Tiny recurrence after mastectomy and radiation -- whats next?
Hi all. I had a left mastectomy 3 years ago followed by radiation due to close margins (<1mm) on the front, outer side, and back. I had very small breasts with three small IDC tumors in the left side and a scattering of DCIS, so I think close margins were unavoidable. I've been on tamoxifen for 2.5 years, starting as soon as radiation completed. Unfortunately I was just diagnosed this past week with a very small recurrence of IDC in a small focus in the "deep dermis" above my implant. I check regularly, and this little peppercorn-sized nodule appeared out of nowhere. I have my implant above the muscle, so it feels like a very thin layer of skin covering it, and the bump was easy to feel. (for what it's worth, it showed as a small shadow using the flashlight test too.) It was 4mm on ultrasound, and pathology said the IDC focus was only 2mm. Still ER/PR positive, HER2 negative. No grade reported. (??) It was an excisional biopsy with negative margins, thank goodness. Two years ago my beloved breast surgeon moved, so I was switched to a general surgeon who I do like as well. But now I don't know what comes next. He is going to a conference "soon" and will consult with colleagues there and get back to me, but I have no idea when to expect his next call.
I know 2mm is teeny tiny, but it's scary that it started growing again. I assume my HT will be switched, but I don't know if anything else will be recommended. Have any of you had a similar recurrence? Did you have any treatment for it if it was removed with negative margins? The surgeon said since I had radiation before, I likely won't be able to have it again. I want to ask for at least a breast MRI, since the implant is above the muscle, and I have no way of knowing if any additional nodules started growing behind it. And does this warrant any full-body scans? I'm a little nervous of being somewhat dismissed since it's so small, but what if it started growing elsewhere? I am much stiffer nowadays (and only in my 30s, ha), but I chalked that up to tamoxifen. I do have rib pain, but it's been uncomfortable since reconstruction, so I assume that's from the surgeries there and perhaps radiation too. I just hate that fear is creeping back in. 
I would appreciate any sharing of similar stories including if you had additional treatment or scans as a result. Thank you!
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Well, sort of. I had bmx, poison, burn 7 years ago, no recon. This year, I had weird symptoms, pet/ct lit up nodes on the other side. Slash/burn. Now I'm considered stage 4, on ibrance/letrozole.
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Similar but not quite. 11 years ago I was dx with DCIS, LCIS. It was everywhere but no IDC. ER+/PR-. BMX with recon (under muscle) was all I had done. No meds because I had the bmx. In August I was diagnosed with IDC, 9mm. ER+/PR+ (95%). I finished 30 sessions of rads a few weeks ago. I just had my first Zoladex injection just over a week ago and just started Arimidex on Friday. Considering ooph but not sure yet. MO wants me to take Arimidex for 10 years. I had an MRI and Pet Scan. All scans came back clear except that my implant has a rupture.
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Thank you both for sharing.
Spookiesmom, was your second time radiation on the opposite side as the first?
Mocame, thank goodness your scans were clear, but I'm sorry to hear that your implant has a rupture. I'm guessing you'll need to replace it? Best of luck to you.
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Yes. First time left side, 2nd time right side. Each surgery abut 11 nodes taken out. 2 Nd time was a few less treatments and was a lot easier on my skin.
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Yes. Very similar situation.....
First of all, I am sorry you are dealing with this.
Second...my story...14 months after finishing TC chemo (had BMX before chemo) I developed a palpable lump. I was referred to PS because they were "sure" it was scar tissue. PB was 99% sure it was scar tissue. My gut told me otherwise, so I asked to have it removed and he gladly obliged. After removal (it was taken out in a few chunks) he said it still looked like scar tissue but he sent it to pathology to be sure. It was IDC. I set up appointments with a new local oncologist, as well as one with a well known major medical clinic. The big clinic did an ultrasound and found nothing else. They recommended reexcision since margins were not clear, radiation (I did not have it previously), ovary removal, and aromatase inhibitor. I asked for Oncotype because my gut was that this was more aggressive. They refused to order it, even when I said I'd pay out of pocket; they were "sure" my surgeon must have missed some and that this was non aggressive. I saw a local MO the following week. He was new to me, but came highly recommended. He ordered an MRI which was clear. He agreed that since my cancer was "not behaving" he wanted the Oncotype so we had all information available to make treatment decisions. It came back quite high (40...it was 16 the first time). During reexcision, they also found a second small tumor that they did not see on ultrasound or MRI. This was several inches from the first. Armed with the info on high oncotype and second tumor big medical clinic agreed chemo was warranted. So...I then had chemo, ovaries out, radiation, aromatase inhibitor.
