Wednesday, February 3, 2016

What it's like when you go back for the recall mammogram

If you haven't read the precursor to this, go here and read that first.

The weekend before the follow up was okay.  We went to a new restaurant and went to an antique store that had an old photo booth in it.  I decided we should cram ourselves in there and take some pictures since that used to be our thing when we were dating.  When the pictures spit out five minutes later and I looked at this strip of smiling and goofy faces, I wondered if it would be the last normal picture of us.  If this is the strip we'd look back on and say "that was before we knew."

The night before the mammogram, the Mr and I played a hearty game of Boggle and finished up around 10:30pm and he insisted we get to bed early (for us) so we could get a good night's sleep.  I was having trouble getting to sleep since it was earlier than normal for me.  Around 12:30am, the phone rang.  Well unless you're in college, you know no good comes from middle of the night calls.  It was a friggin' robo call!!  The Mr was livid.  I just tried to keep calm and get some rest.  We put the phone on do not disturb and got 20-30 minutes here and there throughout the night.  It was not restful.  The alarm went off and I hopped in the shower, ate breakfast and we got on our way.  I spent the 30 minute drive singing some of my favorite songs like Uptown Funk because who can be scared or nervous belting that out?  Then we pulled into the parking lot about 10 minutes early and sat there listening to the radio.  The Mr asked how I felt and I said I wanted to barf.  I kept that feeling at bay for the long haul but now it was right in front of me.  When I walked out of that building I would either be relieved and life could resume as normal or my life would be forever changed and a new level of terror would set in.

Me being me, I baked and brought cookies.  What can I say, it calms me.  They pretty much took me straight back and I didn't properly get to say goodbye to the Mr.  They directed me to the 2nd waiting room where all of the ladies waiting to get their boobs smashed sit with their robes on and reading magazines to distract themselves.  I came out and there was one other woman in there.  It was probably about 10-15 minutes, I'm not sure because they don't have clocks back there.  What is this, a casino?

When the tech came out, she was obviously sick and shouldn't have been at work that day.  The last thing I needed was to catch her creeping crud.  I told her to squash that thing flat as a pancake, I could take it.  She obliged and the first scan went fine.  I glanced at the screen and saw my original 3D mammogram on the screen and could see the parts they were looking at...no tumors from what I could see but it looked like a few tiny dense areas or possible calcifications.  Then the new image of what she just scanned popped up beside it and it looked significantly less white to me and almost like the rest of the tissue.  I was relieved.  "They just needed to squish harder" I thought.  Then came the second scan and when it was over, the machine released but she didn't tell me to move.  She kept looking at it and I said "should I move or stay here?" and she said "stay there for a second."

"Great, she saw something.  What is she seeing?  Why isn't she clearing me to walk away?"  Thirty seconds passed which is 10 minutes in anxiety seconds and she finally gave me the okay to step away.  My confidence was shaken.  She led me to a two seat waiting area where I would be told if I needed to be re-scanned or if they were going to take me in for an ultrasound.  It was right next to a glass door and it was cold.  A few minutes later, a woman came out from the staff door with my box of cookies and asked if I made them.  I said yes and as she read the thank you note I attached, she asked me what made me do such a nice thing.  I told her I had nurses in the family and I knew it could be a thankless job and I just wanted them to know I appreciated all they do.  She was so tickled and gave me a big hug and said she was going to share with everyone.  I felt good and was glad I did it.

As time passed and I sat there surrounded by rag mags, muzak versions of "Your Song" and "I Believe I Can Fly" and mounting fear, I started fearing the worst.  Twenty five minutes passed and my shaken confidence was dipping to a new low.  How long does it take to look at a scan when the guy is right there?  I can't imagine recall patients being forced to wait a second longer than they have to but here I was and I was falling apart inside.

When another recall patient, who was clearly annoyed at having to be there given the way she was speaking to the technician, was seated beside me in the shoebox waiting area, immediately hopped on her phone.

"Tick tick...tick tick tick."  Bloop.

"Tick tick tick...tick tick tick tick...tick tick tick..."  Blooooooop.

