.5mm margin After Mastectomy

jerseyDaddy

Hello everyone,
I've been scouring google journals search for info but based on what I've seen in these boards, thought I'd ask all you experts here.

My wife recently had a double mastectomy 3 weeks ago with immediate reconstruction using expanders. The final pathology report indicated 2 tumors. IDC removed with good margins. However, it also showed DCIS with close anterior margin < 0.5mm

We met with the oncologist for the first time yesterday and at first he seemed concerned about the margin. He asked "what did the breast surgeon say about the margin?" and "is she going back in?" then "did the surgeon talk about radiation?"

He then got on the phone with another Dr with I found out is a radiation oncologist at the hospital and asked us to go to the exam room. He came in a few minutes later and very quickly announced "no radiation" and that he's "99.99% sure my wife is cured." Nevertheless, he said he would order an Oncotype test (which I thought would have been standard after the surgery) and that my wife would likely go on Tamoxifen after the results of the Oncotype test are received in 3 weeks.

My gut is telling me things don't seem right. He initially keyed in on the close margin, then later dismissed. From what I've read < 0.5mm is a very close margin, especially since it doesn't say exactly what the margin is; just less that 0.5mm.

From what I've read, radiation is given after lumpectomy, especially with close margins, but I'm not sure about mastectomy.

I did find the following study discussing the role of radiation post-mastectomy. Seems relapses in the study were with women with close margins < 1mm.
http://www.hindawi.com/journals/ijso/2012/423520/

So I'm curious about your thoughts on this? I'm trying to do my best to advocate for my wife.
Questions running through my head are..
Should push for radiation? Get a second opinion? Would Tamoxifen be enough?
Should we talk breast surgeon about trying to get a better margin (if this is possible with mastectomy)

Thank you very much in advance

barbe1958

Obviously none of us are doctors. My feelings are; DCIS only grows in the ducts of the breast. IDC on the other hand grows within the breast. If the IDC had good margins that's great. As for the DCIS...I'm a bit confused, how could DCIS within a duct have close margins to tissue left behind? Did the duct get severed? Or was the duct that was taken out so close to the margin? Think of slicing moldy cheese. You can get the mold off the surface, but you don't know if spores are left behind. That's kind of the IDC analogy. But now think of a pot of spaghetti. If you take all the spaghetti out (ducts), what's left behind?

I hope you don't think I'm taking your question lightly, but the fact that two doctors have said no means a lot. I just finished radiation for stage IV cancer and it's not an easy treatment. I didn't get radiation after my initial double mastectomy but who knows if it would have kept me from progressing. I got 7 years with no treatment except surgery. That's pretty good. If I'd done chemo and rads I would be just as happy getting 7 years. Breast cancer is so unpredictable there is no way of knowing for sure what is right. Go with your gut and take in the information the doctors have given you.

Tamoxifen is a VERY powerful drug and is given to women who progress with more serious breast cancer with mets to the lung and brain and effectively stops the growth. So if your wife has any cells left behind, Tamoxifen should kill them off, if she's ER+.

Because I didn't have chemo initially, I can take Arimidex (like Tamoxifen but after menopause) without having to go to harder chemos. My oncologists hope to get one to two years out of it before I progress. At that point I'll have to move on to IV chemos. See, even they don't know what will happen!

Some people go for second opinions, and third opinions etc, until they get someone to agree with them. Make sure that isn't your intent.

Good luck and I hope someone else pops by.....

jerseyDaddy

Thank you so much for your reply. I know you're not taking it lightly and I do appreciate the analogy...it makes sense.

To answer your question, yes it seems the duct was taken out so close to the margin. More specifically it said <0.5mm at the non-skin containing portion. So what I take away from that is that it sounds like it was very close to where the skin was sparred.

I initially thought the same, they get it or not since its DCIS but after the oncologists initial reaction, I looked online at lot more. In the study I linked to above, they looked for margins after DCIS was removed specifically. That's what got my mind racing even more.

