Local recurrence in DIEP breast; oncotype testing
Background: I found a lump at age 39. MRI showed lots of DCIS and the lump was mucinous. atypia lobular hyperplasia in the other breast. I decided on bilateral mastectomy with immediate DIEP. An IDC tumor and one positive node found in cancer side during surgery. I started dose dense ACT 4 weeks later. No radiation needed because of clean margins from BMX and only one positive node. Tamoxifen started 2 weeks after chemo ended. Stage 2 DIEP 3 months after chemo ended. I developed a seroma in the cancer side breast. 220cc drained first time; output decreased over next 3 aspirations. six months later 25cc was able to be drained. Seroma caused breast distortion, so another revision last month. PS decided to send intact seroma 'sack' (really a pseudobursa by this point) to pathology. PS never had a patient form a breast seroma at this stage.
Pathologist said he found DCIS within seroma! Inside of the enclosed seroma that formed within belly fat. a lot of the seroma was formed against the spared breast skin. Breast surgeon flipped out because he's never seen that before. Thought it could be from biopsy seeding. I found out later when pathology was complete that it is IDC, not DCIS. My specimen is out for Oncotype testing, which takes 2-3 weeks?? I don't know size of cancer; it wasn't on path report, so i think it's very small. I haven't talked with my breast surgeon in almost 4 weeks, when he thought it was DCIS. We need oncotype results to have a decent discussion. My local med onc can't really talk to me without test results either.
The wait SUCKS!
I'm 41 now. I thought I was on the home stretch. I have made a huge list of questions for my doctors. Like how/why would an experienced pathologist initially mistake IDC as DCIS? Is it actually a recurrence? Will I have more testing for mets? Why didn't chemo and tamoxifen work? Will I have to deconstruct? The lack of information I have right now has been the worst wait yet in my cancer journey. I really think my results will be in this week. My regular 3 month appt with my MO is Wed, too.
Here are my questions for anyone out there. Has anyone had local recurrence within flap reconstruction? Could immediate recon have been a poor decision for me? All my doctors and research tells me no (but not one friend who skipped recon). Did anyone with recurrence wait on oncotype test? Any other feedback is welcome, too.
Comments
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cider8
I'm so sorry you are dealing with this and can understand your frustration. I'm a little confused about the pathology. Did the pathologist actually put DCIS on the final report or was it told to you by someone? It could have been an opinion until the results were final.
I know one issue with skin sparing is some cancer cells can still be present. I'm know now that radiation is given after MX in premenopausal women with one or more node positive but not sure when that started. But as you know there are other factors that are considered in treatment plans.
I'm glad you have appt with your MO that's where you will get most of your answers. I'm confused as to why you feel you can't talk to your MO until oncotype results. If the pathology report is complete md can talk to you about opinions. Try not to dwell on what wasn't done and concentrate on what to do to get rid of it.
I hope Wednesday you get all your questions answered. -
Thanks for your kind words! Final pathology showed IDC. The report was dated 2 days after I spoke with my breast surgeon. I'm interested in hearing what he has to say about the pathologist telling us it was DCIS. My BS did say I'd most likely need radiation since I didn't have it. But that was when we thought it was DCIS. I don't know if IDC changes that.
When I called my MO, the nurse just said to send in the results when I got them and keep the regular appt. it seemed so far away before! And now it's just days away and I'll hold tight. I guess I could have been more aggressive in getting an earlier appt with her, but I wasn't. I think part of me is taking advantage of the wait as avoidance. I was so on top of everything before. -
Hi Paula... I just met jenifer and Leigh Ann this weekend, and both times your name came up as we try to figure out what has gone on with you.... I agree that when the pathologist said DCIS that it was an opinion before final path report came in... Not unlike when I was told I was node negative, until final path said I had a micromet... I wouldn't get too upset about it.
What I am still trying to understand is the seroma was part of the belly fat? Or was it next to the spared skin? So is it possible that you had remnant cancer cells in your skin? And if you had had radiation perhaps it would have killed it? I fear you just were one of the unfortunate ones that falls into that 2% group who gets a recurrence post mx. I know for me, with IDC and one micromet, I had chemo but no radiation, and one concern I have is the thought of recurrence in the skin or chest wall, but standard of care said it wasn't necessary. And I do believe that 98% of the time, that is true. I suspect in your case, now that the seroma is out that you may need radiation, but that may be all you need. Belly fat can't be cancerous, so I can't see why you'd need to deconstruct.
