provide you with the support and info you need as you go through all of this.

My dx in Jan. of 2008 was also Her2+, grade 3, although I was 54 at the time and my tumor was 2.2 cm. Had a lumpectomy, then a re-excision after margins were "dirty" in two places (my bs is very dedicated to breast conservation) which turned up another IDC tumor (7mm) and more DCIS (none of which showed up on MRI), so I had a unilateral mastectomy. Path report at that point showed no further cancer, only a few "residual" cells in the lumpectomy cavity.

Of course you are scared of having a mastectomy at age 42. You have to make the best decision for you - and you're doing the right thing by considering the options and getting  variety of opinions.

Sunday marks 4 years since my dx. I wish you all the best - Sue 

CRuth

Thanks Sue -- had a very good meeting with another surgeon today and she talked us through all of the options.  I'm leaning toward mastectomy.  I can't believe that three weeks ago my health was normal, or at least I thought so, and now I'm scheduling breast removal and chemotherapy.

I know I'm lucky because we caught it so early & I have a great prognosis, but I'm pretty scared and overwhelmed right now. So, thank you for answering my post -- it helped.

 I do have one more question if you check back here -- you said you had a single mastectomy -- do you have any thoughts on single v. double in retrospect?

Cyndy

SheChirple

Cyndy:  I am 47.  I had only one small lump found.  I immediately went to bilateral mastectomy for the following reasons:

If I had lumpectomy, I would have to have radiation.  I did not want radiation.

If I had lumpectomy, there was a chance of other tumors that were too small to have been seen. Didn't want to have additional surgery.

So, I went for mastectomy right off the bat.  Post op pathology found no other tumors, no lymph node involvement and clear margins.  In restrospect, I probably would have been just fine with a lumpectomy.  But, I DO NOT REGRET MY DECISION TO HAVE MASTECTOMY. I may be in denial about this "loss" of my breast.  But I am so comfortable with my peace of mind that I do not have to worry, as much, about recurrence, going through mor surgeries, always looking over my shoulder for the next lump.

I also went bilateral for some of the same reasons, and for symetrical reconstruction.

CRuth

SheChirple -- thank you so much for the post, especially the allcaps part!  It's so comforting to know I'm not crazy over-reactive for thinking bilateral mastectomy is the way to go. My med. onc. suggested that I think through your scenario -- how would I feel if I do the mast. and discover the breast tissue was clean? -- if I would be miserable having done it, then maybe we should try re-excision again.  If I would be comfortable, as you are, with having done it anyway, then move forward with the mast.  I think I would fall where you are -- having the peace of mind and not spending the rest of my life on the roller-coaster of testing & waiting and possibly re-treating is worth the "risk" that no more cancer cellls are out there.  I meet with a plastic surgeon on Friday to get more information but having sat with it over the past few days, think we're moving forward.

Thanks again!

 

goldlining

CRuth I had only DCIS and was strongly motivated to keep it that way, so I wanted a bilateral mastectomy from the get go. I was not keen on radiation or on long term monitoring with a history of DCIS. I had to indulge the surgeon's breast-conservation ego with a lumpectomy, but I got my way, sort of, with the mastectomy, except he would only do one. (Yeah, like having one DD and one flat is a good look. At least with bilateral, I could have chosen the size of prosthesis than spend a year with back pain carrying around a huge foob.) I finally got the second one at the same time as a bilateral DIEP.

The original surgeon had insisted DCIS was slow, non-invasive, no rush, nothing to worry about, not even cancer, and X% likely to never become anything more so fully encouraged me to defer the lumpectomy for 6 months because I was too wound up from work stress and wanted to decompress and improve my fitness for surgery if there was no reason to rush. In that time, the DCIS developed from barely, ambiguously, possibly DCIS but not 100% sure in the biopsy to 4.4cm of high grade with negligible margins in the lumpectomy. More DCIS outside the lumpectomy area found in the mastectomy. Unnerving!

Everyone has different feelings about the importance of their breasts so the final decision is very personal. For me, I wasn't panicking, but I felt this was a really good opportunity to reduce my anxieties down the road because I know my mind runs that way, and I need peace of mind more than I need breasts.

