Surgeon was wrong(?) about clear margins/nodes/stage

puncturedbicycle · March 2015

Hi all. This is my first post.

My mom was diagnosed with IDC with components of DCIS about six weeks ago. She chose her surgeon based on various elements, one of which is that this surgeon was involved in pioneering the MarginProbe, which apparently has helped halve the need for second excision from approx 25% to 10%. Also this doc turns up here again and again as 'the best breast surgeon in the world' etc, which made us feel like she was in good hands. Post-surgery (lumpectomy), the first thing doc said to my mom (and then to me) is that they got good margins and the sentinel nodes were clear.

Today was the first post-op appt. Surgeon says oops, we need to do a second excision because the margin wasn't completely clear and oops, one of the sentinel nodes showed micrometastasis, but we took both that node and the next one, which was clear. As far as she is concerned that's the end of that story. She also said no chemo likely and probably my mom is a good candidate for the accelerated radiation treatment (only 1wk) they do at this hospital.

She also told us my mom is stage 1.

So then they squeeze us in for the first consult with the radiation oncologist, who says my mom is stage 2 (which, when she says the tumor was 3.5cm, even I know that is not stage 1), might need chemo and is unsuitable for the accelerated radiation. This was within about half an hour of hearing all the surgeon's news.

I guess I would like someone to help me put this into perspective. Is it normal for docs to disagree or backpedal on this kind of thing? What would account for this discrepancy from such a trusted and respected surgeon?

The radiation oncologist is going to speak with the surgeon to see if she can clarify the situation and she will call us, so I'm glad that someone is going to follow up on this so we don't have to do it all ourselves.

If you've got this far I applaud you. :-) Thanks for reading. I'm so glad you're here. This is a fantastic resource.

I would be grateful for any help putting this all into perspective. Also dealing with some really difficult feelings about the margins not being clear despite earlier assurances. How will they know if they get clear margins the second time? I feel like I can't trust anyone, and of course being given good news and then having it reversed feels worse than just getting the bad news the first time. (I also want to say I understand that an awful lot of people here get much worse news than this.)

SpecialK · March 2015

Your mom is a lucky woman to have a concerned daughter - it is great that you are supporting her through her diagnosis. Unfortunately, it is not always possible for docs to determine margin at the time of surgery - and if this new technology halves it, there is still the 10% you mentioned - which is not 0. I know it is disheartening to hear that a re-excision is necessary, but it comes with the territory of lumpectomy surgery. Generally, re-excision is an easier surgery since they are only after the specific dirty margin. They usually ink the removed tissue on different sides with specific colors so they should know exactly where they need to go back and remove more tissue - i.e., anterior, left side, etc. Determining a clear margin on the re-excision is the same process as the lumpectomy, but it is possible the same thing could happen again. At that point some do another re-excision, some opt for mastectomy. For the sentinel node, it is important to understand what type of exam is done in the OR when looking at the SNB. It is a relatively cursory exam, looking for gross disease. The actual biopsy is done later in the lab, and a percentage of previously clear SNBs from the OR come back with a small amount of disease, roughly 10%. This happened to me as well because the amount of cancer in the SNB was too small to detect until the more thorough lab exam. You will come to understand that treatment of breast cancer is not a matter of absolutes - it is frustrating, but true. Sometimes it is one step forward, two steps back. If your mom is ER+ she can seek an Oncotype Dx text to determine whether chemo would be of any benefit when added to hormonal therapy - and that test takes about three weeks and is done on a surgical sample. Is your mom planning a visit with a medical oncologist, or has she already had one? You mentioned that your mom had a combo of IDC and DCIS - the total amount of tumor removed, which may be the 3.5cm, would be of concern to the RO because of the need to radiate the area regardless of whether it is IDC or DCIS, but for staging purposes only the amount of IDC would contribute to stage. This may be what is causing the confusion - do you have access to the pathology report? If there is 3.5cm of tissue removed, but less than 2cm is IDC, that would be stage 1, if all 3.5cm is IDC the stage would go up. Does that make sense?

puncturedbicycle · March 2015

Hi SpecialK. Thanks so much for your reply. I understand that there is no certainty until everything comes back from the lab. I guess I resent being told that all was clear when I feel the surgeon should have been more reserved about using words like 'clear nodes' when really she could only report on what she saw at the time. It gave me the impression she knew more at that time than she did. Part of their job is gathering information but another v important part is filtering that information through to an actual person whose actual life is drastically affected by it.