You have had a long road, but I am thankful for you that they removed your seroma sac and had it tested... And I am confident that they will be super cautious going forward and make this all a distant memory. -
cider,
My goodness, what a strange situation. I read some of your other posts to see if there was any more information, and I came upon this from one of your earlier posts:
"Here's some verbiage from my path report, if you are so inclined to want more detail. Hematoma with recurrent high grade ductal carcinoma on the inner lining of the hematoma. ... Some sections [of hematoma cavity] show malignant cells and ductal structures along inner lining. A smooth muscle myosin heavy chain immunostain reveals that these malignant clusters are not surrounded by a myoepithelial layer. Therefor this qualifies as an invaisive carcinoma."
So here's my thought. I think the cancer in the hematoma is the result of seeding, just as the breast surgeon thought. Maybe it was biopsy seeding but I would think that it's just as likely (or more likely? since the seeding was into the blood and is in the middle of the DIEP reconstruction) that the seeding happened during surgery. What gives it away for me is that there were "ductal structures along inner lining". I don't think there is any way that there can be milk duct structure in a hematoma unless somehow it was placed there, or placed in the blood which formed the hematoma. The presence of the ductal structure also explains how it can be that the recurrence is IDC, and not DCIS. Normally ductal tissue is associated with DCIS; DCIS lives and thrives within the ducts and cannot thrive outside of the duct. But as DCIS thrives within the duct, it may evolve to become invasive cancer. That happens when the cancer cell loses it's myoepithelial layer - that's when a DCIS cell changes to become an IDC cell. So if some ductal tissue, with just a few DCIS cells inside, was accidentally seeded into the blood and became embedded into the wall of the hematoma, because of the presence and protection of the ductal tissue, over time these cells may have evolved from being DCIS to being IDC. If the ductal tissue wasn't there, any misplaced DCIS cells would have just died off. But with the ductal tissue there, the DCIS cells could continue to flourish.
That's the explanation that makes the most sense to me, based on what your pathologoy report says, and my understanding of DCIS. It will be interesting to hear how else your doctor could explain this.
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Beesie, that is a wonderful and helpful explanation. It gives me a better understanding of what was possibly going on with me. I've read some of your posts about DCIS that were very informative and helpful.
I finally called my breast surgeon, so I could feel fully prepared for my MO appt tomorrow. Apparently I'm not waiting on other test results! That's a different discussion. what's good is he explained a little about some of the cell behavior. So either this DCIS seeded from the biopsy or the microscopic bit was left behind from surgery. This DCIS was able to hide while I got chemo then attached to scar tissue (the hematoma) while I've been taking tamoxifen. The cancer cells don't get good blood flow if they are in/on scar tissue, meaning the tamoxifen doesn't get to it. So my doc said the tamoxifen is most likely still doing it's job metastaticly. Of course, it's my MO's job to determine all that.
The hematoma was about 8x3cm and felt like it was just under the surface. So I assume it was sandwiched between the belly fat and spared skin. It's fascinating to think that some cells could have been attached to the skin but the seroma formed and corralled the cells inside vs staying on the skin. Or the seeding theory.
The only reason I threw deconstruction out there is wondering if more cells are hiding on the skin. But I did have a lot of skin removed for clean margins. Plus two more surgeries that removed the old scars during recon revisions. I'm less freaked out this evening. Hopefully I feel even better after my MO appt! -
Hi Paula... I was also told that chemo doesn't get to scar tissue either. When my would-be RO was suggesting radiation after a lumpectomy, this was a case he was pushing (against MX)... the difference for me is that I had chemo before MX, so I didn't have that issue. So it is possible that you had a remnant cancer cell that was unaffected by chemo and tamoxifen. Radiation is the only effective tool in this case.
