Worried sleepless :(
Hey everyone! New member but long time lurker. I found so much comfort and information when my mother was going through Stage lV BC with mets to brain and spine a few years ago, so I want to thank all of you for your courage and kindness in sharing your experiences, educational information and stories with one another because it helps so many people you may not even be aware of just as much as it helps you through this journey.
I'm going to try my best to keep this short. I appreciate any responses and feedback I may get. I'm super triggered and in a horrible state of anxiety at the moment. As mentioned my mother had BC and sadly she passed 2 and 1/2 years ago. Unfortunately she got her late stage diagnoses 7-9 years AFTER finding a lump and choosing to ignore it. She wasn't sure of the timing and never had a mammogram in her life (diagnosed at 65). She only went to a gyno when she was pregnant with me and my brothers despite having health insurance and being a well educated women the entire time and refused to have the tumor removed. Needless to say her doctors were baffled and frustrated as were my siblings and I. My parents withheld this information from us the entire time until they no longer could. She was forced to have treatment or become paralyzed from the tumor crushing her spine so finally went to the ER because of the pain and was “officially “ diagnosed. Anyways - she refused to get the genetic testing done that would allow me to have it covered by insurance. Claimed her oncologist said she most likely had something benign all those years ago and had she had it removed they would have sent her in her way and told her to check in annually but due to her not checking it out it slowly grew over the years and mutated so that there was no need to test for the gene. This sounded off but it was out of my hands. Personally I think she had guilt and couldn't face the result but claimed we don’t have breast cancer in our family and I tried to explain that we certainly do now. I'm sure I made her sound awful. She was a wonderful women. I just don't agree with the choices she made but acknowledge they were hers to make so I tried to make peace with that. It's a work in progress but I clearly have a level of PTSD from being blindsided. It wasn't my first traumatic loss as well and it was extremely hard to watch her go through a rapid decline and only do the minimum of what the doctors were telling her to do.
I'm 43 and had a breast reduction 15 years ago. I have a lot of visible exterior scaring as well as internal from what I am told. I also have dense lumpy bumpy boobs and have been concerned that I have a hormonal imbalance and starting pre-menopause. I have my annual pap in a few weeks so I plan to discuss this. I just had a 3D mammogram yesterday and I cried through the entire thing. The tech wasn't the friendliest and made a lot comments at the end about the possibility of being called back. I asked why she would say that and that I hadn’t been warned this way in the past and she said possibly they would be comparing the new 3D to the old 2D and because of my breast reduction scaring. I should also mention she did the 2D yesterday also so I feel like that's a lot of radiation at once. I went with it because it is more detailed. She also took an extra 2D on the left side which freaked me out. When I asked about it she was very short with me saying she isn't a doctor but would be happy to let me look at the pictures which I did. That she wanted to pull my boob over further and showed me a white fuzzy area low down on my breast and away from my nipple. This was close to my ribs and chest wall and she felt part was cut off so took a picture. Obviously I have no idea what to look for but I tried to and tried to put everything to memory lol. It seemed consistent to the area my reduction scaring would be and was all black around it for inches. It looks like a lot of google images for scaring. I had white veiny lines in a cluster in the center area towards my nipple.
I'm in so much fear due the vibe in the room and now today out of no where I have shocking sharp pains in my right armpit. It woke me up in my sleep every few hours and has come and gone all day when I move at times. I feel this has happened every few years and it's gone until the next time it happens. Figured it was a nerve thing from my breast reduction but now I'm paranoid it is related to my breast and panicked they will call me in for more testing. I don't know how I feel about exposing myself to radiation again since it can also cause breast cancer according to some. I thought the 3D was a clearer picture so could scaring come up as inconclusive or concerning? Will I be forced to have another mammogram if so or can I opt for MRI and or an ultrasound? I'm scared of making a mistake and causing issues later but I also am worried my scaring may lead to quick judgements. Am Ibeing difficult to think this and letting this weird experience and my past get in my head?
