Fill Out Your Profile to share more about you. Learn more...

Duct Ectasia - new partial nipple inversion

Options
nervousauthor
nervousauthor Member Posts: 22
edited February 2023 in Not Diagnosed But Worried

Hi everyone!

Yes, this will probably be long, but I have to get this out. Back in April, I had my annual mammogram, decided to do the 3D instead of the regular digital. Had a callback for a small mass with diagnostic mammo and ultrasound. Ended up with a Birads 3. So I went back last Wednesday. I was slightly delayed because I forgot and had my Covid booster in October so we scheduled it for this month. Had diagnostic mammogram, again 3D plus spot magnification, and ultrasound.

Good news - mass was smaller and is considered a complicated cyst.

But now - there is a new finding:

Here is the result:

Previously seen nodule in the right upper outer quadrant for which follow-up is recommended is decreased in size. Subareolar duct ectasia redemonstrated. There is new partial right nipple inversion. Scattered typically benign calcifications again noted.

Target right breast ultrasound recommended for further characterization.

Bi-Rads 0 incomplete Needs additional imaging.

I'm between gynecologists since mine closed his office. Can't get an appointment with breast surgeon until Jan. 4. PCP handling this. So of course all this breaks loose in between.

Completely flummoxed and upset - not only that I have to go back for another ultrasound when I was just there - I know, our medical system stinks. But that this duct ectasia wasn't even on the radar!! Redemonstrated? I looked back on several mammograms - not a mention of it anywhere. I don't know whether it's on one side, only one duct, nothing. And if it is only one side, one duct, it should've been on the radar esp since I'm 58! So I feel completely blind-sided!! I feel like if I had known back in April I could've had a biopsy or something then if it was one-sided. Now whatever is there has been there for 8 months.

As for the nipple inversion, I can't even tell. There's no skin reddening, flaking, nothing, and I would've never thought to get it checked out since it looks like my other nipple.

Ugh. I'm just trying to get through this since I have no one to talk to. Ultrasound is scheduled for Monday. 19-year-old daughter just tested positive for Covid so that appointment may be doubtful.

Yikes on all of it!

Thanks for listening/reading!

Rebecca

«1

Comments

  • maggie15
    maggie15 Member Posts: 853
    Options

    Hi Rebecca, Sorry you find yourself dealing with this between gynecologists. Imaging is not perfect and neither are radiologists. Mammograms miss 12% of breast cancers. Sometimes one radiologist will think a characteristic is notable while another doctor might not mention it. The positioning of the breast by the technician can vary from scan to scan. Also, some practices are starting to add artificial intelligence programs to mammogram interpretation which is helping improve the accuracy of the most recent mammograms. The age of the equipment also affects what is seen. I was shocked to see the huge difference in clarity between my imaging from my small local rural hospital compared to that of the large urban teaching hospital I travelled to for treatment.

    Duct ectasia is a benign condition which doesn't increase your risk of developing breast cancer. I'm glad they are doing an ultrasound to make sure nothing else is lurking in the vicinity. I sympathize since I was one of the unlucky ones whose cancer was missed by 5 mammograms over two and a half years even after I developed a palpable lump. I decided to put my focus on going forward with my treatment since getting angry just wasted my energy. I hope you don't get Covid and are able to get your ultrasound on Monday. Best wishes for a good outcome!

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Thank you, Maggie! i so appreciate your response! It's hard to concentrate or enjoy the holidays with all of this going on. And I feel pretty alone going for these tests. I just need some hand-holding.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Just checking in - I had my ultrasound yesterday.

    Results - Images provided of the retroareolar region reveal no discrete cyst or solid mass, however the area of tissue just deep to the nipple is obscured by shadowing. The nipple appears hypoechoic, favored to be within normal limits.

    No idea what that means at all. She didn't say this when she talked to me.

    So now have to see breast surgeon and do MRI. Radiologist said I could take a break because of all this testing? I see why people say diagnosing is hurry up and wait. They don't seem in a rush to find out what's going on even though I'll be a mess for weeks. I don't even know how big an area she means and how big a cancer under there could be.