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Cider8... I am still interested more so now in the pathology report and the Oncotype score. Wondering if those cells contained any mucinous cells because according to the Japanese study of 2012, it seems mucinous doesn't respond well to chemo and it has been suggested the better course is endocrine therapy. Perhaps because of the scar tissue, it was difficult for the Tamoxifen to sponge up those stray cells and the chemo didn't work on those stray mucinous cells.
Since I am not as familiar with DCIS as I am with mucinous breast cancer, the explanation provided by Beesie, gives a thoughtful hypothesis which reinforces my original thought that this occurred due to seeding. If correct, then it seems that despite this unusual local recurrence, your prognosis still is excellent.
I wish you well! -
VR, it's interesting to hear that chemo isn't as effective on mucinous cells. Guess what? It's not as effective on DCIS either. There are many studies that show situations where pre-adjuvant chemo completely eliminates the presence of invasive cancer, but some DCIS is left behind. It's not that chemo is completely ineffective on DCIS, but it's less likely to clear up any DCIS that's left behind. Paula, that might explain why the chemo didn't work on those few rogue DCIS cells that somehow made it into the wall of the hematoma.
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So, Beesie...based on what you are telling us about DCIS being similar to mucinous breast cancer and neo-adjuvant chemotherapy, this scenario really makes a lot of sense. Let's hear more from Cider and what her team has to say. I think Cider has a great surgeon who really knew what he/she was doing when they decided to send the matter to pathology. What a great call!
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VR, I'm not so sure anymore that my tissue was sent out for oncotype testing. When I talked to my breast surgeon, he told me he wasn't following me because he wasn't involved in the surgery and he didn't order the ER/PR or oncotype test. He had someone pull my PS file and couldn't find testing detail there. My PS was the one who sent it to pathology and told me about the cancer cells, and the BS joined in. I still need to follow up with the person who told me about the oncotype testing. I feel like my situation is so out of the ordinary I ended up a little left behind. I'm glad I asked questions, but I wonder if I were more aggressive I could have saved myself some grief. Sorry if it doesn't make sense! Today is a new day.
I had appointments with my med onc and radiation onc. My MO was so compassionate with me, especially when I told her how stressful the past few weeks have been. She does not want me to change a thing in my treatment. She said no chemo for sure and stay on tamoxifen. No need for ovary suppression. One interesting comment she had, regarding the DCIS/IDC: she said show some cells on the cusp of changing from DCIS to IDC to 10 pathologists, 5 will say DCIS, 5 will say IDC. Is this true? i don't know. She said if mine is invasive it couldn't have been invasive for long. She's having the pathology reviewed here. She also told me she thinks this is residual cancer, not recurrent cancer. This is somehow reassuring! Then she sent me off to the radiation oncologist.
I met the RO last year and we determined radiation was not needed then. I like her very much; she listens to me, gives me lots of info and tells me about all the aspects she's taking into consideration. She wants me to have an MRI when my post op swelling is down (another week or two) and also wants a closer look at pathology. She talked to my favorite radiologist, who will be working on my case as well (the MRI and any other imaging needed). No deciding on radiation until more info is gained. By that time my blood test results will be done, and any red flags noted. My case will also be discussed at the Tumor Board meeting.
VR, Beesie, and Betsy, your interest in my scenario is very comforting and I feel so much better about having more info from all sides. I think I am going to sleep well tonight. -
Glad to hear that she thinks it's residual and there is going to be further investigation. I'm wondering if they do the Oncotype DX test and it matches the prognostics of the previous Oncotype DX test, then it might confirm, along with more pathology testing that it is more likely residual. I am glad you are having an MRI and your case is going to presented to the tumor board. I also wonder why the MO didn't recommend ovarian suppression. For the record I did almost two years of ovarian suppression. My MO thought endocrine therapy along with ovarian suppression was the way to go since mucinous breast cancer doesn't respond well to chemo. The preliminary results of the SOFT trial won't be known until late next year. But that trial compares those who defer chemo and choose O/S. Since you already had the chemo, the MO probably thinks it's moot to now do O/S. Furthermore, one of the issues with that trial is that it doesn't specifically look at those of us with mucinous. What I also wonder is how much mucinous BC you had compared to IDC and DCIS. Paramount here is a conclusive pathology report for the tumor board to work with. Nonetheless, if it is residual, despite all of these "issues" you should do well.