Sooooooooo.....make sure your team makes no assumptions. Get an MRI and have it read by more than one place. Find out what they plan to do to assess lymph nodes. I'd want some sort of a scan since your cancer is not behaving. If you are ER+, HER2-, get Oncotype or similar test. If they tell you they are not usually used in recurrences, I can tell you that there are NO blueprints for local recurrences, so get all of the information you can to make treatment decisions and this is part of that. Do not hesitate to get multiple opinions.
PM me anytime with questions.
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Thanks so much for sharing, KBeee. I'm sorry you had to deal with this too, but you set a good example of advocating for yourself.
I have an appointment with my old breast surgeon today (not local to me anymore) to get her opinion while I wait for my current doc to get back to me. I'm hoping I'll have a little more direction after seeing her. It was ER+/Her2- again, but I'm pretty sure the focus is too small for Oncotype. I want to at least know the grade of the cells, and for some reason the pathology report says nothing about that. I will also push for Breast MRI and ask about other scans since the Tamoxifen wasn't actually working during this time.
Thanks again.
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Hi Kat. Just had a tiny recurrence myself this summer. Had the operation followed by CT plus Bone scan to check for spread. Luckily none! Just a change in hormone therapy for me as have already had chemo twice.
Well done for catching it early. Try and get some tests arranged to check for spread.
Cathy
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2nding KBeee - I had to fight for a 2nd Onco as well. Onco's were 15/14 respectively. Well worth it! I had multi focal (3 tumors ER/PR+ Hers-) as well in the right breast. Had an mx, no recon—eventually after all tests came back was told I was good to go. I started planning delayed recon, but 7 months later on my still flat chest I had a new lump. I knew it was back. Biopsy confirmed, also not "normal" behavior…. Had it removed followed with 33 radiation treatments. Had 4 hospitals consulting….50/50 on chemo. I went with my gut and turned chemo down for "now".
The first time I refused tamoxifen- my gut told me it would be more harmful than go for me. After the recurrence, I sucked it up and started it. 5 days on tamoxifen and I was in the hospital for 2 days with a LONG list of side effects, one being fluid around my heart. Lesson learned—LISTEN TO YOUR GUT.
After the recurrence I got a FULL work up. First Pet Scan, MRI, and more blood work. I would recommend not stopping without both an MRI and Pet Scan imo. Both work differently and "see" stuff differently. Also because of multiple factors and the recurrence I am considered very high risk and am supposed to see a doctor every 3 months for a physical exam, and an MRI annually and mammo/ultrasound annually—rotating to each is done every 6 months.
Side note….for what ever reason the recurrence was ok for me. I had done my research, I understood why I was getting a pet scan, understood the risks of a sudden stage 4 result. I was prepared and went to battle. My family….husband and two teen boys had no idea. I hadn't realized that they were so scared they just supported me the first time but didn't get educated. When my pet scan came back clear and my aunt and I were jumping up and down celebrating, my husband had no idea why. What I am trying to say, it was WAY WAY HARDER on my family the 2nd time than it was for me. I had to slow down and have grace, gently educate on what I thought we were well past.
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mocame - did they not check any of your nodes or want to remove additional nodes once they found IDC following your DCIS? How do they decide this? MRI?
I also had DCIS, BMX and am worried my current new lump might be IDC. I would expect radiation but losing more nodes would be difficult for me as I've already had swelling and "reactive" nodes (that I hope aren't cancer. they've been biopsied but by residents at an educational hospital. they struggled to get samples so only two samples were tested despite two biopsies 1.5hrs each, and two swollen nodes.)
