Architectural Distortion & Falling Apart

nightcrawler

"It's not the enemy you see that gets you; it's the one you don't." -- Michael Westen, "Burn Notice"

Because I have no family history of breast cancer, I wasn't too worried about getting screening mammograms. I'm 46 and got my third one earlier this month. The first two were fine, so I figured I'd just get the "within normal limits" letter again.

I didn't get that letter. On Tuesday, I got the Pink Letter of Doom (yes, it was printed on pink paper), notifying me that my results "required further evaluation." I was hopeful that, just perhaps, because I have dense breasts, they just didn't get clear pictures.

But that's not what happened.

I had a diagnostic mammo and an ultrasound today, both of which showed an "architectural distortion" in my left breast. No mass, just the distortion, about 1 cm. The lymph nodes appeared clean. I don't feel anything on palpation. I have a biopsy scheduled next Thursday.

I did some Googling, and from what I saw, these things have a *very* high probability of being malignant. Everything I read was really, really bad. I'm completely losing it, which I can't do, because I have a business to run; I'm self-employed and work from home, doing marketing for cyber security firms. If I don't work, I don't make any money, and I'm the primary earner right now.

I don't know what to do. I'm worried not only about cancer -- bad cancer -- and treatment, but continuing to work during it. I'm a mess.

exercise_guru

I remember well when I was called back for a biopsy. I was panicked and an emotional wreck. To be honest in hindsight it was the most exhausting time in my entire treatment plan.

Try to stay calm. First you have good odds that its not cancer. Second if it is don't panic because once you find out either way you can make a plan. I can say with some certainty that you will be able to keep your workload and find a path forward. Many women here work through treatment. It actually helps because it keeps life normal.

For now try to not get to far ahead in your thinking. Maybe ask your GP for some Ativan to help with the anxiety and stay busy. I know its easier said than done but worrying really saps your energy. An "Architectural Distortion" could be anything. Mamograms show all kinds of stuff and a majority of it is benign.

MTwoman

nightcrawler,

I am sorry you are here with breast health concerns. There is a thread here on anxiety that may help you while you wait for your biopsy appointment and results. https://community.breastcancer.org/forum/83/topics/855477?page=1#idx_9

There are also some statistics that may help you as well:

So 80% of biopsies are B9. Also, please don't use google, there is quite a lot of misinformation there, and it will only increase your fear. Use sites like this one that has scientific information if you want to look for others with similar presentations. Good luck for B9 results.

octogirl

Nightcrawler, of course you are a mess. I am so sorry you are in this position. As others have and will tell you, the waiting is the hardest part. Try to keep busy until after the biopsy results: if your worst fears are confirmed, you can deal with getting a plan in place then. Until you have information, there really isn't much point in googling options (and much of what google tells you is outdated anyway).

That all said, I have to add: I was horrified to read that your letter was on pink paper. For that matter, I was horrified that the news came via a letter. I've had both 'good' and 'bad' mammograms and biopsies and in each case I was either told results on the spot, or, if there had to be a wait for results, I was told that good news came via a letter, bad news came via a phone call. Indeed, I just had a biopsy for skin cancer (which was B9 thank goodness) and they told me that if I got a letter in the mail I didn't really need to even open it: 'if it comes in the mail, it is good news.' Honestly, if it were me, at some point when I was ready I'd let whatever care giver wrote that 'Pink Letter of Doom' know exactly how you felt receiving it. I think they should be ashamed of themselves for using pink in that fashion, and for that matter, I think it makes no sense for such news to come in the mail (what if it got lost in the mail? What if a family member mistakenly tossed it before you got it? Shouldn't there be a phone call so they know you have the info you need to move to the next step?). I am so sorry that happened to you.

Sending hugs;

Octogirl

nightcrawler

Thank you so much for the encouragement. I am glad I signed up for an account here, because if I do have cancer, I will need the support. My husband and I are kind of isolated. We've been living in Florida for less than two years, and since we both work at home, we don't know many people. Most of our family members are dead other than my mother, who is in assisted living about three hours from here.

Ironically, I'm a marathon runner, and I've done the Donna breast cancer half marathon twice. It had been on my wish list, we signed up for it as soon as we moved to Jacksonville, and it ended up being my first Florida race. I had been thinking of signing up for the full 26.2 next February. Now, I definitely want to tackle the full, especially if I have cancer.

nightcrawler

I did get a phone call -- about 20 minutes after I retrieved the letter from the mailbox! I'm thinking they sent it on pink paper to draw my attention to it, but it was bizarre. I never expected a letter; I, too, thought that doctors always phoned if they found something bad on a test.

I called it "The Pink Letter of Doom" when I went in for my scans today.

Bonniebelle

I don't find the paper color strange.Perhaps the pink paper is referencing "breast cancer awareness" when I was called back for additional views for my mammogram, my letter was not on white paper neither. Stay calm, I know easier said than done. Good luck with your results.

