When the margins aren't clear - again.

kaywrite

I posted this in February Surgeries, but reposting here for new/existing DCIS patients who may not visit that forum. Welcome any and all comments or suggestions for the path forward.

POST

Ok, so I just returned from post-op after lumpectomy #2. Here is the good news: still DCIS, still low nuclear grade (grade 1), no invasive carcinoma identified. The bad news: still do not have 100% clean margins. The anterior margin excision remained focally positive for DCIS.

According to my surgeon, because this is anterior, i.e. Closest to the skin, there is literally nothing more to take, except skin. He took all the tissue he could, and cauterized. He does not recommend another surgery as there is nothing to take.

This is a psychological mind-***k, but really does not change two important things: prognosis, which is 4% probability of return within 10 years, with radiation and hormone therapy; and, what needs to happen next, which is meeting with the radiologist within 6-8 weeks.

I told my surgeon quite frankly that considering I was 59 years old and had probably up to 20 years or so left to live anyway, that I was most concerned with the quality of my life spent in those years. In my mind I had reasoned that mastectomy would come next (no issues with that at all) if there were any more problems, that way I could forego radiation and hormonal therapy and physically/financially inconvenient trips to have mammograms every 90 days. Is that how I want to spend what's left of my life? Turns out, I don't have much of a say in that last part. Sure, you could forego rads and meds with MX, but you will always be a cancer patient, and need mammograms, he said.

So here I am, with much to consider. For now, I actually feel at peace with this. Pissed, but I can deal with the facts - I'm never going to waste much energy trying to control the uncontrollable. For now, I'll move on to radiation consultation, and get the BRCA test wheels in motion, just for peace of mind (and which would certainly impact MX consideration).

There are people with much larger problems than mine - which is not to minimalize my own, but to say I remain grateful I've not been dealt worse, by cancer or bylife in general.

LisaK12

We are in very similar situations. I posted a separate thread about my own DCIS story. Everyone is different and there is no "right" decision. But I am leaning toward a double mastectomy with immediate reconstruction. I'm told that I wouldn't need mammograms afterward, just an MRI three years later and every two years after that to check on the implant.

kaywrite

Hi LisaK12 - I am still on the fence about which way to go. I have back to back appointments tomorrow and Friday for Genetics consultation and Radiology consultation. In particular the genetics test will play a large part in my decision - I have a first cousin who is BRCA positive and just underwent both double mastectomy (she did the DIEP flap, which would not be an option for me) and ovarian removal. I have no siblings and my mother is gone from cancer of a different kind. But I do have aunts on both side of the family who have had breast cancer. One, on my father's side, had DCIS and chose a mastectomy with reconstruction. She's alive and well long after. The other aunt, on my mother's side, has been gone too long to ask. All I remember is she had a lumpectomy and radiation, and that the radiation damaged her lungs badly. After many years the other breast had cancer. Jumping through the administrative hoops of scheduling the testing has been a nightmare - more stressful than cancer. I told my surgical oncologist (the only doctor I have so far) that the stress of trying to reach a human being on the phone maze of Emory would kill me long before cancer did.

I agree with you - there is no right answer, just what is personally right.

I'm going to read your story..... Thanks for the note.

LisaK12

Hi Kay. Good luck with your follow-up appointments. Amazing we were both diagnosed and excised around the same time as each other. I am so sorry we are both in this situation but from these boards it seems like we are in good company.

BexSpartan

I'm sort of teetering between all of your results. DCIS with lumpectomy, bad margins, but no second surgery scheduled yet as we are awaiting my DNA testing results as there is a strong family history of BC on both sides. Those results will determine if I have a second lumpectomy or a double mastectomy with reconstruction - two very different paths, and I've been waiting since the 7th to find out. On the upside my surgeon is great and I heal well so recovery from the first surgery was swift, but I'm still not keen to repeat the experience. It still occasionally feels like I have a tangerine coated in Orajel crammed in my armpit. In a way i'd prefer to just have the double mastectomy and be done with it. I'll be 45 in June, and considering my grandmother (who had BC) lived into her early 100's, I'd like treatment to have a concrete end, and not become an ongoing presence in my life.

kaywrite

Bex - I hear you re the ongoing presence. I think about that when deliberating my next move: i.e. rads/hormone therapy vs. mastectomy. My SO says there is no need for MX, due to the grade, size, cellular form, etc. He says that having a MX does not necessarily mean getting all the cancer, that it is impossible in some cases to know what is breast tissue and what is fat, and in my case, with .02mm of focal positive anterior margin (two-tenths of a millimeter) with no tissue left to take (i.e. only skin), that a third surgery is not necessary. He strongly feels my consultations with the RO and MO will help formulate my final decision - which he will respect, either way.