    Sigh. Frustrating. I don't want to make any snap decisions, but life seems to be going in slow motion right now.



  • maggie15
    maggie15 Member Posts: 853
    Options

    Hi Rebecca, Good news that the ultrasound seems to show normal tissue. However, the radiologist wants you to see a breast surgeon just to be sure since they are experts while the radiologists are generalists when it comes to breast imaging. There are some rare situations where a tumor can be hidden by a benign lesion which is what happened to me. When pleomorphic calcifications finally showed up on a mammogram (in the retroareolar region) and a biopsy showed DCIS, the breast surgeon I went to see was not convinced the diagnosis was correct. She personally did an ultrasound and told me that even though no tumor showed up her gut feeling was IDC. She was right. She saved me from a second surgery by also scheduling a sentinel node biopsy during my lumpectomy.

    The breast cancer world moves slowly. My surgeon said I should have had an excisional biopsy after my first callback mammogram showing “architectural distortion", and 2.5 years later the cancer was still regional. Chances are that nothing will be found but it is a good idea to get the MRI and get a better answer. You can surely wait until the new year to schedule this but you'll probably get some peace of mind by thoroughly investigating. Good luck going forward and try to save the worry for after the holiday season (easier said than done :) )

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Thanks so much, Maggie! I guess I'll be learning a lot. There was all this confusion with two different senior ultrasound technicians locating the intramammary lymph node/complicated cyst over a week between the Dec 14 and Dec 19 ultrasounds. It unnerves me. They were both measuring and measuring my breast trying to find it and both seemed befuddled. Seems there wasn't enough communication between radiologist and ultrasound technician. The very first follow up in April it was easy to find according to that radiologist's report and it hasn't shrunk that much. And it's now almost 2 cm in a different spot. This is hard enough without the professionals being confused. Once would've been a little weird, twice is even more weird. But I have to get off that track. It is what it is.

    I just have to clear my mind and wait.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Just an update for anyone reading and going through something similar. Had consult with breast surgeon yesterday. Very nice and explained things very well. She said we need to go with the radiologist and I should have the MRI. Which is good so I have definitive answers and a check on both breasts. The down side is she said don't be surprised if I need biopsies because MRIs show everything. Not very comforting. Mammos and ultrasounds aren't so bad. MRI with contrast and claustrophobia and then biopsies - ugh.

    The good news - she didn't feel any lumps on physical exam or see that the right nipple was inverted - so I didn't miss anything obvious. I was beginning to think I was crazy. But she said sometimes the radiologist will see a slight tug on the nipple. She's not concerned so I'm trying not to be. She said IF there is something, it's very early because there are no other physical or imaging signs of bc.

    I really am beginning to understand what warriors women are with breast cancer. I can't believe I've been going through this since April, 3 mammograms, 3 ultrasounds, still no answers. There has got to be a better way than all this time and all these anxiety-inducing tests.

  • maggie15
    maggie15 Member Posts: 853
    Options

    Hi Rebecca, It sounds like you had an encouraging visit with the breast surgeon. Biopsies are not fun but if something is seen on imaging it is best to check it out so any problems are caught early. False positives are an issue but my three false negative mammograms (something looked a bit "off" - architectural distortion or stable asymmetric density, always scored birads2) meant that I ended up with a 3 cm tumor and an involved lymph node. It's worth the bother to make sure something like this doesn't happen to you. Good luck with the MRI and let me know how it works out.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Hi Maggie, I am so sorry you have gone through all of this with the false negatives. We depend so much on mammograms and they're not perfect that's for sure. Nor are the radiologists reading them. Even though this is frightening, I don't want to miss anything.

    Thank you for being here and sharing your story and wisdom. Onward toward the MRI.


  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    So the doctor's office called and gave me the go-ahead to make the MRI appointment. They couldn't get me in until February 1 at 8:30PM. So depending on those results and any possible follow up after that, I won't know anything for quite a while. Yikes. By the time I know anything, it will be a year since the mammo that started all this.

