Need biopsies again
My MRI showed two new areas of concern, so I have to get a MRI guided biopsy. Last spring I had a biopsy at the scar site come back with fat necrosis, giant cell reaction, and fibrosis, and it seems reasonably likely that the first spot is related to that, but the second spot seems to be a slightly different area, although extending toward the lumpectomy site. The mammogram I had in May also showed "likely benign" calcifications in the lumpectomy bed, probably fat necrosis, and I was on a six month watch for that, but now this has happened first. I'm trying not to be terrified. Birads score is 4, not 5, and there don't seem to be any lymph nodes involved, but there is something about "tenting" of the pectoralis, although "no enhancement of the muscle belly" whatever that means. I'm terrified, and so very unhappy to be back on this ride yet again.
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Just realized it's been almost exactly 10 years to the day that I joined this forum because I'd found a lump and was waiting through the diagnostic process. It turned out to be benign. Now I'm waiting again, this time as a cancer survivor, to find out if I'm having a recurrence. I know so much more now, including the knowledge that I am stronger than I thought I was ... but boy oh boy, I REALLY don't want to do this again.
In my most logical moments, I think it HAS to be more scar tissue. I was very much hoping not to need more biopsies, but was otherwise fully expecting the MRI to show changes, because there definitely have been some since last year's unremarkable MRI. If there had been none, I would have suspected they had my results mixed up with someone else. I'm not even surprised that there's been more since the May biopsy and mammogram, because obviously the stupid stuff CAN pop up out of nowhere over a matter of months. On top of that, my oncotype recurrence score was low, and I lowered my risk more by having radiation and taking tamoxifen. So which seems more likely, scar tissue or a recurrence?
I know none of this logical thinking is going to have the slightest effect on the results, but maybe it will get me through this episode in a functional manner. Either way, I'm ready to look into a bilateral mastectomy. I can't live this way.
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Purplecat so sorry you are jumping back on the merry go round of finding something, testing it, waiting. This type of cycling worry was also one of my reasons for mastectomy as well. You just have to pick the path that makes the most sense for you and you alone. Hoping for benign results for you.
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Thanks, Rah. It's such a big decision. It's less devastating to think about now than it would have been 4 years ago, when I was just so grateful to be able to keep my breast. Now I’m realizing just how high a cost I’m going to pay over the years for that decision, even if I never actually have a recurrence.
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Just burning off some nervous energy. I will probably use this thread like a journal until this situation resolves one way or another.
I'm trying to look at my upcoming biopsy results as something that probably won't change my life very much in the long term. By all accounts, cancer in the breast isn't what kills people, it's the cells that may have escaped into the rest of my body before the tumor was discovered and eradicated. I take tamoxifen just in case that's happened, but it may or may not work. I'll never really know if it worked, only if it didn't work. A recurrence wouldn’t change that.
If this new thing is a cancer, it seems reasonably likely to be DCIS, just based on terminology in the MRI report. That wouldn't be great, but wouldn't change my long term survival odds. It might indicate that my tamoxifen isn't effective, which would be bad news, but then I'd just switch to an AI, which might be more effective. If it's not DCIS but something invasive, I may need chemo, which will make for a crummy winter, but that's short term. Both DCIS and invasive cancer would reset my clock, which would be a bummer, but it's not as if this is one of those cancers with a 5-year get-out-of-jail-free card anyway. I'm going to be living under the shadow of my original cancer for the rest of my life whether or not this is a recurrence.
A benign report would be a huge relief, but at this moment there's nothing that could convince me it's a good idea to keep my cancer breast. The cost is just too high. Maybe some day my dense tissue will thin out enough that I can stop paying hundreds of dollars each year for an MRI, but that's going to add up to thousands of dollars over time. Diagnostic mammograms and biopsies cost money too, and I’m almost certain to need more of those. And then there’s the time it all takes. Last spring I spent two beautiful afternoons at the cancer center instead of out in my garden, and now this latest drama is happening during one of the most beautiful autumns I’ve seen around here. And then there’s the mental load. I’m making ditzy mistakes at home and at work, can’t focus on tasks, and have been generally anxious and on edge. Therapy is helping with that, but therapy takes time and money too. So, I think a mastectomy is in my future no matter what, and if I’m doing it to avoid future scanxiety, it doesn’t make sense to keep the other one, which will still need MRIs and mammograms and becomes more likely every year to develop a new cancer.
I really wish I didn’t need a biopsy, especially this MRI guided one. Biopsies are stressful enough without being in that awful noisy machine. But maybe it will be my last one. I’m going to get through it by promising myself I’ll never have to do it again.