You've got some good genes going for you for sure!

Paco

BexSpartan Same here. DCIS close to chest wall, extremely narrow anterior margin right up to the skin, no further excision necessary. I understand yes, radiation and hormone therapy is to follow. However, when I spoke with the nurse at my consult, she said the RO would let me know IF I need radiation. Maybe she was just being cautious. I would LOVE to skip radiation and go straight to Tamoxifen.

BexSpartan

I think my Surgical Oncologist is going to recomment the opposite, skipping chemo and doing a short course of rads after my second surgery...I did just get my DNA results back - no genetic mutations - a real shocker, since so many women on both sides of my family have had BC. I ahven't had the post-results meeting yet tho as I just found out Friday afternoon. I'm sure to get the call Monday to schedule my follow-up appt. So far my S.O. is the only one I've seen other than the geneticist - we're supposed to put together a team now that I have my results - I don't even have a GP due to a first of the year insurance change, so I'm tracking everything myself until we can find someone decent to take me on.

Paco

fwiw, I have also only seen the surgeon and she seems to leading the treatment plan. I kind of expected the MO to take that role, not sure why. I'll check back on Tuesday with y'all.

Also, I took on a new GP this year after 4 years without one and had my first appointment in January. I made the appointment before my diagnosis. It was weird having results sent to her before even meeting her.

Not having the gene seems like good news! Congrats!

kaywrite

My update: I had genetics testing on Thursday, RO consultation on Friday. So I have the rads simulation scheduled, but pending the genetics results, which would either eliminate or put off radiation. Limbo. The focally positive anterior margin added a week to radiation - for a total of 4 weeks. Joy.

Bex - I too have a new GP, as my 11-year GP suddenly retired in November. Hunting for a new one was stressful - and I didn't even know I had cancer! Anyway, I got a letter from my insurance company last week stating they were ending their relationship with the hospital my new GP works with, effective 4/1. I get to look for ANOTHER GP, among the four or five new ones added to my health care menu in the last two months. Ugh. Like I don't have enough to do. <smh> Healthcare madness.

BexSpartan

Wish you luck with both the GP hunt and the genetic results - positives are rare, so the odds are with you. I'll be back to update after my next follow-up.

kaywrite

B - lots of cancer in general on both sides of my family, but one aunt on each side that had DCIS/lumpectomy/mastectomy. The good news is neither one of them died from cancer itself. One is alive and well, the other passed from a radiation mistake (loss of lung use).

Anyway, a first cousin and I have no living siblings - she decided to test and was shocked to be positive for BRCA 2. We don't know if it is her maternal or paternal side though. About to find out....

kaywrite

Genetic testing cleared me for any gene mutation. On to radiation for me....simulation is on Friday. I've been told 3 weeks of whole breast, with 1.5 of concentrated radiation on the margin. Makes sense, I suppose. I'm ready to move on.

Shaleae

I had my initial lumpectomy (10 CM) on Feb 15th. Got negative margins except only .01 on the anterior margin. My BS said she could go back in or I could opt to just go with rads and tamoxifen. She said that she would only be giving me better odds of no recurrence by a few % but then asked me how do I deal with risk. I said I do NOT take risks. So she said, let's go back in. I have to admit I wasn't happy about another surgery, but I was pleased that they didn't find any IBC, so I focused on counting my blessings. On March 5th I had my second surgery, which my BS said would be a piece of cake. Nurse called with path results today and said we didn't the negative margins we wanted again. Still negative, but only .04. So......if the BS was going after at least 2mm and took at least that much tissue, but only .04 came back negative, then that means we found more DCIS, right? That is what sounds logical to me, however I don't have my appointment until tomorrow and the nurse simply said they would discuss my options with me then. Ugh. This is the problem with being impatient and wanting path results before your appointment. Lesson learned. I am assuming I will have 3 options: Rads and Tamoxifen and roll the dice. Another re-excision (if there is even the tissue there to do it) or Mastectomy. I had a bilateral reduction with the first lumpectomy because they took so much as I was just starting to like my boobs. It has been 4 months of tests, worry, procedures, etc. and I am just so bummed. I do know others have it so much worse and I have told myself that from the beginning, but I was hoping that my work schedule (I travel a lot for work) and my family vacation and all other things were going to work out. I rushed as fast as I could into the second surgery so that I not impact the radiation schedule as it leaves me landlocked and unable to travel. Okay, whining over. Anyone with similar issues or advice. All my research says 2mm is the gold standard, even for DCIS