LoveT

Nightcrawler

I know how hard this is. It totally sucks at the moment and pretty much nobody can talk you out of it! I, too, had test results of architectural distortion. Plus assymtry & a measurable possible abnormal mass (very recently.) It seemed like years to get my results (but not really/about 5 days.) I am a rational person with a pretty darn good positive outlook on life. But this will shake your shoes for awhile no matter how tough you are, it's ok to freak out just a bit. There is a lot of great info on this site/forums. Plus a whole lot of great folks who know exactly what you're going through & are amazing support! After my core needle biopsy, the tech gave me an ice pack. He exclaimed " look. It's even wrapped in pink!" Wtf?BTW, I was diagnosed with radial scar & LCIS, with a lumpectomy wire biopsy in June to rule out anything else. Best case scenario for now (even though not totally out of the woods.) But I feel blessed, even though it felt like doomsday recently. You can get through this. But it does get waaaay better when you get answers either way. Sending you many positive thoughts/prayer. Stay strong!

nightcrawler

I'm turning to my running to deal with this.

I ran a 5K this morning. I got a great time for a back-of-the-packer like me: 34:08. That was a practice run; my husband and I have a 5K race on Monday.

I'm going to run at least a 5K every day until I get my biopsy on Thursday. Then, as soon as I'm able to get back on the track again, which should be within 48-72 hours, I'm running every day until I get my results back. Afterward, I'll know what's ahead and what I can plan on doing in the coming months.

I wanted to do some more half and full marathons in the fall, and the Donna race next February, and maybe I still can. I see there's a running thread here on BCO. If the worst happens, y'all will be seeing me on that thread.

runor

Nightcrawler:

I can only imagine that pink paper hit you like a hammer to the side of the head. I didn't get a pink paper. I got a phone call telling me to show up for a diagnostic mammogram and ultrasound. Whaaaatttt? My mamm showed an area of architectural distortion. That was later called a radial scar or complex sclerosing lesion. That is fancy talk for a radial scar, but bigger. Most radial scars are tiny and most are NOT cancer. Mine was large (2.5 cms) and mine is cancer.

I am not going to tell you not to worry because this is a HUGE worry for most women. This is the news that there are bears in the woods, wait, breaking news, the bear might be in the same room you're in right now. Not sure, but he might be really close. In this setting worrying is pretty much guaranteed and you'd have to be either super human or medicated as hell not to worry.

At this stage the best thing to do is force yourself to do something. Scrub the toilet. Fold laundry. Pull weeds. Just keep your hands busy. You may still be crushed by anxiety and black thoughts, but at least the toilet will be clean and your laundry will be done. I wanted to lay in a heap and cry and close my eyes and wish it all away. I DID wish it all away. Didn't work. I tried anyway.

You are not a baby. Not hysterical, not crazy, not a wuss. You do not have to be positive, you do not have to be strong. You can quit answering the phone for a while. You can say to your husband, "Yes I AM spending the day in bed and no I am NOT going to brush my hair and yes I AM taking this bottle of Jack Daniels with me and NO I am not sharing it and no I will NOT be making dinner tonight!" You are entitled to a few moments of being unreasonable.

Once you know more this site is an excellent resource to bring questions to. As others have said, be wary of Dr. Google. You probably should stay off the internet altogether, but you won't, so just be aware that you have to read A LOT to get a clear and unbiased picture of the state of cancer treatment today. It is a much bigger science than I ever imagined.

I am sorry that you got that pink paper. I hope for you that it's a pink paper excusing you from this class!

nightcrawler

UPDATE: I had the biopsy this morning. This thing hurts like an SOB, largely because they inadvertently caused a small external hematoma; I felt it happen when he took the second sample. But I've got severe endometriosis, and I'm a marathon runner. It hurts less than running injuries that I've powered through during races.

I found out that my AD is BIRAD 4.

I should get the results back on Monday or Tuesday.

ohioproud

I hope for good news for your biopsy.

I have been recalled for another mammogram with possible ultrasound for an architectural distortion. So I am also freaking out. Back tomorrow for 2nd mammo, and hoping for the best.

Moderators

We are hoping all is benign for you All!

nightcrawler

I still haven't heard from them; I had my phone attached to me all day yesterday, and it's still attached today.

I'm starting to wonder if a benign result will result in a letter, and a malignant result a phone call. The biopsy aftercare sheet just says, "You will be *contacted* within 3-5 days by the Breast Care Center or your physician." I put the emphasis on "contact" because that's rather clever wording. Contact doesn't necessarily mean a phone call; it could mean a letter, especially if the result is B9.

Now, I would like to think that if they found a malignancy, they would call me instead of sending a letter, but being as I received an initial Pink Letter O' Doom, I don't trust them.

If I get a letter informing me that I have cancer, I'm going to go nuclear.

Edited to add: On the positive side, I ran a 5K two days after my biopsy. I was pleasantly surprised that I was able to run; I had thought I might have to walk it, since I have a lot of bruising from the biopsy. It was sponsored by a breast-cancer awareness charity in celebration of Cancer Survivors Day, which was on June 4.

ohioproud

Still hoping for good news for you, Nightcrawler.