  • maggie15
    maggie15 Member Posts: 853
    Options

    The waiting is stressful but seems to be the norm as you go through the process. It was 2 years 8 months from my mammogram callback to the date I had surgery. My tumor would have been smaller if something had been done earlier but I just followed my PCP's recommendations and his reassurance that I had only a 1.9% chance of ever developing breast cancer (based on some kind of questionnaire.) It wasn't until an oral surgeon thought I was immunocompromised since strong antibiotics were having no effect on a post extraction jawbone infection that I eventually booked an annual screening mammogram after my PCP scheduled me for a biennial one since the "asymmetric density" on my last several mammograms was stable and all were birads2. The oral surgeon ordered a facial CT which just showed inflammation, biopsied my jawbone which was infected but not malignant, and sent me for an HIV test which was negative. He put me on IV antibiotics which finally worked but was convinced that I had some kind of active cancer. I don't know of anyone else whose breast cancer was diagnosed by a dentist.

    I'm glad you have a date for the MRI and hopefully it is negative. In retrospect I wish I had consulted another doctor. My then PCP of 30 years who has since retired never communicated with me again after the suspicious mammogram. This was a few months before the law requiring the immediate release of medical test results took effect so I found out that I had a birads4 mammogram when the imaging department called me three weeks later wondering why I hadn't scheduled a biopsy. I learned that the biopsy must have been malignant when an appointment with a general surgeon popped up in my patient portal. Needless to say I travel 100 miles for treatment since my small local hospital is the only option for healthcare in my rural area.

    We are sometimes criticized for being alarmist when we question what we are told by medical professionals. I would have been better off if I had persisted, even though I now know the tumor didn't show up because it was hidden by radial scars, benign lesions. You are doing the right thing by following through.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    I am so sorry for everything you have gone through and are going through. It's amazing that the oral surgeon was the one who set off the alarm bells. A couple of years ago, my kids' scout leader was diagnosed with a melanoma on her scalp following a dental visit. The dentist saw something in her mouth that indicated there was a problem and she went to the dermatologist who found it.

    Thank you so much for sharing your story and for your encouragement.


  • maggie15
    maggie15 Member Posts: 853
    Options

    Dentists do check for oral cancers but the story about your kids' scout leader demonstrates another good reason to get your teeth cleaned regularly. I guess cancer affects more of your body than the area it is located in. There are probably cases of people who are screened for breast cancer but are eventually diagnosed with a different type. Thanks for sharing. You're less than a month away from your MRI now.

  • concernedaboutresults
    Options

    Hi Nervousauthor. I was just reading your story and realized today is the date of your MRI. Good luck and hoping for benign results.

  • concernedaboutresults
    Options

    Hi Nervousauthor. I was just reading your story and realized today is the date of your MRI. Good luck and hoping for benign results.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    concernedaboutresults - Thank you so much for thinking of me! Yes, I had the MRI at 8:30 last night. I have to say, that was the second worst test I've ever had. The first was the uptake scan for Grave's disease which involved my neck being bent up and my head back for over half an hour. Suffice it to say I was nauseated the rest of that day. The MRI - it wasn't the enclosed space nor having the contrast, it was the dang middle of the machine pressing into my chest. No matter what we did with cushions, I could hardly breath. I've never heard of that problem so I don't know how to fix it if I have to do another one. By sure willpower, I made it through the 25 minutes, but I'm feeling it today.

    The doctor was a gem and called at 8:30 this morning. Guess I'm learning MRI terms now, too. So here are the results:

    Right breast: The right nipple does not appear to be retracted. (say what???? that was the whole point of having this test!!! - I knew I didn't see any difference and neither did the breast surgeon but we had to defer to the previous radiologist). At approximately 12:30-1:00, 3.7cm from the nipple, there is a 5.3 mm lobulated masslike structure seen best on images 75 through 78 series 6 and image 52 of series 14. The enhancement pattern is progressive with no evidence of washout. Second look ultrasound is advised. If nothing is seen on ultrasound, given this structure smooth margins no MRI evidence of true nipple retraction and the enhancement pattern, six month follow up MRI would be appropriate. The right nipple, skin, chest wall and axilla are unremarkable. There is no mammary chain adenopathy.