CRuth

Wow, what a story goldlining! By the end of that, you must've been so relieved it was over! One big factor playing in with me too is the likelihood of sprinkled DCIS beyond the area already excised in the first lumpectomy.  I'm feeling more & more confident in my decision!  Cyndy

sushanna1

In 2001, I had an excisional biopsy followed by a lumpectomy and a reexcision.  It is a question of your tolerance for risk and future biopsies.  I have had 5 benign biopsies since 2001 and each time I questioned my decision not to have a mastectomy.  That said, I am OK with my decision and was glad that I was able to keep my breast for a while longer.  You might also consider getting a second opinion from another breast surgeon.  Good luck with your decision.

suemed8749

CRuth: I'm glad to see you're getting such great feedback! This is a wonderful site - it really saved my sanity in 2008. You asked about my uni/bi decision - I have not regretted my decision to have a unilateral mastectomy - although that probably would change if I had a recurrence/new primary in my healthy breast. I have a breast exam ever 4 months (oncologist), and an ultrasound/diagnostic mammo/MRI every year. I have a silicone implant (had a lift on the healthy breast), and I'm not perfectly symmetrical, of course, but in a bra, even a swimsuit, it's not noticeable.

It's a tough decision. I will say that I have seldom seen regret from the women here who have chosen bilateral mastectomy.

It is crazy to go from feeling perfectly healthy to suddenly making these life-changing decisions, isn't it? It sounds like you're researching your options and are ready to go ahead with an informed choice.

CRuth

Hi all -- I'm going bilateral mastectomy -- the shaky margins, grade 3, HER2+, getting symmetry, avoiding extensive worrying, the need to do everything I can to prevent my kids ever having to hear "Mom has cancer" again -- all seem to lead me there.  I also had an allergic reaction to the MRI contrast dye so future MRIs will be a hassle at best, not permitted at worst, so I'd be out an important screening tool.  I feel comfortable with my decision after weighing the options and hearing input from you wonderful ladies. So, thank you all for your help! 

CRuth

OK, just posted my "yay, I've made a decision" post to you all and made my way over to the breast reconstruction forums and now I'm terrified and overwhelmed all over again!  Maybe sleep would be a good thing...

CookieMonster

CRut - It seems you've made your decision, but I figured I'd throw my story into the mix as well. I was diagnosed with DCIS in early August. I had a lumpectomy which found 1.1 cm of IDC and 4 of 6 margins were not clear. So we reexcised in September with a SNB. WE ended up with 1 margin still no clear. We chose to do one more lumpectomy and unfortunately still no clear margins. After that, it came down to a mastectomy. I decided to do a Unilateral as my BS said there was no reason to go after the healthy breast, no sign of anything. I'm comfortable with the path that we followed, feel that we did everything possible to save my breast but it wasn't doable. I'm at peace with the process, although it's been a long road. If my BS had pushed for the MX at the beginning I would not have been comfortable with it, but I'm OK with it now.

DCIS is pesky. It likes to spread throughout the breast. My pathology from the MX showed a little bit more DCIS but the margins were well clear so I managed to not need radiation. (I think 4 surgeries are enough for me for now) From here I will be closely monitored (mammo and MRI annually) and will be taking Tamoxifen.

Being at peace with your decision is really the most important thing you can do. I hope you got some peaceful rest last night.

-Judy

CRuth

Thanks Cookie Monster -- I met with a plastic surgeon today and am learning more & more about my options, but I appreciate all the input I can get from those who have made these decisions before me.  Accrding to my med. onc. and my surgeon, the DCIS does seem to be the tricky thing here with regard to margins.  Just left a message with my med. onc. to make sure she is comfrtable with the wait for the DMX before starting chemo.  Also, I picked up a prescription for ambien today, so maybe I can start getting better sleep.  Cyndy

lago

I had a bilateral (diagnosed at age 49) but I didn't really have choices. My tumor was so big (6.5cm combo of IDC & DCIS) and my breast so small (A//B) that lefty had to go. Had an MRI and the right showed some suspicious spots but one that my BS was concerned about. He recommended the BMX since I would have to have that spot biopsied every year. Initially he was saying MX not BMX because he doesn't believe in removing healthy tissue before the MRI.

I know what you mean. I was feeling great, had been working out totally buff an all of a sudden "you got cancer" We all had that WTF moment. I'm almost a year post my final chemo. Reconstruction done except getting tattoos Friday. It does end and you will feel like you again. This unknow is the scariest part.

BTW I'm not an A/B cup anymore. I look pretty hot with my new boobie prizes… and I'm 50.

Newlife4me

It seems you are confident in your decision now and that is the most important thing. Your story if like mine but I decided the other way. It is a very personal decision. I had a very small 4mm IDC and almost 2cm DCIS but it was in one main area. On first surgery, clean margins for IDC but less than 1mm for DCIS. So I had another excision. My husband thought I should have the mastectomy  but I wanted to give the lumpectomy one more try and then do mastectomy if needed. I am glad I did because on the second surgery there was no DCIS at all. They did take out quite a lot of tissue as I am on the large size and no more way found. I feel confident that with the follow up mammograms every 6 months that they will spot any new trouble.