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Hi Paula,
Glad that I saw this thread. I've been concerned about you ever since you posted about it on the NOLA thread, but I didn't want to pry. We're very much interested in your scenario and how it happened is but I (and I'm sure everyone else) am concerned for YOU and your well-being. It must be very stressful and I hope you're doing nice things for yourself along the way. I know that you said your MO is getting your pathology reviewed locally, but have you considered getting yet another opinion on your pathology? My friend used Dr. Michael Lagios in San Francisco (you can google him) and she's sure he's the "best." I suspect there are other excellent ones around the country. The scenario your MO gave of 5 pathologists saying DCIS and 5 saying IDC is not particularly comforting. I know if this happened at the local hospitals here, even though they're very good, I'd be looking for an expert pathology opinion. Please keep us posted. Sending hugs and positive thoughts! Jenifer
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cider8, I agree with VR. It's really good news if this is considered residual.... and I can't really see what else it could be. Not in the middle of a DIEP breast.
As for whether two pathologists would see it differently, this is more often the case between ADH and DCIS, because both are in the ducts so it can sometimes be a judgement call as to whether something is ADH or low grade DCIS. IDC is different because IDC cancer cells are outside of the duct whereas DCIS cancer cells are inside the duct. These pictures from bc.org show this well: Image - Range of Ductal Carcinoma in situ (DCIS).
The situation where there can be uncertainty about whether a cell is DCIS or IDC is if a DCIS cell has been moved outside of the duct (by a surgical instrument or a biopsy needle) into an open area... then it can be difficult to distinguish between a DCIS cell and an IDC cell, since they look identical. So this is where immunostaining and the presence or absence of myoepithelial cells comes into play. This problem of not being able to distinguish a DCIS cell from an IDC cell tends to occur in situations where someone is believed to have pure DCIS and yet a few cancer cells were found in one of the nodes. The question then is whether the cancer cells are: a) DCIS, which would mean that the cells had to be placed there by a surgical instrument because DCIS cells cannot travel on their own into the nodes; or b) IDC, which would indicate that there is in fact some invasive cancer in the breast but it just hasn't been found, i.e. an occult invasion.
I can see that in your situation, with the cancer being found in the lining of a hematoma, that there could be the same confusion in identifying the cancer cell. The pathologist did exactly the right thing, "A smooth muscle myosin heavy chain immunostain reveals that these malignant clusters are not surrounded by a myoepithelial layer". The result does indicate invasive cancer, except that science isn't perfect on this one.
Is p63 reliable in detecting microinvasion in ductal carcinoma in situ of the breast?
Something I forget to mention in my earlier posts.... whether it is DCIS or IDC, it still makes sense that this all started from some displaced DCIS cells. It happens that 50% of DCIS recurrences are not found until the cancer cells have evolved to become IDC.
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I got a call today from the oncotype testing people, getting my approval to go ahead with the testing. My breast surgeon ordered it earlier this week. Not a month ago like I was told secondhand (and then told it wasn't ordered). I'm a little miffed that things are so confusing with me. But I understand how atypical my case is. I know my doctors will update me next time I see them. I'm just so glad things are progressing to find the best treatment and that I'm not stressing out! Right now I'm curious.
I also find it very interesting that I am getting the oncotype. I was told it's not necessary for my situation and that it's not protocol, because it's the same cancer as before. But now I'm getting it! And insurance is covering it. Again, I'm curious to know why. I suspect to help decide on radiation. If I understand correctly, oncotype is more common to decide chemo, but it can be for rads, too. My RO knows I am concerned about rads increasing my lymphedema risk even more (I have latent signs of LE). I'm guessing my various docs have been in some sort of communication. I even think the Tumor Board met today. I REALLY want to hear what they have to say.
I'm packing up to take my daughter's 3rd grade Girl Scout troop camping this weekend! That will keep my mind off stupid cancer! -
Cider... Wouldn't it be helpful if the tumor board discussed your case after the Oncotype DX test is completed?