    Left breast: No suspicious enhancement to suggest malignancy. The left nipple, skin, chest wall and axilla are unremarkable.

    Birads 3

    Keep in mind, I had a diagnostic mammogram on Dec. 14 that showed a complicated cyst 3 cm from the nipple at 11:00, which differed in location from the April finding which was at that time 4.5cm from the nipple and considered an intramammary lymph node. But supposedly this is a different structure which was not seen on the Dec 14 ultrasound.

    So, I'm going for my 8th test, another ultrasound on Monday to look at this new mass and check the one from Dec. 14. I'm right back where I started.

    BUT yes I am very grateful it's a Birads 3 and not a biopsy straight away. Less than 2% chance of cancer. At least I won't be a total mess Monday.

    Now that I'm in the testing loop, I can't believe how much women have to go back and forth and back and forth between tests and it's taken 10 months from the original mammogram and I still don't have a definitive answer. I know things can be hidden and that causes delays. But to go through 3 mammograms, 3 ultrasounds, an MRI with contrast, back to an ultrasound. It's enough to drive a person insane. I feel like I'm permanently in the scanxiety loop now.

    Thank you for letting me vent! I hope I get a break with this chain of tests after Monday.

    God bless all on this journey!!



  • maggie15
    maggie15 Member Posts: 853
    Options

    Hi Rebecca, Good news that you are still Birads 3 but that number of scans for one issue is insane. I thought I was on the scan train. I had a thyroid ultrasound on Monday (thyroidectomy 4 years ago but thyroid is growing back and deviating trachea), MRI yesterday (torn meniscus in my right knee), DEXA scan next Monday, mammogram/ultrasound in two weeks and HRCT next month (lung nodule and trachea opening surveillance). My kidneys are thankful I haven't needed contrast for this lot.

    I hope Monday's ultrasound is good and you finally get a break. Keep us posted.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    I'm glad I'm not crazy thinking 8 scans is insane. As far as I'm concerned, this should've ended on Dec 14 with the 6 month follow up mammo and ultrasound to the original mass. I went through the rest of these tests because of a non-existent nipple inversion. I'm still questioning whether that nipple inversion was a mix up because the ultrasound technician was so confused about what she was supposed to look for and thought those weren't my results. But the radiologist insisted they were. It seems every scan I do is showing a new something-something they want even more scans for. But when 3 ultrasound technicians were taking out a tape measure to check the location of what they were supposed to be scanning, I was skeptical. I'm going through with them because I don't want to be stubborn and miss anything. But none of this has seemed right since the Dec 14 follow up. I wonder what the record is for scans of one breast in a year.


  • alicebastable
    alicebastable Member Posts: 1,939
    Options

    Some ultrasound techs measure everything. It doesn't signify problems. I had one last week and the tech was whipping out her little ruler every time she moved the thingy. I think it's just to plat out where exactly they've scanned, for the report.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    I don't think the measuring was a problem. The getting frustrated and upset after scanning and measuring and scanning and questioning me about who ordered the scan and why and talking about mix ups and miscommunication... Never experienced that before. Techs usually quietly do their thing and send you on your way. I'm just frustrated because I feel I have incomplete and conflicting info. Hopefully the breast surgeon can clear all of this up when I see her Monday so I have what I need to move forward past all of this.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Well, the beat goes on. After ultrasound today, I have to have a core biopsy Feb 15. And the best part - the radiologist and the breast surgeon don't even agree about what is or is not there. The radiologist insists there is a nipple inversion because the mammogram from Dec 14 said so. And the breast surgeon said no, the MRI from Feb 1 prevails and there is no nipple inversion. Which doesn't change that I have to have a biopsy, but is one factor of whether the masses they found on ultrasound are cancer. And the fact that these professionals don't agree is not reassuring. The radiologist was peeved when I asked about it because of the conflict with the mammogram and the MRI. She's sure she's absolutely correct and only saw the mammo report, not the actual films.