kaywrite

Shaleae - you have picked the right place to whine! In discussing your journey you could be talking about mine - 4 months of what-the-hell. Two lumpectomies, with still a .02mm dirty anterior margin. My own surgeon stated he would not do another surgery because there was no more tissue left to take. However Johns-Hopkins said they would have done a second surgery and taken skin if necessary. AND I have read recently (in another thread, thanks to the wonderful Beesie) where another doctor found micro-ductal tissue fusing with skin - which would explain why there is no tissue but still an dirty margin. I was trying for a second opinion but got horribly ignored by the clinic I chose. So it was really taking a step back at that point to stop radiation for any longer. For me, I am on to radiation tomorrow. It's so very frustrating and confusing to be dealing with so many new problems, solutions, choices.

I, too, have read the 2mm margin gold standard. I've also read it's just not possible in some cases. My surgeon said we'd deal with that in radiation. The Radiologist agrees. I understand the shock and frustration of not having the margins you want, especially after two surgeries. As everyone here will tell you - talk to your doctor and see if surgery #3 is a good choice, or if either of the other two choices you mention would be best. My surgeon told me that if I decided on mastectomy he would honor my opinion, although it was not his choice. I just decided to do rads/hormone therapy, with vigilant screening - which seemed right for me. I'm mostly at peace with that, but I still get scared.

Shaleae

Kaywrite, I truly appreciate your reply. I guess in a perfect world they would tell me they could try again and just get the 2mm, but I do find it comforting to know that your team feels like they can handle it with the radiation. I did read that somewhere in my research as well. I just feel like we have all of these decisions and it is like we are playing Russian Roulette. I thought when I was initially diagnosed that the treatment plan would be more definitive. But there were choices and they were paralyzing! My PS said all along he thought it was very doubtful we would get clean margins with having to take out 10 centimeters, so right up to the very week of surgery, I was considering changing my mind and just doing a bilateral mx with Diep reconstruction. My BS surgeon was not on the same page and said that if we tried this and failed, at least they would be able to save my nipples. I remember calling the doctor's office on the Monday before my Thursday surgery saying I just wasn't sure. Am I really just trying to save nipples here?? But in the end, I was happy with my decision. I also hate how this impacts those around me. At work and at home. Everyone has been so great and I am so lucky. The guilt I feel is 100% on me. Everyone knows this isn't in my control, but I hate putting people out. I even hate when my Aunt and husband have to sit all day at the hospital waiting for me to get out of surgery. Ugh. Best of luck with everything! Please keep in touch and let me know how radiation goes. I haven't read up much on it because I don't want to put negativity in my mind and a few friends have told me it is no biggy so I chose to believe them! All my best to you Kaywrite!!

kaywrite

Shaleae, Russian roulette and paralyzing are words I can relate to! Probably all of us. And I hear yu re the guilt, too - the time others will take with and for you. But believe me, they want to, and as you said, the guilt is all in our heads. It's normal, I believe. You're not alone, sistah.

I posted elsewhere but will repeat here: my radiation simulation went fine, I'm ok with it, intrigued even with the artwork on the front of my body, even though it looks like a first-grader attacked me with magic markers.

Believe me, everyone in that room knows how I feel about that dirty margin, and they are very reassuring. I know nothing is 100% certain, but I feel good about it. Today. Tomorrow, who knows?

Stay in touch

BexSpartan

Interesting contributions here. My margins were bad on my first lumpectomy 2/7/18, going in for my second 3/23/18, and my surgeon IS taking the skin to eliminate the 'risk' area. Basically putting a 'dart' in the side of my breast if you are familiar with sewing. Having some not-so-secure feelings about how that is going to come out, but it's the plan. Is it that unusual to have the skin taken as well? I was surprised, as the main body of the mass was way back tight against my ribs, and fairly small, so for it to extend so far to reach the skin through a DD seems....odd. Due to begin radiation a month after, but have not yet even spoken to an oncologist, so no duration or schedule yet.

kaywrite

That is interesting, Bex. I brought up the anterior margin again during radiaton simulation to emphasize (as if I haven't been vocal enough lol) my concern about the .02 on my skin. The RO reminded me the SO didn't want to do that due to cosmetic reasons (front and center above breast), which I repeated was less alarming than cancer cells living in my body - and that the size and type of DCIS was a factor. The same resident from SO was there for my RO, so I showed him the thread where a doctor allegedly found microscopic ducts with DCIS infused in skin. Johns-Hopkins also said they would take the skin. Other cancer centers feel confident with just the rads boost.