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blah333 - They did not want to remove any more nodes since I had some removed at first dx. I had a PET Scan and MRI done after 2nd dx and nothing lit up so they decided to just do radiation.
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Thank you all for sharing your experience. As an update, I did have a bone scan and ct scan to make sure it wasn't lurking elsewhere. Those came back clear, so thank goodness it's only a local recurrence.
I can't have more local radiation, because I had the full dose three years ago. Now I am scheduled for more surgery next week that feels like another left mastectomy. My surgeon will remove the implant and then as much skin (including nipple) as he can while still being able to close me. He will attempt another SLNB, but there is a pretty good chance it won't drain properly, and so he might not find more nodes to remove. After surgery I will be completely flat on that side while "normal" on the right side (I had a uni mastectomy three years ago). My right breast is small, so that will help, but I'll just have to wait and see what life is like being so lopsided. I have a very very good PS who did the reconstruction the first time, and I saw him to find out options after this. The only real option left is a lat flap to hold another small implant, because I don't have much tissue elsewhere (underweight bmi). I'm undecided about that, so my current plan is to see how I feel after I heal from this surgery. I really like my surgeon, but he's not the one who did my original mastectomy. Since I'm going flat, I do hope it's flat and not bumpy or loose if that makes sense. And of course I'm nervous about waiting for pathology results again, even though there is no sign of additional lumps, and nothing showed on the ct scan.
And finally, I might be dreading the change in HT more than the surgery. I was scheduled to start zoladex injections yesterday, but I proposed waiting a month so I can heal from surgery before introducing new side effects. So I will start them next month and then add letrozole 3 or 4 months later.
This has been a whirlwind and dragged on over the holidays. I'm ready to get this behind me. What a disruption a tiny little peppercorn of cancer can cause, eh?
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mocame - thank you for your response. I am still waiting to see what's going on with me! They did a CT scan but won't tell me anything. I had a ultrasound yesterday and will have a biopsy next week. I hope to be able to read my ultrasound report this weekend. I tried to look at the ultrasound screen and memorize the shapes of things and then google it lol.... but its' too hard with all these circular ovular things. I feel like I may be in a similar boat as you (IDC, Left, <1cm, Stage IA) but I also saw the tech measure three axilla lymph nodes and one was 2.2cm so I am scared about that.. just being neurotic while waiting though. It's good to hear they don't always remove more nodes for recurrence. I bet they will pester me though because I've had 1-2 of them be swollen since surgery. Wish this process wasn't so slow. I will request an MRI even if the biopsy is magically benign somehow.
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I'm sorry you ladies are going through this. Where to begin? Get a PET scan before any surgery, for sure. But also get a breast MRI before surgery - my second surgery failed partly because this was not done. I had to go to an NCI center for them to salvage the situation. I did get radiation a second time, so it's not impossible, but yes, probably not healthy. So far I'm okay, and I'm still being treated with curative intent. It's a tough spot to be in for sure. Hugs and best wishes to everyone.
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Blah, I smiled when you said you were watching the blobs on your ultrasound. I asked the tech to take picture of the screen for me with my phone and she did. We have a radiologist in the family and when I sent him the photo, he gently prepared me for what I suspected was coming. I’m a strong believer in pushing for results. It’s my body!!
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MNSusan - Radiology is so fascinating! I definitely watched today during the biopsy. WOW I got myself worked up over (possibly) nothing. They had several images of mine on the screen when I was waiting, and I watched the procedure -- what I thought was a ball or circle with static in it last week was definitely more of a black circle this time (like what cysts look like, according to what I've seen online). I'm not sure they'd let me take a picture, but I could have definitely snuck one of last week's images if I cared to. My healthcare system is quite slow to deliver results, and that's a problem, which causes my mind to wander until I have the definite information I need.
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I just found another cancerous lump near my mx scar. I pointed it out to the NP 6 months ago and she thought it was nothing. Last week a different NP said why don't we get this checked out. The ultrasound and mammogram only showed an unidentifiable mass. The biopsy surprised every one.The PET and MRI are scheduled for tomorrow. Hopefully I'll be able to get a copy of the path report tomorrow too. Scanxiety is real tough on me. I don't know if it's easier or harder the second time around.