    Results - Possibly corresponding to the MRI finding, in the right breast 12-1 o'clock 3 to 4 cm from the nipple, there are 2 immediately adjacent indeterminate hypoechoic masses, one measuring 4X2X6 mm and the 2nd measuring 5X2X6 mm. Ultrasound guided core biopsy recommended. This can be performed as one biopsy.


    So I guess the lobulated mass from the MRI was really two masses. Breast surgeon showed ultrasound, explained it's good that they're more wide than tall. I remember from the MRI the mass had smooth margins and was a type I enhancement. It was rated birads 3 because it was smooth, and type I, and because there was no nipple retraction. Eeeesh. So I'm still going to hope it's benign. The breast surgeon said they were biopsing them because they were forming structures, no other sign of malignancy, no spiculations or irregularity.


    Now I'm birads 4 - Suspicious, but no indication of a,b,c - the nurse coordinator said 80% that it's benign.


  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    So I was just reading about multifocal breast cancer. Yikes.


  • maggie15
    maggie15 Member Posts: 853
    Options

    Wow! All these scans are turning into a debate between doctors resulting in more confusion in which you are just an observer. Hopefully the biopsy will come up with some answers. I wouldn't worry about multifocal breast cancer just yet. I think it was easier for me thinking all was well for two and a half years and being hit by the diagnosis suddenly. It saved me all the anxiety you have had to deal with.

    Spoil yourself on Valentine's Day. Find a sports bra and small ice packs for after the biopsy; this really helped the swelling and bruising which was actually only moderately painful. Hoping for benign results.


  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Thanks, Maggie! Yes, I had anxiety before this started now this has completed disrupted my life since April and has only escalated and escalated. Every scan brings a new finding which makes me nervous. I was just thinking this morning - why did the MRI results not see 2 masses? The breast surgeon says MRI is the best. How could it miss an adjacent mass to the one reported? I find it hard to believe that a mass showed up between Wednesday and yesterday.

  • maggie15
    maggie15 Member Posts: 853
    Options

    Hi Rebecca, While MRIs are not 100% accurate they seem to detect malignancy best. I have a lung nodule that is slowly growing on CT scans but did not light up when an MRI was done. My pulmonologist thinks it is probably caused by continuing inflammation but since it is getting bigger he keeps an eye on it (the scans never stop.) He also warned me that just because something does light up it is not necessarily malignant. I hope your doctor will biopsy both areas so that nothing will be missed. The bc merry-go-round has made me learn all kinds of things I never knew about!

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    The merry-go-round - perfect description! And a roller coaster. One minute, I'm okay, the next I'm a weepy mess. I think after 10 months and looking at a 9th test, it's really getting to me. When they handed me a biopsy folder and assigned a nurse navigator, it felt like I was already going down a very scary road.

    Everyone says don't worry, ha, that ship sailed. Like going from a 2% chance of malignancy on the MRI to 20% after the ultrasound is reassuring. And how many women my age - 58 - have benign solid lumps, not one, but two? And this second lump seems to have shown up 5 days after the MRI unless they didn't mention it on the MRI, which is weird considering they're right next to each other. I really thought after the MRI, I was in a pretty good position. Looks benign, smooth margins, wider than tall, progressive kinetic curve. Then I started thinking about triple negative, that's very aggressive. But wouldn't they have seen signs of that on the MRI?

    And why did the radiologist and breast surgeon say well you could decide to wait 6 months but we recommend biopsy? If it was that bad and a chance of triple negative, why would they say that? And if it's really cancer, why give it a chance to grow? I liked the MRI results better. And the breast surgeon says she goes with MRI for the nipple inversion, but not the birads 3.

    Aaargh, my head is a mess. I'm trying to talk myself out of cancer every which way. And my family and friends are sick of hearing it. Husband says there's nothing I can do, so don't worry.

    I know, I know, it's better to do this biopsy now and stop with this waiting around.