Yes, my mom is going to make an appt with a medical oncologist next and yes, she is ER+ and PR+ (and HER2-).

And thanks so much for the clarification re the IDC vs DCIS issue. That makes a lot of sense and sounds like a likely source of confusion.

Again, I still feel that since they're dealing with people they should be clearer about their assurances because it was a shock to be told that my mom was stage 2 just literally minutes after being told she was stage 1. (This is after I gave her the speech about how she shouldn't be shocked if they say she's stage 2 because I read you could be stage 2 even with no node involvement if the tumor was large.) So I guess a significant part of my unhappiness is what I see as poor management of expectations. It is so emotionally taxing anyway to deal with all this, but to be given a big thumbs up and then suddenly having a discussion about chemo...

The radiation oncologist mentioned the additional tests (oncotype), which I think she was going to look into. I will speak with her this week and find out if that is going forward. I will also have a look at the pathology report now that I've had a good night's sleep. :-)

I'm so grateful for your reply. It has helped a lot. :-)

SpecialK · March 2015

Happy to help and I fully understand how all of this feels. Keep in mind that docs will give info based on what they know at the time, and so the SNB info was based on the greater likelihood that the node(s) info was accurate, just unfortunate that your mom fell into the small percentage of a false negative result. You are correct about the importance of the management of expectations and I feel that some docs forget about this because they deal with breast cancer every day, while we, as patients - or daughters of patients, hope to only deal with it once - and are still caught up in the surreal aspect of early diagnosis. Oncotype is typically ordered by the surgeon since it is dealing with a surgically removed sample, or the MO since the systemic treatment decision making informed by the test is handled by them. I am not sure I have ever seen a RO order it, but it is information that is needed asap since chemo comes between surgery and radiation, so whoever can get it done first should do it. It takes up to three weeks for the results, so time is of the essence if your mom is close to starting radiation. I believe that an expedited request can be made if there are time constraints, but the doc has to request that. I hope you can get some clarity and answers, it will go a ways to making both you and your mom feel like there is a definitive path to follow going forward. Please keep asking questions as they arise!

WinningSoFar · March 2015

I think this illustrates why you need to see all of your team of specialists because while the surgeon knows a lot about radiology, he/she is not the real expert who will help you make the call. I think too many of us take the surgeon's word for everything because he is the first person we typically see. I know I did. Luckily, my cousin, who is a doc, dragged me to my appointment with my radiation oncologist (I was convinced I couldn't have more radiation) and a whole world of possibilities opened up. Same with oncology.

My surgeon told me that I was probably ER+ (didn't turn out to be true), that he got clear margins (true), than the nodes were clear (true), and in a further biopsy, that my intramammary nodes were clear (untrue). I've learned to take predictions as just that and to wait for confirmation.

puncturedbicycle · March 2015

Thanks SpecialK. To clarify, I think the RO said the oncotype tests had already been ordered by the surgeon but the RO was going to look into it, as in, find out exactly what info we're waiting for. I know this particular test takes time. We're looking for a MO to hopefully make an appt for next week, asap after 2nd surgery as we can manage.

Surgeon/RO are at NYU, but my mom is a two hour drive away so we're hoping to find an MO nearer her home without sacrificing quality (I hope that doesn't sound awful). So it is taking some time and asking around to figure it out.

Start of radiation is scheduled for 13th April.

Please feel free to add any advice you feel is helpful. We didn't line up an MO earlier because we went quite far down a rabbit hole looking for a good surgeon and it took up a LOT of time. (We sort of put all our eggs in one basket w first surgeon and then found we really didn't like or trust her.) Now I'm scrambling to fix that.

puncturedbicycle · March 2015

Hi WinningSoFar. Gosh, you've been on a rollercoaster. Yours is a good reminder to keep casting that net anew. We got too focused on the surgeon and now we're casting another net for an MO and trying to integrate all this new, less cheerful info into the big picture without getting overwhelmed.

I have a theory that the discourse of surgery is one of 'cut and cure' and dealing with the dead piece of flesh they remove. So as far as the surgeon is concerned, their job is done and they have made you well, ie free of the malevolent lump of cancer. On the other hand the discourse of radiation and other oncology is one of handling the live being and their ongoing challenge to live well and disease-free or as close as they can stay to disease-free, which is a much more nuanced and awkward job. The surgeon's job only lasts a few hours whereas oncology addresses the remaining years of life.