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Just 8 more days until I finally get my MRI guided biopsy. My 2018 lumpectomy ended up happening just 24 days after my bad mammogram, which I realize in hindsight was really fast. In those 24 days I was able to do a diagnostic mammogram, a biopsy, find and consult with a surgeon, get a MRI, and have the radioactive marker planted before surgery. Maybe that's why this 24 day wait between my bad MRI and the biopsy, with no progress and absolutely nothing I can do to get more information or solve the problem, feels so unbearably excruciatingly long. The scanxiety has been almost crippling. If I weren't getting therapy I'm not sure I'd be functioning at all, and for the first time ever I asked for a Xanax prescription. I've made it this far without anxiety meds, but two biopsies in one year combined with a 3.5 week wait seems to be past my limit.
Because of this forum, I knew to expect some scar tissue scares after lumpectomy and radiation, and thought I could cope with them. That was mostly true back in May; I’d never had to wait more than a few days for a biopsy, and was was proud of myself for successfully using my anxiety strategies to get through yet another one. I hadn’t thought through the fact that if anything ever came up on my MRI that needed a biopsy, the wait would likely be long due to the scarcity of machines. This could happen every year for the rest of my life, and I’m finding I can’t stand it, nor can I tolerate putting my family through this kind of uncertainty on a regular basis. (I wouldn’t have told them at all, but there’s no hiding my jitters and if I didn’t explain they’d wonder.) So, I’ve scheduled an appointment with a surgeon to get the ball rolling on a bilateral mastectomy. Do I want to lose my breasts? No, I do not. I was so happy to be allowed to keep them 4 years ago and thought I’d gotten off easy with just a lumpectomy and radiation. I was wrong. I don’t know if there’s any easy in breast cancer survival, but two biopsies in a year and worrying myself sick definitely does not qualify.
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purplecat - I just wanted to say hello and that I hope this test turns up nothing. As an anxiety sufferer even before my diagnosis I know how hard it is. I’m thinking of you and hoping for your peace.
For what it’s worth, I had a single mastectomyand I have no regrets. I also had a very smooth recovery. I wish you the same if you choose that route.
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Thank you! It helps a lot to know others get it. It’s good to hear you don’t have regrets about your mastectomy. From what I’ve been able to piece together from this forum and other places, it sounds like most women are satisfied afterwards. Hard to imagine, in those moments when I really don’t want to lose my breasts, but I trust it will be true for me too. Thanks for sharing your experience - it makes it seem more do-able.
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I’m happy I could offer even a little bit of comfort. Feel free to PM me if you want to chat about it!
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Thanks, jh40. I appreciate it!
Just got back from my biopsy. Since it was MRI guided this time and there were 2 spots, it took longer and was more uncomfortable than any I've had before. I was on my stomach with my arms over my head and my face in a padded donut for what felt like hours, but I think it was probably just one hour or less. Xanax helped, but it's as if all the brave facade I've been trying to put on for the last 3.5 weeks is coming crashing down and I feel just shattered. This morning I had myself convinced it was just going to be more scarring, but at this moment I'm equally certain it's going to be cancer again.
No one said anything to reassure me beyond "a lot of things that show up on MRI turn out to be nothing." So that felt good. And then I said something to the tech about waiting for results and being glad when they were in, and she said “yes, then you can make a plan." So that felt like … I'm going to have to make a plan. And I didn't really have any information beforehand. With last spring's benign experience the radiologist who did my diagnostic mammogram was pretty reassuring that it would be scar tissue. With my cancer diagnosis 4 years ago the nurse who scheduled my biopsy was, in hindsight, preparing me to hear that it would be cancer. With this round, I really have no sense either way. I've only discussed the MRI with my PA, and haven't asked for her opinion at all because it doesn't really matter. All that matters is the biopsy result.
So I think this feeling I have right now, that it's going to be cancer, is based on spending most of the afternoon feeling like a cancer patient. Walking into that building yet again. Even with Xanax I could feel myself trembling and wanting to cry. Needles. Machines. Lots of kind medical personnel treating me gently and with sympathy. Having to change out of my clothes into scrubs for the MRI. Riding in a wheelchair. Sitting in the post-procedure bay surrounded by a curtain icing my boob. It all screamed to me “Here you are again, a cancer patient. Get used to it." Nothing has changed in my MRI results, which referred to a couple different kinds of “non-mass enhancement" and was BIRADS 4, not 5. That feels hopeful to me, or at least it did this morning. But right now, I feel very cancery and hopeless. Right now, there is absolutely no way this isn't going to end with a mastectomy. I think my poor boob just wants to be done. Is there a rainbow bridge for boobs?
This is such a ramble and sort of pointless, and I don't know why I'm even posting except to add to the collective record of what it feels like to have to go through a recurrence scare.