I also am curious to know if they broke down how much of the tumor was mucinous and how much was IDC. The reason why I ask is because mucinous does not respond as well to chemo and perhaps O/S might be beneficial along with endocrine therapy. -
I do know the tumor board meets every two weeks, and I'm pretty sure it was today; but I don't actually know. I don't know that my case was discussed, but I suspect it was. I think they get excited about this kind of stuff! I haven't received a call from radiology to set up any imaging appointments. Maybe they are deciding what imaging I need? I'd say yes, it makes more sense to discuss once oncotype results are in.
On this residual pathology report there was no mention of mucinous, so I'd say none was found. I will ask about it, though. Or are you making reference to my original pathology? -
I am curious about EXACTLY which type was found this time. Because if there was residual mucinous BC, it's likely due to mucinous not responding well to chemo.
I would think the tumor board would like to see the Oncotype DX test results before they make a recommendation. Nonetheless, again, I still think you have great prognostics and despite the fact they were late to send the specimen for the Oncotype DX test, it seems like you are getting great care! -
I'm scheduled for my breast MRI this Thursday morning.
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I wish you well!
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Thinking of you Cider8!
Marcia
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MRI cancelled because insurance needs 72 hours to review my medical file. Just as well. I've caught a nasty virus this week and was thinking of canceling because I've been coughing so much (fever finally low grade today).
On the up side, all my labs from my MO are looking good. -
I had my MRI today. I was told one or two days to review it.
I got a call last week more tissue was needed for the oncotype testing. This is getting so dragged out. Thankfully, I've decided not to worry and let my doctors do it for me! -
My breast MRI showed nothing suspicious. Tumor markers in normal range. My MO had a little trouble receiving path slides from out of town. They have finally arrived. A nurse told me my docs were meeting tomorrow to discuss what they see, and should be calling me later tomorrow.
My oncotype dx score came in this afternoon. I guess they will be discussing that along with the slides tomorrow. My RO did say that even without the slides (just the path report) the tumor board agreed I need radiation. My understanding was that she didn't want to set up the treatment plan until her pathologist could review slides. Finally it is all here!!
So my Oncotype DX score is a 34. I understand this is high but my breast surgeon doesn't know what good it will do to have the info. My MO said oncotype wasn't needed at this point. My breast surgeon said one of my doctors here asked for oncotype score. I'm still feeling in the dark but there is a light at the end of the tunnel. I just hope it's not a train!
Another thing on the oncotype dx score is that it referred to women having benefit from CMF/CF chemo. I had dd AC/T. I don't know what this means to me either. The ER/PR was all the same as my IDC before.
I will let you know how my next discussion with my doctor(s) goes. -
Hi Paula,
Sorry you've had to go through this. I've been thinking about you and glad for you that you'll finally be getting some answers. I'm sure that the waiting as the process has dragged on has been excruciating. Being able to take action will at least help you feel like you're accomplishing something. xo Jenifer -
Recurrence afterb12 yrs on diep flap.
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Thanks, Jenifer. No call yesterday or today. Hubby encouraged me to call but I figure what's the point---they will call when there is some info to give me! No news is .... no news. This uncertainty and waiting is the worst. My RO understands that this wait has been hard on me. But I want my doctors to make good thoughtful determinations, not rushed or hasty.
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I talked to MO today. The pathologist here agrees completely with the first pathologist's findings. The tumor board agrees it is residual, not recurrence. They all looked at my MRI which appeared perfectly clean. They were able to see my chest wall clearly. The chemo referred to in the Oncotype test is an old chemo; the dd AC/T was perfectly appropriate for me. The Tamoxifen is apparently working hard for me now. My MO thinks the microscopic amount of cancer cells were in a place that just did not get good blood flow while I had chemo, then continued without good blood flow when it got enveloped in the seroma.
It's really crazy to think about a tiny bit of cancer hanging out there for a while, then getting scooped up in the seroma. My MO thinks the cells had to be in the spot vs entering the seroma via lymph channel (or however it's referred to). -
I am glad to hear that they all think it was residual. It seems plausible that the cells were harboring within the seroma. Funny how biology sometimes works....
Hope this news brings you reassurance and much hope for the future!
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