Five minutes of this along with her phone ringing and replaying the pissy attitude I heard from her to people who were there to help her and I was ready to belt her out the window.  I wanted to say "YOU are the reason I had to bake cookies!  Women like you who come in here with your attitude like they enjoy calling you back and throwing a wrench into your day!"  I refrain.  Thankfully, it was about that time, a woman came around the corner and asked my name and I told her and she told me to come with her.  This was it.  The next thing to come out of her mouth was going to potentially change my life or allow me to exhale for the first time in 9 days.

"You won't need to be scanned again and no ultrasound is needed today.  The radiologist looked and your results are negative, there was nothing suspicious found."



Insert bursting into tears, slobber down the lips ugly cry of relief with profuse apologies for my reaction.  She smiled and hugged me tight and said it was okay and perfectly normal to feel that relief.  She said my breasts are going through all kinds of things from a hormonal standpoint and those changes are normal but it's always best to be safe when there is a change from the baseline mammogram. and I wouldn't need to come back for a year.

I got dressed and headed out to the waiting room where a nervous Mr stood to greet me and put my coat on for me.  I said goodbye to the receptionists who were thanking me for the cookies and we walked out and he said "so?"

I smiled and said "everything's good!"  He breathed a sigh of relief and I told him all about it when we got to the car.  I've never been so relieved in my life and I will make a note to the technician for every future mammogram that my right boob is apparently a troublemaker and will need an extra squish because I don't want to be going through that every year.

The Mr's take:

"That day’s good news is so relieving and so happy but I’d remiss if I didn’t mention that I still think about the other possible outcomes. I feel deeply sorry for anyone out there who didn’t get good news and I pray that they find happier times ahead as well. To Anele I just want to say that it, well, goes without saying that you truly are my world and I do not know what I’d be without you. We’re best friends and there’s just no words to convey how much you mean to me. So I’m thankful that you’re good to go on this one. But even more thankful that you do the right things now to get healthy and keep up on things like mammograms, etc. Keep that up!"

90% of recall mammograms are perfectly fine and not cancer.  But I am more than aware that someone has to the be 10% and to that 10%,  my hats off to the survivors and my heart goes out to the ones lost.  I was safe this time but may not always come out that way and treating your body with that respect by getting your yearly mammograms is so very important.  Remember if you have one bad experience with a mammography that is not how everyone does it.  Search for a women's health center that specializes in mammograms and keep going until you find a place that knows what they're doing.

For most, the mammograms don't even hurt, they're just a little uncomfortable because the technician is whippin' yer biscuits.  Yes, it is scary to think that they could find something but wouldn't it be better to find it early than to put it off and lose the battle because you were worried about 4 minutes of awkward?  I have a friend whose mom died of breast cancer, she watched her fight it and flat out refused to get mammograms because she was scared.  Well, she ended up with it 10 years later but it was through self exam and had been there a while.  She went through a lot and I wonder if her fight could've been easier if she'd just gone yearly.

If you are currently awaiting your first follow up and need some good information, these sites helped me during my waiting period:

If You’re Called Back After a Mammogram  (via Cancer.org)

The Dreaded Mammogram Call Back (via OncoLink)

Called Back After A Mammogram? Doctors Are Trying To Make It Less Scary  (via npr.org)


When was your last mammogram?  Have you ever had a call back mammogram?
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19 comments:

  1. I'm still so happy and relieved. This is the kind of scare that reminds us just how important it is to keep up with those regular checks. Not just mammograms but physicals, eye exams and everything else. I am so glad we continue to work on getting healthier every day too. I feel like exercise is going to be key in our lives to keep some of those problems of old age at bay.

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    1. Yes it is and I'm glad that we're getting physicals in April with the new DO. I know it's been far too long and there's no reason not to. Especially as we plant ourselves firmly into middle age when disease can sneak up.

      The reason we're having to switch is because our own doc of 15 years had a stroke and is unable to speak and had to close her practice. She's 49, thin, what I refer to as a "granola" and is a cautionary tale of "you never know."