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I don’t have any great words of comfort or a magic wand that will instantly make things feel more hopeful but I wish I did. Which I know isn’t much but I just feel like I need to say you are being heard. At this moment when things feel so uncertain and it’s hard to find the hope, and maybe you feel a bit alone. A virtual hug is being offered. I am sorry that today was so tough and I hope the plan you get to make is celebrating it’s not cancer. But if it’s not, remember you don’t have to be brave and strong all the time, you are allowed to be moody and mopey or whatever else emotions or rambling you need to do
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Thanks for the hug, quietgirl - it helps a lot to have someone understand.
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BENIGN! "Therapy-related changes, abundant mixed inflammation, and reactive cellular changes." I think that means radiation damage. I'll take it. I was absolutely convinced that it was going to be cancer again, but it wasn't. Not sure how many more of these scares I can endure, but for now, I'm going to celebrate the good news. WHEW.
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Great news! Go celebrate!
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Yay!! Fantastic news.Celebrate and take a breath now 🙂
I was in the same boat a couple of weeks ago (benign results as well) and was overwhelmed with anxiety and fear. This is such a crazy roller coaster ride that we never wanted to get on. I'm also considering a mastectomy now since I don't know how to handle this anxiety. Big hug, so happy for you 🤗
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Over many years, during scares of various types, including the one (just one!) that did turn out to be cancer, I've always found these forums to be a great source of information. Not medical advice, which must be individualized for my own situation and can only come from medical professionals who have examined me. But as proof that others have experienced the same symptoms I have and are still alive and well, it's been pure gold. When I'm in that blind panic of scanxiety, knowing only that something is off in my body and awaiting an answer that may change the course of my life — or might not — it's like a lifeline to discover that someone else has experienced the same symptoms I have and didn't have cancer. It doesn't prove anything about my own situation, but allows me to dial down the panic enough so I can function until I have test results. In that spirit, hoping to toss that lifeline to others who may come here looking for that same enough-for-now reassurance, I'm going to describe what's happened to me recently. I may come back to edit later, as it may be unnecessarily rambling and detailed, but for now I'd like to get it out into the universe and move on to other things.
One morning in May, 3.5 years after finishing radiation, I noticed something different while showering. A small patch of skin at the edge of my lumpectomy scar looked slightly reddened. I touched it, thinking it might just be blotchy from the warm water, and the layer underneath felt like it had stiffened up. I called my surgeon's office right away, and had an appointment the very next day. My PA examined the spot and sent me across the hall for a mammogram and ultrasound. The verdict there was that it was likely some form of scarring, and although they recommended a biopsy (and also a six month check on some new calcifications at the lumpectomy site) this really wasn't anything to lose sleep over.
Here's the crucial piece: they were very clear with me that radiation CAN cause changes, even years later, and seemed completely confident that this would be the explanation. I can't say for certain that no one had ever told me that before, but if they did, it certainly hadn't registered that something so obvious could pop out of nowhere like that. If nothing else, I definitely hadn't been expecting visible skin changes so many years later. I was bummed because my surgeon had really done a fabulous job, and now it didn't look nearly as nice as it had before.
I got my biopsy, and even though I was expecting the results to be good, the wait for results was every bit as nerve-wracking as my experience in September 2018. The intensity of the fear caught me off guard. But the results came back as "dense fibrosis and foreign body giant cell reaction," nothing malignant at all. What a relief. But I wanted to know if there was anything to be done about scar tissue: massage? Creams? Laser surgery? So I made another appointment with my PA, asking those questions and also, so I'd know what to expect going forward, also asking if I could expect this sort of thing to keep happening, because if I could just know what to expect, it wouldn't be so frightening. Her answer: "Yes. This is why a lot of women get mastectomies." I hadn't been expecting that answer at all, and it planted a seed.
I was able to put it all out of my mind for a few months, but became more and more anxious as the time to schedule my annual MRI drew nearer (I have dense tissue.) Without really being conscious of it, I knew that this MRI was going to show changes, because there HAD been changes! Deep down I somehow knew to expect a less-than-easy experience. The dread overwhelmed me, and I started experiencing some PTSD symptoms. I found a therapist, who was and continues to be helpful, and was finally able to schedule and attend the MRI without too much anxiety.
But then, the phone call from the PA: "I just saw your MRI results. There are two spots they want to biopsy. BIRADS 4. (My cancer center doesn't designate 4a/4b/4c.) One is a clumped non-mass enhancement near the lumpectomy site, not far from where they biopsied before - it might be more of the same, or might even be scarring from your May biopsy. The other is a linear non-mass enhancement a little farther away, extending between the lumpectomy site and the pectoral muscle. It says there is some new tenting of the muscle, but no enhancement of the muscle belly itself." I thanked her for the information without asking any questions, because I was afraid of what she might tell me. Looking back, it's surprising how devastated and disheartened I felt to learn I would need another biopsy so soon. Even though I knew they would be seeing changes, and also knew that at least some of those changes had already been proved benign with biopsy, I was so hoping not to have to do it again.