I was also HER+ and young (44). I was ER/PR negative.  I was node negative but did 4 weeks TCH (C=Cytoxan) and then about 10 more does of herceptin. My heart function went from 61 to 47 so stopped the herceptin. I also did radiation. I had my last herceptin in September 2011.

You have to make the right decision for you. I went to what some consider the extreme and did chemo and herceptin because that was right for me. Not everyone would make that decision for a 4mm tumor but I did. 

When I was going through all the tests and decisions and treatment I wondered if there would ever be a day I would not think about BC. But I am only a few months done with treatment and it barely crosses my mind. I was afraid I would never be able to say "I had breast cancer" using that wonderful past tense but now I can.  I will always be vigilant going forward but I won't let it define me.

Best Wishes!

eulabt

In seems that once you are diagnosed your life is never the same. It was very important for me to do everything that I could because of my age. I chose a BMX a year ago at the age of 41. I am very early stage, but did not want to take a chance of it coming back. I know so many people that have gone the lump. route and gone back for the mastectomy or regretted not having one in the first place. If you are getting rid of one, why not the other? Good luck.

lago

eulabt it's all very personal. Someone might want to keep one breast so that will still have sensation. I know my BS as mentioned earlier doesn't like to remove healthy tissue (but will support what ever a woman chooses).

I have a friend that was diagnosed 2 years before me. She had a lumpectomy, no need for chemo. A few months after my diagnosis she got a new primary in the other breast. She did another lumpectomy, still no need for chemo and is now doing Luprin shots and Anastrozole. (She's 49).  She doing just fine.

It's just a hard decision if you actually have a choice.

mcm24

I was diagnosed on Nov. 22 with Invasive Ductal Carcinoma, estrogen and progesterone positive, HER-2 negative, in my right breast. After an MRI of both, a suspicious lesion was found in the left breast. I had an MRI guided needle biopsy, which was benign, but the surgeon wanted to remove the whole lesion to be sure. (If I had had my mind made up at that time to have a double mastectomy, I could have eliminated the surgical biopsy) The surgical biopsy was also benign, but after going through all of these different biopsies on both breasts, and the radioactive seed implant just prior to the surgical biospy, I have decided that I am done with these biopsies. Because I am very small, and the tumor is 1 cm and with the clean margins that they need to have, I would be left with very little breast tissue, and the remaining tissue would have to be radiated, which would shrink it down even further. I was also told that if I had radiation I would not be able to have reconstruction with implants.  I am not a good candidate for the trans flap surgery using my own abdomen tissue and muscle. So I had already decided on a mastectomy of the right breast (the one with cancer), with immediate reconstruction.  It is the hardest decision I have ever made, and I am still agonizing over it, but I am going to have a contralateral mastectomy of my left breast. If I opted not to have that done, I would still need reconstruction on that breast to match the right one. Mammograms on breasts with implants are harder to read, and with my fibrous tissue, they already are hard to read. It was only with an MRI that the suspicious lesion was detected, albeit benign. So they would be watching that breast much closer over the years, and I suspect that anything questionable would be biopsied. Again, I do not want to go through those biopsies ever again. Like many of you, I am still in shock to even have had this diagnosis in the first place, and then to have to make all of these difficult decisions. It is overwhelming. I am scheduled for surgery the first week of February. My specific prayer concerning my diagnosis is that they don't find it in my lymph nodes. They think they have caught it early, but until they biopsy the sentinal node, they do not know if it has spread. I wish you luck in making your decision. It is very difficult. Best wishes on your journey. I am so glad to have found this discussion board of women going through the same issues!

goldlining

I saw the MO today for the first follow-up post DIEP Dec 15. I had a prophylactic mx at the same time so I could do an even bilateral recon rather than just reconstructing the DCIS side. She said the pathology of the prophy was all normal so I was delighted and relieved that I got ahead of it and am out of the BC business, other than a plastic touch-up on the DIEP and manual exams to monitor. Everybody has different priorities and tolerance of probabilities, but this was what I needed. I am so not a watchful-waiter. I am a much better surgical healer than I am a patient patient. The DCIS won the first round (expanding larger than the lumpectomy while I was waiting for my OR date), but I won this one.