I had my second mammogram and an ultrasound today. They found a small mass (1/4 inch) and the lymph nodes look clear. Radiologist thinks it's a 50-60% chance of malignancy, based on what she sees. Needle biopsy tomorrow. Have I mentioned that I'm having knee surgery next Tuesday? When it rains it pours I guess. I am still pretty freaked out but staying calm for my husband and son.

Blessings all.

nightcrawler

It's invasive ductal carcinoma.

I'm falling apart.

LisaAlissa

Hi nightcrawler,

I'm so sorry to hear your news. No one wants to join the club here, but rest assured that we will help you every way we can (including helping you pick up the pieces if you've fallen apart).

Did they tell you any more? or at least tell you when then will?

Hang in there,

LisaAlissa

nightcrawler

I go see my PCP tomorrow morning to go over my pathology report.

Anonymous

I'm sorry that you have to join this club but just wanted to give you a few words of encouragement. I was diagnosed at 44. I also am the main bread winner. I opted for a bilateral mastectomy (for many reasons) and only missed 4 weeks of work. I did not have to have radiation because of the mastectomy (not guaranteed though) and I was lucky enough to have my oncotype score tell me I didn't need chemo. With a grade 1 tumor, you might fall into that category too. If I had worked from home I probably could have easily gone back at 3 weeks. Not saying everyone has that easy of a recovery but if you have no complications, it might not be as life interrupting as you think.

I also run...not marathons! but I do run. It's been over 6 years. I'm okay. I'm still running. Statistics say you have a great chance of being perfectly fine too.

This website/forum was a lifesaver for me. I'm the type that believes knowledge is power. The unknown is more scary to me. It helps to see others going through similar circumstances/feelings/thoughts. I don't come back very often anymore. I like to periodically check in to see new studies, information, etc. I also like to try to pay it forward once in awhile and let "newbies" know there can be light at the end of the tunnel.

runor

Yes you are falling apart. It is a mind numbing thing to hear. Like being sucker punched by a stranger. It leaves you reeling and staggering. Allow yourself the time to feel disconnected and disoriented. Trust the other posters here who say that you will slowly get your feet back under you. Nothing may ever be the same again, but you will still find a way to function and you will navigate your way through. Do not feel rushed. Do not feel pressured. If you need to tell a doctor that you want time to think about it, tell him. This is about you.

This site is a great resource but still be prepared for those bleak moments in the middle of the night when your mind can't go anywhere but to the bleakest, blackest places. We've all been there. Not that that's any comfort. Just know that you are perfectly normal and feeling like a deer caught in the headlights is perfectly normal. I am sorry that you got this news. It is brutal. You will find many people here though who have walked the walk and can talk the talk with you.

nightcrawler

I'd been meaning to come back to this thread and update it, but I kept forgetting. I was not BIRADS IV. When I finally got hold of my medical records, I discovered that I was classified as BIRADS V going into my biopsy. They KNEW this was cancer, and they stood there and lied right to my face, telling me not to worry because "this is probably nothing."

I went to a different hospital for my subsequent surgery because I didn't appreciate the way the first hospital treated me. Once I discovered that the first one not only treated me badly, but actually lied to me about my prognosis, I'm really, really glad I did not go back there. I wouldn't want to go back to them for a sprained ankle, let alone anything serious.

Denise-G

nightcrawler - thanks for coming back and posting. So glad you changed hospitals.

Sending all my best wishes to you...

Mybabygirls

Hi Ladies,

So today I found out that I have a architectural distortion of my R breast. I have been googling like crazy and my son told me to stay off of the internet. I have a Diagnostic Mammo and ultrasound scheduled for next Wednesday.

I am the type of person that thinks the worst but hopes for the best.

I joined the site today because everyone seems so supportive, and in case my news is not good, I wanted support and be supportive. I hope you all don't mind.

MTwoman

Welcom to BCO Mybabygirls! I am glad that you've found us while you are worried and waiting. We all know how awful that situation can be. In case it is helpful, here is a diagram of the diagnostic process:

Please notice that, generally speaking, your "goal" is NOT to advance to the next level. You are one of the 10% who have advanced to diagnostic workup, but as you can see, approximately 75% of those women are then either told to return to routine or short term follow up, as the risk of their finding being bc is so very low. (BIRADS 3). We try to encourage women to ask for a copy of their imaging report and post any confusion language here, for help in understanding. If you get above a BIRADS 3 (BIRADS 4 or 5) then you will most certainly be referred for a biopsy. Still (see above), approximately 80% of biopsies come back b9. So do prepare yourself, but try not to dwell on worst case scenarios. And do ask any questions you have, we are happy to help!

Mybabygirls

MTwoman - Thank you! This is very helpful information. I actually was able to get my test

done tomorrow instead of next Wednesday. So I will know more then.

Thank you again!!

MTwoman

Oh, that's great! Getting information sooner is always better than later. Keeping all crossed for you!