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Uuugh. I am so sorry you have this added worry. It infuriates me when they blow off a concern as nothing. Let us know when you get more results. Thinking of you.
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So sorry you're going through this AGAIN. I had IDC, grade 3, stage 2 lymphovascular invasion was present. Had a nipple sparing bimx with immediate DIEP flap reconstruction. No radiation, but had neoadjuvant chemo with red devil, taxol & cytoxan. This was all in 2017. Looked in the mirror the other day and saw a lump on the same side of my breast, very close to where my main tumor was. It is very hard, round and obvious. Just wondering if this is what y'all noticed with yours-waiting for an appointment with my breast specialist and I'm sick with fear.
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Prdanib - that is very much like mine was. It was small and bruised looking and firm. I thought I had bruised it and it didn't heal because of poor circulation there from radiation. I have a lumpectomy scheduled for the 28th and then on to Faslodex. No signs of it spreading anywhere else thank goodness.
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Hello! Still waiting for my biopsy result. It was inconclusive so pathologist wanted to do a stain on it. Has anyone ever had this happen before? I'm so frustrated and nervous.
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Sorry to hear your biopsy is inconclusive so far, Prdanib. I haven't had that issue before, but can imagine the frustration and anxiety it would cause. Not getting answers or a delay in getting answers is emotionally exhausting. I hope they can stain the slides and get you an answer very quickly!
I'm currently on Week 3 of waiting for excisional biopsy results...I've complained to the patient advocacy section of the hospital that waiting this long is quite unacceptable, especially for a patient with a previous cancer diagnosis!
Wishing you the best and hoping your results are in very soon! Keep us up to date.
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Mudstick, 3 weeks?!!!! That is crazy and very frustrating/nervewracking. Hope you get an answer soon and that everything is ok
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Just got the results today. Not good. Breast cancer mets to the skin from the lymphs.
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Prdanib
I’m so sorry your results weren’t good. It’s such a gut punch when you hear those results. We’re all here for you sending positive thoughts
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No treatment plan yet. Going up to Sloan Kettering, getting PETCT and MRI to see if it has spread elsewhere. Thank you for your support. xo
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I'm sending you strength. I hope you and your Drs can get a plan in place soon. ((Hugs))
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GraceB1. Kat104 & Prdanib - Just wondering how everyone is doing? Are you working through treatment or changes to treatment?
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Hi-Learned last week the 'scar tissue' lump near my mastectomy scar is a recurrence, so surreal. I Had first brought it to the attention of p.s back in October and he was very reassuring that he put lots of stitches there and that it is too early after exchange surgery (was 1 month out) to do ultrasound and get conclusive results. I felt confident in his knowing his work so didn't think more of it except the 'scar' kept 'growing'. So i brought it up at m.o appt last month and he sent me for ultraound for my own peace of mind. Less than a year after double mastectomy this turns out to be a 1.5 cm recurrence with a possible lymph node involved. More shocking because I had a low oncotype score indicating less than 3% chance of recurrence. Now going through many tests to check for metastasis-worried about mild but burning rib pain near site.
Like Greeneyes81, I feel surprisingly calm about it. It helps that I know my oncology team already and despite the setback I have so much confidence in them. I feel more prepared that I had a 'trial run' at all these tests last year ie knowing where I'm going in the hospital and what the procedures are like.
Kee-bee-I didn't know oncotype tests results could change if you do them again. I wonder if this would be a worthwhile road to go down but wonder if it was misleading in my case.
On a side note it's a little scary that all this is going on for me personally in the midst of a pandemic-will it delay tests/surgery, put me or my loved ones who are accompanying me at risk? We have had very little outbreak in this area but things can change quickly.
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Snowflake22 - I feel just like you! All this pandemic going on around all of us.....as we are dealing with our own health crisis, having nothing to do with COVID19. I, too, have been down the breast cancer path before and am amazed how different my approach is this time. Still am overwhelmed, still not sleeping well, still anxious....but all the medical stuff is where I have been before. Didn't like it then....don't like it now. But at least then we weren't dealing with all these outside affects of the virus!!!
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