inthepink49

I agree with you all. Its a very personal decision. I too had a BS who was so against mast. if lumpectomy was a choice. I do wish she had let me make up my mind. I was not given any time to decide or even given the choice.I left the office the day of diagnosis with a surgical date. I decision I now regret. I have had too many ify things arise through all this. Questionable marginsby the pathologist but BS said she was sure without even checking again to be sure.then node had to be sent out questionable positive but said no just tumor cells.A second 3mm nodule  found that was cancer while doing the lumpectomy. I would have opted for the mast. had I knew there was 2 nodules.My doc insisted no chemo  my oncotype would be 0.Well not so it came back 20 and given I was 48 my onc said should do chemo. had rads also then Hormone therapy.My BS said the pill taking would be piece of cake. Never said anythuing about side effects. Well turns out after 4 kinds of meds my body cannot endure the SE's so i have to stop them and take my chances. i am very upset about this. I have wished since day one that I had a mast. my oncologist told me I could have one but had already had a lumpectomy and had  had enough surgery. Now that I cant take the HT I am really concerned.I will be on edge all the time now worrying from mammo to mammo whether it has come back. I really am not happy with my BS so much more now than before. I am thinking about going to another surgeon just for piece of mind and to have someone look over all my tests and make sure the first BS wasnt too sure of herself.I worry I'm over thinking this but I havent been happy with my breast surgeon from the beginning. She is a cocky so sure of herself surgeon with not so great social skills.problem is shes the head of the breast center.My closest friends think I should just go to someone else and even see if I can have a mast now. these are big decisions and I know since I have stage 1 no node involvement that may be hard to get  a doc to ok.. My insurance said that if the doc was put in for it because I cannot take the HT that they would cover a mast now. Not sure what to do but really having a hard time with this.  Any thoughts and opinions would be so helpful right about now.If you havent been through this like all of us you cant really  know how I feel. I can use anything right about now.

goldlining

((inthepink49))  I want to validate how you feel. I agree with your friends that a referral to a different breast centre is a reasonable thing. I don't know what the "already had a lumpectomy so that's enough surgery" is all about. Unless you have other health issues that make surgery challenging, there are a lot of people that have multiple surgeries. I used the oncologist to wedge my way past the obstinate sole surgeon/head of centre. He very much thought my preference was an overreaction, but once the MO gave me a referral, the BS was in a hurry to get me an even better appointment date with the PS because he gotta be the big man with the best connections. Fortunately, that PS referred me to a different PS at a different centre, and I went in with the "you're doing the second mastectomy as part of this" position but they were happy to do it as it is within the range of reasonable strategies for my condition. I feel so much better without my mind imagining bad things.

lago

inthepink49 you will be watched very closely now. I'm sure they will catch it early if you were to recur or get a new primary. They caught my friends really early. (remember she didn't do chemo either time). BUT if you really want the MX then go ahead and get a 2nd opinion. Personally I feel you are not happy with your current BS so you should check out a new one.

But many surgeons don't have great social skills. Doesn't mean they are giving you bad care. It sounds like you and your current BS don't have a good connection. Find one that's better suited to your personality.

inthepink49

thanks guys

goldlining I should have mentioned I had a total hysterectomy and 3 ankle surgeries in the last few years only to find out right off crutches i had breast cancerso I was glad to only deal with a lumpectomy. Well now I feel I have had time to deal and think I could handle it. My biggest road block is putting my family through yet another few weeks of mom being laid up.  I havent even discussed that I am considering even going to a new surgeon. This is tough for me but so is worrying all the time . I'm just sick of BC.

goldlining

pink, I hear you! In the year between my first and second mx, I was stressed all the time, my heart rate would soar with any exercise, I couldn't sleep through the night without valium, my massage therapist and chiropractor could not get anything to relax, and my cholesterol went up. The first peace I felt was lying on the OR table seeing the team around me, looking at the big light, and thinking I was just one sleep away from not thinking about this 24/7.

CRuth

Hi all -- sorry it's been so long since I posted -- saw 3 PS this week, and went back to my BS for a consultation this week -- also 2 Dr appointments for my kids!  Just emerging with a glass of wine in my hand!

 Inthepink -- Please don't hesitate to get another opinion.  I liked my first BS, but she advised only re-excision after unclear margins on my 1st lumpectomy, so I went for a second opinion and loved the new BS so much, I switched on the spot.  She made me feel very compfortable about questioning whether a MX/Double MX would be ebtter for me than another lumpectomy.  Even if you don't end up doing anything different, just getting another opinion may make you feel better baout the path you are on.  I'm so sorry for all that you've had to cope with over the past few years -- I've only lived with my BS diagnosis for a month and I'm sick of it!  

mcm24 -- sounds like we are on similar paths -- one of the things my current BS talked about was how little breast tissue would be left after another lumpectomy.  At least in discussing things with the PS's I can finally move from an A cup to a B cup (I also am not a candidate for any flap surgery, much as I feel like I could use a tummy tuck!)!  I also just kept thinking of the agony over each MRI/Mammogram and even after them, I wouldn't feel confident I was safe since they missed a large section of DCIS that came out in the lupectomy. Although I don't have a surgery date yet, looks like it will be the beginning of Feb. too.