It took an excruciating 3.5 weeks until my biopsy appointment finally arrived, which allowed time for 2 more therapy sessions and a Xanax prescription. The MRI guided biopsy was by far the most physically unpleasant of any of the modes I've experienced — and I think I've now experienced all of them — but it finally ended, and within 48 even more excruciating hours I had the relieving phone call listing the 3 different types of scarring they'd found: " Therapy-related changes, abundant mixed inflammation, and reactive cellular changes."
The long wait also gave me plenty of time to think about how much more of these scares I wanted to experience in my lifetime. If I have to get an MRI every year, and if there are going to be changes every year, and if it's always going to take weeks to get in for the biopsy, and each biopsy is going to cause more scarring, then I'm going to be spending a LOT of time and money and anxiety on stupid gross scar tissue. I thought about what my PA had said and thought about how liberating it would be to just be done for good with all imaging forever. So I set up an appointment with a new breast surgeon who does aesthetic flat closure to get some information. It turned out to be just hours after my good results had come in.
She asked why I was looking into mastectomy at this point, as my original prognosis had been quite optimistic and continued to be so: small tumor, node negative, great margins, oncotype 12, and no sign of recurrence 4 years later. She said it would be a different matter if I had a bad gene, but I'd been tested for that too. I said it was because I had had enough of scares, scanxiety, testing, biopsies, and the time and money it was all going to take up over the next many years. I said that when I'd asked what to do about scar tissue back in May, the answer was that many women just get mastectomies. She said that this was not the answer, and there were other options - starting with halting the annual MRIs! This blew me away, but she said they haven't been shown to have any survival benefit, and also that there is some disagreement over their overall usefulness when so may of them lead only to the torturous experience I'd just endured. I'm also likely to become less dense in the future, so mammogram alone would become more effective. It sounds like we may even be able to use some discretion if I get more biopsy recommendations, as I clearly have some verified scarring going on and that is very likely to continue progressing for a while. I'm so glad to have been talked off the ledge regarding mastectomy, even though my knee-jerk reaction was that my emotional distress was being minimized. I was able to articulate that I didn't really want a mastectomy, just wanted off the merry-go-round, and had thought this was my only option. Perhaps most importantly, she really seemed to understand the emotional impact all this testing has on quality of life.
So, here I am, still coming down a bit from the intensity of the past 4 weeks, or 6 months, or 4 years - all of that. They say that many women sail through treatment, doing what they have to do and staying strong, and then the emotional trauma catches up to them long afterwards, when everyone around them has forgotten they ever had cancer and assumes they're cured. That's certainly been true for me. I'm realizing that this breast cancer journey will never really end but will continue to impact my mind and body in different ways for the rest of my life, even no more cancer cells are ever found. I'm learning to be OK with that.
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Also - thanks, Marvies and Alicebastable. Marvies, my recent post is crazily long, but your diagnosis and treatment sound very much like mine. So, hopefully that means your doctor may one day recommend backing off a bit on the surveillance too.
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purplecat, I’ve been following this thread, and I’m so happy for you to get benign results and to receive some solid guidance from the surgeon! I’m sorry for all the stress you’ve been through. I sincerely hope you can take a well-deserved break and have the space to heal. I also chose a lumpectomy, and I’ve already had to rescan due to dense breasts and surgical changes so I feel like these types of scares are in my future too. I’ve had so many providers since diagnosis, and I find that I value those who take into account my sanity the most. Take care and happy holidays!
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purplecat - glad to hear you got good news but oh how stressful to deal with all that. I had a lumpectomy followed by radiation with boost for IDC/DCIS in September/November 2019. I was at 6 month scheduling for diagnostic mammograms until last November when they said I could go yearly and I just had one today that reported benign findings. Of course my irradiated breast tissue has changed but I know that’s to be expected. Best part of today was listening to an entitled woman bitch and moan about having to wait too long for her routine mammogram and calling to see if she could reschedule it at the hospital she usually goes to which is in the same network because she was so aggravated and upset. I suggested she get it today because I had called 8 weeks ago for an appointment because my oncologist wanted me to have it by the end of November because of my breast cancer history and all the other facilities did not have anything until late December or January. The look on her face was priceless and she stayed. Yep winner winner chicken dinner - my breast cancer beats your aggravation over a routine mammogram
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