I am sure there are many factors: size of margin, location, type of cancer, surgical opinion, patient choice.

With all the information, I feel patient choice is the bottom line. I didn't care about a scratch and dent boob (Mountainmama!) but feel ok with the rads boost since rads are recommended anyway. But it's different for everyone.

As Shaeleae and many others have mentioned recently: the decisions we have to make are frightening and mind-boggling.

Has anyone else had skin taken for an anterior margin where no tissue is left to take? Love to hear from you

Shaleae

Hey there Kaywrite! I hope this message finds you feeling positive. I met with both of my surgeons Friday and have decided to have a bilateral mastectomy with Diep Flap reconstruction. It was something I had seriously considered from the beginning so now here we are. My breast surgeon didn’t give me an option for a third try. She said I could opt for rads and tamoxifen or have the mastectomy. She talked a lot about the data on margins and said either decision was reasonable. I am at peace with it now. Just anxious to get on with it. I can can’t waste time second guessing my original decision. I made the best decision I could based on info from my medical team and copious amounts of research. As did you. Now we move forward closer to that light at the end of the at tunnel that we have been working to get to one decision and step at a time. Hope rads are still going well! My best to you

kaywrite

Hi Shaleae - thank you so much for the kind thoughts. I am feeling positive and am ready for rads starting tomorrow. The countdown begins.

I'm glad you feel at peace - I have a cousin who just had the same procedure you've opted for (Diep Flap reconstruction). She is very happy with the results. Her mastectomy was prophylactic (BRCA2 positive) and she went from DD to conservatively small C or maybe even B. She kept her abdomen bound for quite some time, and breasts, too I think. Got her 3D tattoos in December.

None of us wants to be making these choices I know - but having a plan is comforting. I feel like the fallout from the atomic it's-cancer bomb finally settles once we've made a decision - we have room for calm again.

Stay in touch somewhere on the board (is there an April surgery yet?).

Peace and calm.

Shaleae

Hey Kaywrite! How did radiation go? Got the call yesterday that my surgery is May 10th. Good to have the date and now the planning can begin. And now I have a new topic to scour the internet and these boards for! I happened to question my surgeon's nurse practitioner about skin involvement with DCIS as my last iffy margin was the anterior and the surgeon said she took all there was too take. I questioned her on if we should be worried that this could be in the skin since we were so close and that I was concerned since I am having a skin sparing mastectomy. She said they usually see visual signs of skin involvement so they weren't concerned. Not sure if that is how it was explained to you by your original team, but I thought it was worth mentioning that they didn't give it a second thought. But I know you are working very hard on moving on from that nagging "what if" voice. Anyway, I hope today went well and that you have a peaceful and blessed evening!

kaywrite

Hi Shaleae, the first one wasn't fun! They have to take a bunch of X-rays with you frozen in position - in my case with my left arm over my head in the mold they made for me during the simulation. I lost feeling within 10 minutes. One time thing, though. You're sweet for checking.

Yeah on the surgery date! Scary still, but so much better having a fixed date and being on the way. Usually someone starts a surgery post by the month. Some of my favorite gals are in the Febrary surgery group in the DCIS forum. Check it out!

Thanks for the update on your surgeons take on the anterior margin. We all learn from these opinions and I hope it helps others as well. I know it helped me just knowing someone else was wondering about it.