Aarrgh, such a learning curve.

puncturedbicycle · March 2015

Hi again SpecialK. Can I please ask a question about your reply?

I found out yesterday that the oncotype test was not ordered by the surgeon (I must have misunderstood what the RO told us when we saw her on Tues) but will be ordered by the MO.

Can I ask, when you say 'time is of the essence' can you clarify what you mean? My mom's radiation is scheduled for April, about 30 days after her re-excision (which takes place Mon). If she needs chemo, I assume radiation will have to be rescheduled, as will the housing they arranged for us (radiation is in Manhattan and my mom lives two hours away so we've applied to stay in the American Cancer Society digs there). In other words, I can't see how there will be time to make an MO appt, get the oncotypes ordered and completed and either exclude chemo or complete the course in time to get the scheduled radiation in April.

I called the hospital to set up an MO appt with them (I was trying to avoid going to NYC for the MO because it is such a long drive but we can't seem to find anyone via personal recommendation near my mom). Both the RO and the surgeon are supposed to get back to us to tell us who they work with or who they would recommend. I'm trying to gauge how to get things done with this hospital, but I don't want to wheedle and pester if I can avoid it. I am hoping to keep everyone friendly! :-) I guess because my mom is having surgery Mon, it seems like they're quite focused on getting that done before they address anything else.

My mom was diagnosed on 4th Feb, had her surgery 27th, post-op and first RO consult was 10th March, re-excision is on 16th, radiation is scheduled for 13th April. We will try to get her an MO appt in the next week or so but that depends on their schedule. Do you have a view on this timetable?

I hope that makes sense. I'm never sure anymore if I make sense to anyone but myself. :-)

SpecialK · March 2015

I only meant time is of the essence in determining whether rads can go forward as currently scheduled, or will need to be delayed to accommodate chemo, if it is necessary. I would also imagine that the focus on the re-excision so that all proceeds in a logical order. I am thinking the post-op and RO consult was scheduled thinking that there were clean margins, so that part is sensible. Going forward if the re-excision is successful for clean margins, and chemo is not needed, then the rads plan to start for 13 April is reasonable but would also depend on healing from the re-excision surgery. Might have to be delayed if she is not healed. Was the the rads start date was based on the original lumpectomy surgery? If you can get Oncotype Dx ordered asap, and it takes 3 weeks - or less if you can get an expedited reading - you would have that answer prior to the start of rads as currently scheduled.

Lol! Don't worry - you are making sense!!!

puncturedbicycle · March 2015

Thanks so much for that. Some of the anxiety comes from wondering if we're on a reasonable timetable so I thought I'd run it past you. The radiation was scheduled with the reexcision in mind because - barring any complications - my mom heals like a champ! RO said she'd seen incisions many weeks older that were not healed as my mother's was in a week. :-)

My impression is that we need to choose our MO before the oncotype dx will go forward. The surgeon's office called the RO on the day of post-op and asked if we could come down to see her just to do the first consult, but probably they are all still waiting for us to arrange our own MO at home (which I'd love to do but that isn't working out).

I think regardless of margins/2nd surgery we will need to have at least the MO consult to hash out whether or not that micrometastasis in the first sentinel node (second node was clear) indicates a need for chemo. Surgeon poo-poohed the idea of chemo, RO said it's a maybe, but we need to know from the real expert. Maybe since we have the rads already on the calendar they might try to expedite it for us.

Thanks so much for your help. I don't want you to feel obligated to reply but it has been good to help me get my head straight. :-)

SpecialK · March 2015

It is awesome that your mom is a good healer! The many surgeries in my sig line represent that I am not, lol! Your MO can order the Oncotype Dx, but so can your surgeon. Has there been an inquiry about that? I know you were unhappy with the post-op surgeon visit, but if she could order the test it would allow you some extra time to find an oncologist. I would definitely ask whoever order the test to call Genomic and expedite over the phone - laying out the surgery and rads timeline and the need for as quick an answer as possible. Another option is to have a local MO order the test for you in the interests of speed, and you could continue trying to find the right fit for a MO that will be treating. Even if chemo is not needed your mom will most likely need hormonal therapy - that is handled by the MO, so she will need one long-term.

Don't worry about me feeling obligated - helping people is why I am still on this site - if anything I say is beneficial or informative for you, it makes me happy!