I didn't realize Tamoxifen could actually kill the cancer. I thought it would just stop it. Therefore my concern was what happens after 5 years? If it's a treatment to kill it though, then I guess that puts me at ease a bit.

Also, your point is well taken about going to additional opinions to get the result we want, that's a very fair statement to be aware of if we do go for another opinion.

One additional thing is that the breast surgeon didn't provide us the pathology report at the post-surgery visit or mention the margins, she just said 'go celebrate.' We had to request the report and that's when we saw the margin.

Maybe we'll give the surgeon a call and ask her thoughts on the margin too.

Thanks again!

Paxton29

I had a bilateral mastectomy and my surgeon told my husband while I was still being operated on by the plastic surgeon (tissue expanders) that I might need radiation because of the margins. So, right away they thought that. I had a 2.5 cm IDC on the left and 9mm IDC on the right (they thought the right breast was DCIS but nope). I had a I think 0.4 mm margin on the left and a positive margin on the right.

After we got the path report in, they scheduled me with the radiation oncologist. The surgeon had said he deferred to the RO. The RO said for sure on the right and perhaps on the left because it was so close. We ended up doing radiation to both sides and I'm in the middle of that treatment, having finished chemo.

Remember, I had IDC. I was also 45 at diagnosis and in otherwise good health, but I had bilateral disease which was one of the factors going into aggressive treatment. As my surgeon said: your breasts like to make cancer. But as I understand it, my close margin was a bit of a judgment call. I actually thought my insurer might balk but they didn't.

Good luck to you and your wife. It's very sweet of you to advocate for her. I have leaned on my husband hard to help me make sense out of everything. He's a PhD chemist, son of an oncologist, and he was with me at the RO appointment and co-signed that it all made sense.

barbe1958

Your wording about saying Tamoxifen "stops it" rather than my words of "kills it" is perhaps more accurate. Either way, the breast cancer can't progress. I've seen women here with brain mets and the lesions disappear after being on Tamoxifen, so it's pretty powerful stuff. Your wife's cancer would have to be ER+ for Tamoxifen to be effective and there is a test she can take when she's been on it for a bit that will tell if her body is using the drug properly. She can also stay on it for more than 5 years - in fact, 10 years is more common now. I will be on Arimidex for life, or until it stops working for me.

There are side effects, of course, and she may find it hard to handle, but her body will adjust at some point, so you both have to be patient. The loss of hormones to her body is very difficult, it's like menopause...or think 24/7 PMSing!!

Keep us posted on anything else you learn.

BarredOwl

Hi jerseyDaddy:

Regarding tamoxifen, my understanding is also that its mode of action is "cytostatic" (versus "cytotoxic"), due to its ability to inhibit the growth-stimulating effects of hormones on tumor cells by blocking hormone action on receptors in breast cells. Nevertheless, and as noted by Barbe, it can be an effective therapy, and with IDC also, endocrine therapy may be recommended beyond five years.

The questions of whether further surgical excision and/or radiation should be recommended (or not) are within the areas of expertise of the breast surgeon and radiation oncologist (RO), and they would be most familiar with the relevant studies. They are not the area of expertise of medical oncologists (MO).

It would not be unreasonable to seek additional input and discussion on your question of whether re-excision is feasible and/or advisable from the breast surgeon, or if not, what factors support the conclusion.

It sounds like perhaps the MO asked an RO for input on the question of radiation, and passed the conclusion on to you. I guess I would be wondering if the RO had carefully reviewed your wife's imaging and complete surgical pathology findings before opining on her case (preferred), or if he just provided his input on selected pieces of information provided by the MO (less preferred).

In any case, you may prefer to set up an appointment with the RO in person to ensure active consideration of all relevant information, obtain discussion of her estimated recurrence risk and insight into the relevant clinical and pathological factors, and the factors which he feels weigh against radiation in your wife's specific case. You may also ask the RO for some discussion of the what various studies have found, and the current state of research in this area, as a number of studies in the setting of DCIS and mastectomy have been published since the 2012 link you posted that may further inform medical advice.