I tried to search for breast reduction or surgery scaring history that was there prior to a diagnosis but I couldn't find anything. Anyone with knowledge of how this could affect future breast cancer would be appreciated.
Comments
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LadyBuG007,
Welcome to Breastcancer.org. We're so very sorry for the worries that bring you here, but we're really glad you've found us and decided to reach out. You've certainly been through a lot and of course your concerns are valid. It's very likely your doctors are just wanting to compare your scans as 2D and 3D mammograms show different things, and if you don't have a baseline mammogram for your doctors to refer to, they'll be wanting more imaging to establish your "norm." It's nerve-wracking for sure, but the more information you learn about your breasts, the better. Just try to hang in there until a doctor can interpret your results and make a true call on what should be your next steps.
In the meantime, given your mom's history, have you discussed genetic testing with your doctor? It's likely you'd qualify for testing and that might help give you more direction, too.
We know it's a lot right now, but we're glad you've reached out. Others will be by shortly to weigh in with their advice and support, but try to keep a clear and calm head until you know more. We're all here for you in the meantime and beyond!
Let us know if you need anything at all!
--The Mods
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Thank you for your kind response! I have two children and 4 siblings so I would love the genetic testing. I was under the impression my mother would have had to have it first in order for mine tobe covered by insurance. I haven’t looked into the cost of a private test. If you are positive for it doe you get more screenings or is it just good information to have for younger generations?
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I'm sorry about your mother and what your family had to go through. It sounds like a lot of misinformation was given to you at that time, and that is affecting the way you see routine exams and imaging. I'm trying to figure out what you meant by a "vibe in the room" at your mammogram. It sounds like the technician was extremely helpful. She was wearing a mask, right? So you couldn't see any expression. The 3D mammos almost always require a call-back the first time. Of course your old scar tissue shows up, and the radiologist will need to look at those areas more carefully. The technician is not allowed to discuss anything like that with you.
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sometimes we just don't know how triggering something is going to be until it is too late and we are in the thick of it.
Tons of people get called back for diagnostic mammos and nothing is found so def. this is very common. That being said based on your scaring I think you would probably have a good case to get your doctor to put in an order for an ultrasound for your peace of mind.
You can also get a referral from your doctor or look for genetic counselors in your area, they can let you know about insurance covering testing. If they look at how old your mom was when she found the lump (approx 55 ish? ) that's relatively young and lends credibility to your request. (personally as someone with a genetic mutation I'm all for everyone getting the testing so we can have a much better database- but you know privacy and whatnot )
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LadyBuG,
Lots of good info here on our main Breastcancer.org site on Genetic Testing, including who should get tested, family relationships, finding a genetic counselor, and what to do when you get your results. We hope this helps!
--The Mods
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AliceBastab
By vibe I meant her shortness in her response and overall demeanor while administering the mammogram. You are correct, she was wearing a mask as was I, but considering she had a women streaming tears from start to finish she didn’t seem to have any bedside manner or compassion for the anxiety I was experiencing. I warned her that I would probably cry before we started so she wouldn’t think I was in pain and that I suffer health related anxiety. She responded by saying “that’s ok”. Which is fine. I didn’t expect a hug but the process just seemed impersonal considering she was moving my breast around and by nature had to be in my personal space I guess. Felt transactional for a medical environment in a way.I absolutely understand they aren’t there to diagnose or discuss their findings as they aren’t radiologists but even with a mask you can read people’s body language and tone. I didn’t ask if she saw something bad. I just asked why one needed it and not the other. I could have breathed wrong or moved. It seemed natural to ask since she made the comment it was going to be an extra compression. The other question I posed was because they have my last 2D results from my previous doctor and she took both 2D and 3D xrays for comparison so I was confused as to why she was confident I would probably get a call back was all. She had pointed out it would be at the hospital not in their office since they don’t do diagnostic testing so it was a lot to take in so I was just trying to understand. I was also emotional so I could easily have taken a comment in a way other than how it was intended but my previous mammogram experience was much different. It is possible I misinterpreted her demeanor or maybe she was having a bad day which happens to us all. It’s hard to explain I guess. Just the feeling I left with.