AmyQ · March 2015

I want to illustrate an example of doctors making mistakes that leads to shaken confidence in their competence. My onc ordered a complete MRI after my bmx and tissue expanders placement. She must have suspected mets since my nodes were not clear. I arrive at the hospital for the MRI when the technician asked if I had any metal in my body for any reason. I said no, but then he noticed I just had expanders placed so he said nope, cannot do an MRI with expanders which contain metal. Who knew?

I was furious but mostly disappointed that my onc would make such a basic mistake. I called my breast surgeon to discuss my lack of confidence in my onc and she said she too overlooked the expanders. So I guess my point is, it's very disheartening when those we put so much trust in, disappoint us, but it happens and as long as this isn't a pattern, or it doesn't happen again, we move forward. I have moved on and feel nothing but respect and admiration for my onc. I hope your mother's doctor earns your trust and there are no repeat failures. Good luck and I hope your mother gets a low score.

Amy

puncturedbicycle · March 2015

Hi AmyQ. You must have been so upset! Some of these tests require so much setup, fasting, travel etc. My mother arrived for her PET scan to find the machine was broken. She had travelled for 1.5hrs, had a full day of tests ahead and had been fasting since the night before. This was after the surgeon absolutely insisted she drive all the way up to that particular hospital rather than go somewhere local because the machines at the hospital were so state of the art, lol. She still fared better than the guy who was stuck in the PET machine.

We're okay with it now, or we're okay enough to maintain this relationship. The shock of diagnosis made us feel very vulnerable. We were so hungry for good news and we embraced it wholeheartedly only to have it taken away again. We will just have to maintain a more skeptical attitude. You live and learn. And of course as time goes on if your doctor can continue to build your trust, those initial blips become less important.

Thanks for your good wishes. :-)

puncturedbicycle · March 2015

Thanks SpecialK for your lateral thinking. That's an excellent suggestion. When we are there Mon for the reexcision I will ask the surgeon if she can order the test and expedite with the scheduled rads in mind. If that doesn't work you're absolutely right, there's no reason why I can't touch base with someone local to get the process started. You're correct, they're planning hormonal therapy, so we'll continue to try to find a local MO anyway, even if for the early part of the process we may also see someone at NYU.

I think everyone has this experience of wanting to know everything about everything as soon as possible after diagnosis, and the process of finding out what's going on and what needs to be done seems to crawl. I don't actually live nearby and although I will stay with my mom as long as it takes, the sooner I know if there will be chemo the sooner I know if I'll see my husband before, say, June or July. If she has a month before rads I can pop home for a couple of weeks but if she has chemo I'll stay. I don't mind staying - I love my mom - but I don't really like not knowing what will happen and as you can imagine my mom is finding it hard too.

I always knew cancer must present an enormous emotional challenge but I'm learning that the admin and scheduling are also a big part of the picture. You sort of need a PA. :-)

Thanks again all.

SpecialK · March 2015

I will say that some parts of this get easier the deeper you go - and other parts become emergent while in treatment. Things you thought could or would happen don't, and things you didn't think of, or about, do happen! It is hard for a while to feel that you are on any kind of even keel, and you do learn to deal with the surprises. You are showing how much you love your mother, and helping her just as she helped you when you were young and needed her. It is a full circle thing - and good for you, you will know you really made a great difference in being there for her, I know she must be appreciative. My daughter was 21 when I was diagnosed, and in college locally. She stepped up and helped - stayed overnight when I had surgery so my husband could get a good night's sleep, drove me to post-op appointments, etc. I was a bit sad that she had to be worried about me, but also understood this is part of life, and that she would grow from the experience. I think she enjoyed helping in whatever way she could. I am sorry that helping your mom means being away from your home and husband, and I hope that he is understanding - that has to be hard on both of you.

puncturedbicycle · March 2015

Yes SK, everything you say rings true. I feel like I'm getting my sea legs in stormy weather.

Your relationship with your daughter sounds like a good one. As you say, she must have enjoyed helping and knowing what a difference she made for you, and these things do broaden your experience and deepen your character. And it must be rewarding for you as her mother to know she is that kind of person. It would drive me nuts being home knowing my mom was navigating all this craziness herself. For my own peace of mind I couldn't do that. It is satisfying to me to help.

Of course I love my husband and want to see him, but he couldn't be more understanding. If we need to address this first then that's what we'll do, and if there's an obvious time when I can pop home for a week or two then I'll do it.

It's nice to be able to come here and chat about this stuff.

Surgeon was wrong(?) about clear margins/nodes/stage

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