A margin of 0.5 mm is on the small side, and the clinical evidence in this area (margins of DCIS with mastectomy) is relatively complex. You have not mentioned your wife's age, which may affect understanding of recurrence risk.

Under the circumstances, it would also be quite reasonable to seek a second opinion about treatment from an independent institution, including a review of the pathology slides (nice confirmation to have), and consultation with second opinion breast surgeon and radiation oncologist regarding possible re-excision and/or radiation. If they do not concur, that is important information to have. If they concur with the advice you have received, you will still find value and it can help reduce second-guessing oneself down the line (regardless of outcome). My situation is slightly different (about 1 mm from the posterior margin in one focus of DCIS), and I regret not seeking a second opinion at the time.

If you happen to be in New Jersey, USA, you might consider an NCI-designated cancer center:

http://www.cancer.gov/research/nci-role/cancer-cen...

Surgery and radiation are local treatments. Unfortunately, even with negative nodes (N0), hormone-receptor postiive, HER2-negative IDC may present some risk of distant spread. The results of the Oncotype test for invasive disease are used to assess distant recurrence risk and inform decision-making on the question of whether to add chemotherapy to endocrine therapy. If the Oncotype results fall in a gray area, you might add a medical oncologist to your second opinion.

Good luck,

BarredOwl

---

Age 52 at diagnosis - Synchronous bilateral breast cancer - Stage IA IDC - BRCA negative;

Bilateral mastectomy and SNB, without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

jerseyDaddy

Thank you very much for your responses. I am very grateful for you sharing experiences and for the information/education.

My wife is 36, ER+PR+HER2-
The 2 tumors were 5-6cm apart which is why they decided on mastectomy.

I didn't realize that there was a difference between a medical oncologist and radiology oncologist and whose expertise is where, The surgeon's nurse had just told us to select an oncologist, said they are all great and threw 3 names at us with no additional background info.

@BarredOwl: To your point about whether the RO carefully reviewed my wife's case, I'd have to say no. We were in the MO's office, he picked up the phone, asked us to go to exam room and within 5 minutes he came in and said no radiation. I didn't get a warm & fuzzy feeling about that decision based on his initial reaction.

The appointment to go back is in 3 weeks with the MO. At that point, he'll have the results of the Oncotype test. I'll pose the question to him again about the radiation decision, although it sounds that perhaps we should ask to consult with the RO specifically. I do wonder however how they would receive this being at the same institution. I don't care so much about their feelings, more about them covering each other (maybe that's a little conspiracy theorist of me though)

We will call the breast surgeon regardless. This does certainly seem like a complex decision and as we did with the initial diagnosis, I do think a 2nd opinion is in order. We are in New Jersey, not too far from NYC. I see on the link provided above that there is one NCI-designated cancer center in NJ and a few in New York City.

Thank You ALL

BarredOwl

Hi jerseyDaddy:

I think it is fair to say that you would like a more in-depth discussion with the RO of the estimated recurrence risk, the clinical and pathological factors that influence recurrence risk and support the recommendation, and the available clinical evidence. You probably wouldn't be the first to seek a reasoned explanation for the advice you are receiving, and your wife is entitled to one.

It is possible that members of the same practice/same institution may be influenced by each other, follow similar internal guidelines, and/or be hesitant to contradict the recommendation of a close colleague or senior colleague. For these kinds of reasons, if of interest and when there is time (medically and under insurance (e.g., in network)), obtaining a second opinion from providers at an independent institution can be of added value.

You might start the ball rolling on the second opinion now to avoid potential delays, because it may take some lead time to get on the appointment schedule and arrange for forwarding of copies of all imaging to date (and earlier comparison imaging, if any), actual pathology slides from biopsy and surgery, etc., all ER, PR, HER2 testing, and associated written reports for advance review. The Oncotype report, which is about 3 pages in a standardized format, can be transmitted later when it comes in. The second opinion place can provide guidance re what is needed and logistics.

Hoping for a nice low result on the Oncotype!