Eulabt -- how right you are that nothing ever will be the same after a BC diagnosis -- evreything shiftsin your world and I'm sure we can all tilt it back somewhat as we emerge from treatments, but there must be changes that remain no matter what. 

Thanks for everyone's comments -- wishing you all restful and love-filled weekend!  Cyndy

SelenaWolf

And a second- and a third opinion, if that is what you need.  This is about you.  Sure.  In some cases, mastectomy may be overtreatment PHYSICALLY, but you also have to take into account the EMOTIONAL factor.  If you know that you simply could not handle the anxiety later of always wondering and "waiting for the other the shoe to drop" (even if it never does), then that's no way to live either.  If the mastectomy will give you peace-of-mind going forward, then you must do what is right for you and find a surgeon who understands your mindset.

purple32

"already had a lumpectomy so that's enough surgery" is all about. Unless you have other health issues that make surgery challenging...

Aaaah, that is where I am - multiple health  issues and afraid of the most ' minor' surgery so BC really sucks!  My biggest fear is not the cancer itself ( yet  :>) but the surgery (S?)

Moral?  Eat healthy, live healthy ... ya never know !

ttkslee

Hello everyone! I have been on a roller coaster ride since 9/10/12. I am 57 always healthy, and was Dx with DCIS left breast, no invasion, ER-, comedo type with some necrosis. This was all after a routine mammogram which showed micro calcifications. I has a stereotactic BX originally and was told it was "just DCIS" and would need a lumpectomy and maybe rads. Since then, I have had the original lumpectomy with two more rexcisions. The last path report showed one small foci and residual DCIS less than .1cm from inferior margin. Other margins have been good since original lumpectomy. Needless to say, the area is larger than what was originally thought, even after the MRI. My surgeon is suggesting MX since this inferior margin seems to be endless. A second opinion surgeon said he does 3 and even 4 rexcisions routinely. I dread major surgery, but I think I have reached the "fish or cut bait" point. Has anyone else experienced these rexcisions and different opinions? I certainly can identify with CRuth .

CRuth

ttkslee -- I haven't been on this site for a long time, but a notice that there was a new post popped up on my e-mail today, so I think I'm meant to reply to you! I'm sorry you have to go through this -- one of the hardest parts of the whole ordeal is having to make so many decisions that really matter in such a short time and with so much emotion tied in.

I ended up having a double mastectomy in February and am now a comfortable distance away enough to say I have no regrets about it. I did have an IDC component, so that is one difference from you, but ultimately it was the DCIS that we didn't get clean enough margins on. I consulted a second breast surgeon and she felt strongly that since  we hadn't gotten clean margins on the first go-round (I had 14 of 16 slides showing residual DCIS at 1mm), there was a pretty good chance we wouldn't on a second. The patholgy after the mastectomy did show more extensive DCIS, so a reexcision would not have worked after all. Ultimatly, I made my decision because I really wanted to feel I'd done everything I could to protect against recurrence and I felt mastectomy was the best option. It is major surgery and reconstruction is a long recovery, but well worth it in my opinion.  best wishes in making your decisions and going through treatment -- Cyndy

ttkslee

Cyndy..Thank you for responding.  It was good to hear from someone else who had taken the mastectomy route without regret.  My BS is afraid of more residual DCIS also.  It is so upsetting when you are led to believe from the beginning that this will be no big deal; and then just 10 weeks later, I am facing major surgery.  I guess the reason being apparently, DCIS is very unpredictable.  It seems that I will not have to make a decision about the reconstruction, since I am told I do not have enough tissue for the tummy tuck method.  The reconstruction with the expanders is a long ordeal.  But, as tough women, we do what we have to do.  But I feel like I gave it my best shot with 2 rexcisions after the lumpectomy. 

blackcat2012

My heart goes out to you!! I am now facing a bmx surgery due to DCIS with microinvasion and I had an excisional biopsy for that.  I went in last week for a breast specific gamma imaging and it came out that the right breast is full of cancer (hopefully DCIS) and the left breast showed a small mass.  I had an ultrasound guided core biopsy the next day and found out that it is LCIS and my bs recommended a bmx.  I have an appointment for a second opinion next week but I know deep down that I will ultimately need to have a bmx.  I have also decided to not have a reconstruction at this point as I do not like the idea of it at this point but I want to be able to do it at a later date if I change my mind.