    The worst part of all this is thinking about my daughter and the future. Ugh.

    Thanks for letting me vent. It's good to have a place to go.


  • maggie15
    maggie15 Member Posts: 853
    Options

    Hi Rebecca, The roller coaster of emotions is a great analogy. As far as I'm concerned, go ahead and vent; this is a safe place to do that. My husband never wants to hear about my health problems other than a quick one sentence summary after appointments, but having been with him for 53 years I understand where he's coming from. His vision of the future was changed when the possibility of him outliving seven years younger me reared its ugly head. He loves and silently supports me; he never complains about having to live the lockdown life I have to because of my lung issues. Things should get better for you once you have biopsy answers and a clear way forward.

    My pulmonologist provided me with a mantra I use all the time now when things go wrong with my health or treatment. I was sent to him by my RO when I ended up with progressive radiation induced pulmonary fibrosis (very rare) and my right lung was filled with consolidation and entirely useless. Since I'm generally an optimist I remarked that it's possible to live with one lung. After telling me the fibrosis could progress to the left lung he answered my query of how likely that would be with a story. Knowing that I was a math teacher he told me his daughter in fifth grade had come home from school and said, "Daddy, math is magic! You can use it to solve all kinds of problems!" I laughed and he then said, "Math is magic, medicine is not." I say this whenever I think about my missed diagnosis, my PCP ghosting me when I developed bc (I scheduled a mammogram he said I didn't need,) or the pulmonologist's comment that a lung cancer radiologist (as opposed to a breast cancer radiologist) would have seen the red flags in my medical history. I also repeat the phrase to deal with the side effects of the steroids I have to take or when there are no answers about an uncertain prognosis.

    It seems kind of weird to look forward to a medical procedure but after all the conflicting scans the biopsy should clear things up. Until Tuesday cross the days off the calendar with a big red marker!


  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    Seeing someone is probably a very good idea. I know I went down the rabbit hole reading too much on here and venturing into the triple neg forum with someone having two masses side by side and thinking they were fibroadenomas and they weren't - yeah, it's easy to do. And I don't think I ever accepted my best friend passing at 51 - she was diagnosed in July 2013 and passed in Oct 2013. I didn't even have time to process it, so that's not helping. I've often thought of going to see someone and will have to ask for referrals.

    Thanks, Maggie. It's amazing you have been through so much and still going strong. Not really looking forward to this biopsy. But it's already there, or it's not.

  • nervousauthor
    nervousauthor Member Posts: 22
    Options

    An update -

    Had core needle biopsy yesterday around 2:00. All went well. Not the most fun procedure I've ever had. But compared to the MRI, it was better. Radiologist was super. She said afterward that there was a low suspicion of breast cancer so I held onto that. She also said results would probably be in on Friday.

    Not doing too bad - I iced the breast constantly until I could take the wrapping off. Then every hour or so and a little overnight. Took the bandage off today and left the strips. Looks pretty good. Not too sore.

    Around 11:00 I got notification that the test results were in the portal. Yeah, I couldn't look. But I was shocked they came in this fast. Breast surgeon called about an hour later. She's a gem.

    So everything is BENIGN - all normal breast tissue!!!!!!!!!!!!!!!!!! After 3 mammograms, 4 ultrasounds, an MRI, and a biopsy! That was a marathon!!!!! I'm breathing normally for the first time since April. Of course, I will go back for follow up imaging in 6 months. But the only reason I kept going and going was so I could have an answer and not wait to see what these masses did or did not do.

    And ladies who are over 50 - masses can be benign!!

  • cozyrad
    cozyrad Member Posts: 29
    Options

    I'm so glad to read that it was good news! Thanks for keeping us updated, and for your supportive comment on my own post.

  • maggie15
    maggie15 Member Posts: 853
    Options

    Wonderful news, Rebecca! All the waiting, conflicting opinions and extra scans fade into insignificance when you get a benign result. I'm glad they are going to keep an eye on this but it must be such a relief to finally get the answer everyone hopes for.