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Thanks for genetic testing info! I’m going to look into this as soon as I’m through this current waiting period. Not sure how much my nerves can take all at once. It is something I would like to know though.
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"I tried to search for breast reduction or surgery scaring history that was there prior to a diagnosis but I couldn't find anything. Anyone with knowledge of how this could affect future breast cancer would be appreciated."
I'm not sure I understand. Are you asking if your breast reduction surgery scars might develop into cancer or increase your risk of breast cancer? If that's your concern, the answer is "NO".
As for the tech's vibe, remember she spends 5 days a week, 8 hours a day in other women's personal space, moving their breasts around. For her, it's a job. Some medical professionals have good bedside manner, and others don't. And maybe she was having a bad day or has serious personal concerns. From what you describe, she was helpful and accommodating. Her attitude most likely has to do with her, not you.
Yes, 3D mammos are clearer. So this means the scar tissue will look different than on the 2D mammo. It's perfectly reasonable then that further investigation might be necessary, to confirm that what's seen is nothing more than scar tissue. Comparing closely to the 2D imaging might be enough, or maybe you'll be asked back for a magnified view or ultrasound.
Let us know when you hear back.
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Bessie
Sorry if the part about my scarring was confusing. Reading it back I can see I wasn't very clear. I was searching past posts to see if I could find any information and experiences with women who had breast reduction scars in general. I'm not concerned they could turn into cancer I was just curious if they create confusion and/or to what degree they can complicate the screening process. My previous mammo was 2D and was read the same day. They didn't feel the need to do an ultrasound and sent me on my way.I don't disagree with most of what you mentioned about the tech and I also mentioned she could have been having a bad day. I'm just explaining what my take away was as a nervous crying patient with no medical background and who has limited knowledge on all of this. She may be in the environment everyday but I'm not. I never meant to imply she wasn't helpful or wasn't doing her job to the best of her ability. I said she wasn't friendly and her responses felt short in my opinion leaving me feeling a little unsettled. I almost felt like she knew something I didn't and was preparing me yet wasn't saying that. My last experience the tech was very reassuring, personable and tried to put me at ease. I didn't feel this way so for me it seemed off in comparison and increased my anxiety. Maybe it wouldn't have for others and that's great.
I'll be sure to update when I know more.
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Things are very different and stressful for medical workers this year, having to worry about catching Covid from the stream of patients they deal with. Since you were so distraught, she may have thought you wanted to get the mammograms over with as quickly as possible. And, a lot of women prefer the technicians to be polite but impersonal since they're having to handle what is usually seen as an intimate body part. I know I prefer to get in and out as fast as possible with minimal chit-chat.
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Here's one study on post mammoplasty radiology and appearance of scarring on mammograms.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4485814/pdf/ucd-31-2-68.pdf
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"I said she wasn't friendly and her responses felt short in my opinion leaving me feeling a little unsettled. I almost felt like she knew something I didn't and was preparing me yet wasn't saying that. My last experience the tech was very reassuring, personable and tried to put me at ease. I didn't feel this way so for me it seemed off in comparison and increased my anxiety."
And what AliceBastable and I are saying is that you are reading something into her behaviour when you should not be. You are choosing to interpret it in one way because of how you feel and your past experiences. We are not disagreeing with you but trying to reassure you by saying that her attitude could be caused by a million things.
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Melissa
Thank you! Gonna read it now!
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Beesie
Oh I’m for sure reading into it. I honestly can’t control it. My anxiety is an issue for me. I appreciate your responses. I hope I didn’t come across any other way.
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The anxiety is tough to control. I have a little mind game that I use when I starting fixating on worst case scenarios. I figuratively give myself a 'slap upside the head', usually accompanied by the words 'You idiot!'. And I visualize it. If nothing else, it makes me laugh, and that tends to get my mind off the bad thoughts, at least for a while.