Peace and calm to you, too

SandiBeach57

Hi Kaywrite. It sounds you are gathering good info to help you make the right choice for you. I had DCIS 2x, both without clear margins. The 1st DCIS was hi grade, comedonecrosis, ER+,PR+ and I had a bilateral mastectomy. The 2nd DCIS was the exact same; removed implant, had chest wall radiation and tamoxifen 5 years. Fast forward 10 years, Stage IV...so probably those little cancer buggers had already escaped and just waiting. I did everything and feel comfortable with all my decisions. Please continue annual check ups with Med Onc. Ask for tumor markers (to follow the trend) CBCs, and blood chemistries. No one should ever downplay a breast cancer dx..even DCIS. I will be thinking of you. Meanwhile, continue to have some fun. I just bought a new home and planning a summer cross country camping trip. Feel great.

kaywrite

Sandi - thank you for sharing your story. I think you illustrate to us perfectly how DCIS is not to be taken lightly. If I remember correctly (in all of my frenzied reading of everything DCIS related I could find at first) comedo DCIS is especially aggressive, with a high nuclear grade. As you've probably already seen me say, both my RO and my SO advised me that it would be impossible to get every bit of breast tissue, ever, so, with my particular brand and location of DCIS, a mastectomy would not change things. They remind me, too, that any DCIS can turn invasive. Being watchful will be a part of my life regardless of which I chose, and the end result the same - I had 2/21 radiation treatments yesterday, to be continued Monday. I'm at peace with that.

I do have the tumor markers (yep, technology), will inquire about CBCs et al.

Did your DCIS come back in the same breast? IDC in the same breast? What was your experience with hormone therapy? Is there anything more or different you would do? For example I wish I'd thought to get a second opinion sooner than I did - and I'd advise the new, recently-diagnosed and terrified new patient to be sure to do that. There is so much to think about and so many decisions to make when you hear those words. Anything we have access to now that we didn't in 2006? We understand so much more with each others support.

Girl, I am all about getting on with life. While it can be got. As I get older my capacity for BS gets lower, and being diagnosed with breast cancer most certainly reminded me how important it is to cultivate peace and calm, create beautiful things, surround myself with joyous occasions and people - they change me, I change them. Everyone wins. If you are anywhere near Atlanta (not especially attractive to campers) you must let me know, stop and say hello.

Either way, thinking of you, too. Thank you very much for caring enough to write.

SandiBeach57

Hi Kaywrite,

I had to find my notes from 2006 before I responded! My DCIS was in L breast, scatter pattern about 4.5 cm. Lumpectomy was not an option as the area was too wide. So agreed to bilat mastectomy as R breast had questionable areas. Close margins on L breast were discovered post mastectomies, both anterior (skin side) and chest wall. I also had immediate reconstruction with expanders. My RO wanted radiation to chest wall, but it had to be 4-6 weeks post surgery. The downside was my left expander would have to be removed and the area healed. So the timing sucked. My case was presented to tumor boards at 3 Cancer Center Institutes. Their opinion was no radiation to chest wall as DCIS does not travel to chest wall. The concern was close margins to skin and no excision of skin was recommended.

For someone who is processing the diagnosis, treatments, constant pain and plastic surgery decisions..it was a nightmare. I decided no radiation on top of mastectomies and agreed to skin mammogram after final saline implants and nipple tattoos had healed. Yes, there was enough stretched skin to do this.

Well..guess what? DCIS in skin on top of left implant. So out comes the left implant, then chest wall radiation and Tamoxifen 5 years.

What is theorized is the tumor cells escaped before diagnosis and nothing was picked up in sentinel mode.

What would I do different? Maybe held off immediate reconstruction to make sure margins were okay and then start Tamoxifen earlier (if it was even possible). My case was unusual. Your MDs always evaluate risk vs benefit.

So you are doing your homework, get your second or third opinions and be comfortable that you are a partner in killing this disease. AND go have some fun. I trained and ran a full marathon! Who would have thought...ha.

Keep us posted.

kaywrite

Thank you for filling in the blanks, Sandi - facts help alleviate fear. I was just telling someone else that I use so much of the information I gather here (and elsewhere) to formulate questions for the plethora of doctors I have now - I know they get tired of it, but I will never stop asking. I feel we need all the information we can get, and I want answers when I find fact-based discrepancies, like whether or not DCIS can grow on skin. I feel comfortable with the answers I finally got from my docs re that (and Beesie is a great help here), btw - but it took a minute and lots of anxiety.

I'll be starting the post-menopausal version of Tamoxifen at some point after radiation. I have a cousin in Maine who's been switched to a couple of versions of hormone therapies that she will most likely have to take for life. Her docs tell her the way they'll be treating cancer in 10 years will make what we are going through now seem archaic. Another good reason to carry on.

I exercise regularly, but a marathon is so far out of my wheelhouse. LOL Standing O for all you runners - I'll hold the water out for you