BarredOwl

Paxton29

I second the brilliant BarredOwl's point about what the radiation oncologist should be discussing with you. Mine talked about my specific diagnosis, showed me the standard of care guidelines, reviewed with me why the answer in the left side was not so clear. He had called the lab because he picked up on a tiny discrepancy on the lab report about the positive margin (which my husband had also noticed) and to clarify that I did NOT have skin involvement which my MO had feared. I would expect and want a thorough consult, and every member of your wife's team has a different role and expertise. My surgeon said at my diagnosis that he doesn't like it when the oncs make surgical calls and he doesn't get into their territory.

Keep us posted!

jerseyDaddy

Yes, all we want is to make sure we have all the information available and a reasonable explanation when a decision is made. I also think that is fair and I appreciate the reassurances of that.

The BS we went to has a good reputation which is why we went with her but her communication is certainly lacking. The fact that she didn't mention many specifics of the path report was surprising to us but we just took it as the surgery must have gone that good.

I put in a call to the BS today and am waiting for a call back. I have a friend being treated at the same hospital and she confirmed she sees both a RO and MO as she's had both chemo and radiation treatments. I am a little bothered now that I know the difference in roles that we didn't get sent to the RO first considering the margin was so small (and confirmed by the MOs initial reaction).

I'm getting her RO's name and will make an appointment. We will also be looking into getting a 2nd opinion from another institution; great point about getting the ball rolling. It didn't consider that it had taken 3 weeks to get a second opinion with this BS in the first place.

Thank you ALL so much for your insights!! I can't thank you enough and will certainly keep you posted.

Cowgirl13

jersey dad, I would definitely get a second opinion--both from a medical oncologist and a radiologist. It doesnt' sound like anyone has really sat down with you and your wife. My medical oncologist was a second opinion. He is willing to spend time with me and answer any questions. Remember your wife will be seeing the onc for a long time if she will be on Tamoxifen. Up to 10years. I'm so sorry you haven't been given all the time and info you deserve and that you need. Please keep us posted.

jerseyDaddy

Thanks Cowgirl, I appreciate that. We were able to get an appointment with the RO this week. In the meantime we're still trying to figure out where to go for our 2nd opinion. If anyone who may come across this wants to private message me a recommendation in the North Jersey area that would be appreciated (if that's permitted on these boards, I apologize if not). In the meantime I'm looking at reviews and backgrounds for the Oncologists in my area and hope to make an appointment soon.

Thanks!

barbe1958

Hoping to hear back on your appointment, jerseyDaddy...

BlueHeron

Hi there. Piping in here because I had the same issue. I had IDC 6mm plus surrounding dcis ~2cm. The anterior margin post-mastectomy was very close for Dcis, but fine for the IDC. I met with a very prominent RO, as well as having a second opinion with another RO at a separate facility. Both knew the relevant literature very well. The problem is that the literature on this specific situation is quite minimal, so very few studies to guide us. Both ROs were considered conservative in that they were prone to choose radiation more often than not in close situations. And both, ultimately, recommended AGAINST it in my case. They felt the potential risk outweighed possible benefit which they felt was minimal. An understanding of ductal anatomy helped me wrap my mind around this. I even met with my pathologist (at my request) and looked at the slides that showed the close margin. This was very helpful for me as well.

It's so hard, these decisions. So much gray area, I hate it.

Hope that is helpful for you.

jerseyDaddy

So we saw the RO today and he agreed that radiation would not be necessary. He is from the same institution so we weren't too surprised but he wasn't so quick to dismiss us. I'm glad we did go as this was the first time I feel we got an actual discussion at this "well-regarded" facility about the pathology results.

Thank you very much for chiming in BlueHeron, your experience does help us as it's nice to hear consistent lines of thinking in these circumstances; ultimately that the risks outweigh the benefits. I agree being in the gray area stinks.