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I'm so upset and aggravated. I just checked my MyChart and has a message that the results of 2D and 3D are both inconclusive due to patient motion! Now they want to do them again! This seems like a lot of radiation for a screening in a months time. I don’t know what to do. The did multiple passes. I just don’t understand how one view from both types could all be unreadable but the other view is fine.
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LadyBug - it's been my experience when I can't stay still enough that I take a small Xanax. Your doc should be able to prescribe that for a one time use. Or based on your previous posts, maybe you already have an RX for Xanax or Ativan or... Doesn't look like you really have much choice than to re-do the mammograms.
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Update- scheduled a follow up to re-take images of the view that is blurry so it can be compared to my previous 2D. My doctor spoke to the radiologist and both the 2D and the 3D of the “cc “ view were indeed both blurry. Radiologist said the other view on both scans look good and nothing of interest. Radiologist suggested having me just do a one picture on each side in 2D for comparison. I have to wait 3 weeks before they could get me in.
In the meantime time... I can’t even believe I’m about to write this.. my aunt calls me, my mother’s sister.. and she coincidentally had a mammogram the same time as I did and had a call back. Now tomorrow they have to biopsy something suspicious as well as a lymph node they said looked “funky”. She is a nervous wreck and it totally has me rattled. I feel so extremely triggered by all of this. I didn’t want to start another thread if I shouldn’t but wanted to ask if it is common for a first call back to lead to a lymph node biopsy? My aunt said it is not far from the site of the other biopsy they are doing. -
I had a lymph node biopsy with my workup No big deal. The radiologist told me before she did it that she would be surprised if it amounted to anything and it was, indeed, benign.
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LadyBug - so sorry your aunt felt she needed to unload on you. I get the triggering. Melissa is right. Not time to worry about something else again.
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Thanks guys! I can’t wait to have this comparison mammo behind me so I can just move forward. My gut tells me that all is well but the amount of emotional stress that comes along with this is out of control for me. I wish I could say it wasn’t but it’s just how I am unfortunately. I really appreciate everything everyone has responded. I will update each time I know something.
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KadyBuG007:
I've often wished radiology worked more like other specialties where they sit down and go over the images with the patient to explain things and answer questions.
I typically can't read anything from the bedside manner of the technicians...I would hate to play poker with them, but I'm not the best at reading people to begin with. Sometimes during scans I see them pick up the phone in the control room and I wonder if it's a "We have a problem" call but it has never turned out to be.
I think a lot of people share your fear of "causing something" but most of the time we have no way of knowing what, if anything, we have prevented. Life is full of surprises and unanticipated events and it's futile to try to predict them all. Occasionally I meet nonarians or centarians and I always like to ask them if they have and wisdom or advice. A common trait I have noticed among them is they tend to have a laissez faire attitude about life.
That isn't to say you should never have concerns, worries or take preventative measures, but you should try not to let worry consume you.
Radiation can cause cancer but it can also detect and destroy cancer. In the health care environment, I think it has detected and destroyed more cancer than it has caused or will cause. Some medical imaging such as PET/CTs pose a non negligible risk but the radiation from a mammogram is miniscule in comparison, particularly if you have not previously had a lot of radiation exposure.
I think your risk of getting cancer and dying from a yearly mammogram is significantly less than dying from more common things such as a car accident.
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My aunt‘s lymph node came back fine but the other biopsy is malignant
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UPDATE- mammo was all clear for me. My aunt has her lumpectomy Wed and they don’t think she will need anything additional but a mammo very 6 months. She will know for sure after surgery. Thank you to everyone who responded to me and for the genetic testing info. After the holidays I am going to look into getting an appointment with a councilor.
Sending healing vibes to you all! This is such an amazing and strong group of loving women and I’m so grateful to all of you. Youwill be in my thoughts and prayers.
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Great news, LadyBuG. Thanks for letting us know. And now hopefully your aunt's pathology looks good too!
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Happy for your all clear! And your aunt sounds like she'll be just fine after a very basic surgery.
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