He acknowledged that this is a controversial area and stated that if this was just 5 years ago, radiation treatment would likely have been given. He said however that since then, there have been studies (mentioned one specifically from M.D. Anderson that I'm yet to look up) that have led to a change of opinion. After spending some time with us, he said that he was going to call the surgeon to ensure there wasn't anything else he should know that could change this point of view. One question my wife asked was whether extra skin could have been removed that wouldn't be in the pathology specimen. He thought that was interesting, didn't have an answer and said it's all why he wanted to call the surgeon. After some time, he came back in and said that the determination sticks, surgeon agrees and and radiation wouldn't be warranted.

BarredOwl your clarification as to who is responsible for making what determination was very helpful. The RO opened up the discussion with exactly your point; stating that his role with the BS is to determine local recurrence risk and options vs. the MO's role.

I'm glad we did finally get a thorough discussion and we do still plan to go for another opinion elsewhere. We're yet to agree where to go (and with 3 little ones have had limited time to research) but hope to make a decision tomorrow.

Thank you everyone!! My head is spinning a little less now. I'll keep you posted after that 2nd opinion.

TB90

jerseyDaddy: You are facing the same/similar decision I faced almost three years ago. I had a mx for DCIS and there were both close margins and one focal point of positive margin. At first I thought that my BS would remove more tissue in the area of the positive margin. She stated that she could not as it would be going in blind as you cannot see DCIS and the positive margin was microscopic. The close margins were against the chest wall and therefore nothing further could be removed. I researched this topic so extensively that my RO stated that I had found more relevant studies than his research assistant did! Needless to state, the inconclusive nature of this predicament drove me crazy. My BS did not feel that radiation was warranted, but the studies were inconclusive. The RO agreed that there was no absolute here and it was more about my personality type and ability to tolerate risk factors that mattered more. First of all, most of the recent studies conclude that any margin, no matter how small, is now considered to be clear. So I am discussing an actual positive margin. Radiation would reduce recurrence rates by 50% but produce new risk factors. I opted for radiation as I wanted to do everything I could do upfront. I do not accept risk well. Others can and do opt out of radiation, knowing it will then be there in their arsenal of tools should the cancer return. I agonized over this decision, but the good news is that I have never second guessed my decision. I went with my gut despite my DH supporting the BS. It is a very grey area and therefore a very personal decision. Unfortunately, a second opinion, although warranted, may not produce the desired reassurance. All the best.

suz2016

this may sound dumb, but if you have a mastectomy why would thee be margins at all? what is it too close to? the tissues are removed?

BarredOwl

Hi suz2016:

Margins are a measurement of how close disease in the surgically removed tissue is to the edge of the tissue that was removed. Imagine a fruit (a big chunk of tissue removed by lumpectomy or mastectomy) with a pit somewhere inside of it (tumor). The margin sizes are the distances from the outer edges of the pit to the nearest outer edges of the fruit. When the margin sizes are very small or involved, it means the cancer in the breast was located very close to the edge of tissue removed. This raises suspicion that all of the cancer cells might not have been removed and that there may have been more cancer cells nearby that were left behind in the breast, which may increase risk of recurrence. While a mastectomy removes most breast tissue, it is not possible to remove all breast tissue. Thus, local recurrence may occur even with mastectomy.

Here is a link to an illustration on this site:

http://www.breastcancer.org/symptoms/diagnosis/margins

BarredOwl

suz2016

thank you for the explaination. I wasn't aware that it could could come back at all after a mastectomy.

I may have been better off not knowing

grandma3X

Suz2016 - your BS should be monitoring you pretty closely for the first couple of years after your MX, and then at least once a year for several years after. There is only a very low chance that it will come back, but monthly self exams will still be important. For those who do have a recurrence, it is often at the scar site.

jerseyDaddy

HI TB90, Sorry for late response but wanted to say thank you for sharing your experience. In regards to the close margin, sounds like the line of thinking you heard is also consistent with what we did. We saw MO today and although I know now that it's more the BS and RO who decide what to do locally, he did reassure us again by saying that close margin with DCIS "doesn't matter." We're still waiting on that 2nd opinion anyway to be prudent and I will keep you all posted. Thanks