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  2. I know that feeling of relief!
    Since I told you about my call back yesterday I will share another story with you. I am very adamant about wellbeing screenings. I get upset to the point of being argumentative with folks that don't get recommended screenings. Most insurances cover preventative tests 100%. I had this conversation with Hubby many times. We had friends over for a barbecue and got into a discussion about this. The wife was a nurse and told my husband that if a person is feeling well, there is no reason for annual doctor visits. He was quite smug and in that "I told you so" mode. I was quite livid. Every holiday or birthday my husband asked me what I wanted, & I would say please go to the doctor and get a physical just so I know you are okay. In March of this year, it will be his 5 year angelversary. He went from being what seemed a healthy, strong man, to stage 4 kidney cancer without a single symptom. He was gone 4 months from diagnosis.
    So now I tell people yep, I know a guy that didn't need Dr appts either, he's been gone 5 years. Who knows how a simple blood screen or physical may have change this tragic outcome. Please love yourself and your family enough to make that appointment. I could save your life.
    Ladies, as the smarter and stronger sex, make that appointment for your man and make sure he goes.

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    1. I am so sorry and I would've smacked the friend and told her that was a piss poor attitude for a health care worker to have. I hope her attitude has changed significantly since your heartbreaking loss.

      I will admit, we are not good about yearly physicals and there's no good reason for it. Our doc (49) had a stroke a few months ago and had to close her practice. I finally found a new doc (NOT an easy task when their website says they're accepting new patients and 6 phone calls say no they're not) that is a DO in lieu of an MD (treats the whole body/mind, not just throw a med at a problem.) So we're getting our physicals in April and I will put a reminder in my mail to make the appt yearly to honor your husband.

      Thank you for sharing something so personal so the rest of us get a harsh reminder that physicals are life saving!

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  3. Grrrr - hate hate hate when comments disappear. Remember to copy you idiot. Ok sorry, trying again.

    I've been in for follow-ups twice, both times after my dr found something suspicious in her manual exam. I haven't been called back after a mammogram, but I'm pretty sure it's about the same feeling. The first time I was in my 20s and my dr sent me directly for an ultrasound b/c I was so young. Then just last year I was sent for a diagnostic mammogram with a spot on their biopsy schedule afterwards "just in case". Two mammograms (big and small machine), an ultrasound and two hours later I was given the all clear. My poor mom in the waiting room was just about going nuts by then.

    My grandma died of breast cancer when I was a kid, and my aunt was a survivor. Given my family history they recommended genetic testing last year (I'll pass) and 3D imaging this year. I'll look into the 3D and see what my insurance says and how much it is out of pocket if they won't cover it. The letter I got from the imaging center says that a lot of women do both the standard and the 3D mammogram and do them 6 months apart. I'll have to do my research.

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    1. Oh and I just had this year's at the beginning of January and got the all clear.

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    2. So glad everything turned out okay in both instances. I think after two hours, they would've had to sedate me. I don't know if this is across the board or not but the paperwork I had to sign for my screening asked if I preferred the 3D and if so, it would be an extra $75 only if insurance didn't cover it. The 2nd mammogram the doctor ordered the 3D. I haven't seen a claim yet for the first one so I'm crossing my fingers they cover the 3D.

      I know what you mean about passing on the genetic testing. I feel the same about testing for Alzheimers. I think it could take the zest out of life. Knowing my grandma has it is enough for me to do whatever I have control over to keep it at bay.

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  4. You are so right--early detection is key. If they had done a biopsy two years earlier when my Du first started having prostate problems, they might have found the cancer and it could have been cured. By the time they finally did the biopsy, it was too late, Stage 4, spread to his bones, no cure, only treatment to delay the inevitable. His PSA was misleadingly low, very rare, but this does happen, and I still blame the Urologist for not being more pro-active. And there is definitely a before and after diagnosis feeling about all of it. We were so carefree before all this and didn't even realize it. We traveled to New York City on NBC's dime in late November 2012, as I got picked to be on the weight loss segment of the Today Show. We both remember that trip as perfect. Perhaps it was because it cost us so little, but more than likely it was because it was pre-diagnosis, which came less than three months later. We went to Washington, DC a month AFTRER diagnosis, visited his brother and took in the sights, but neither of us remember that trip nearly so fondly. Even today I think about where we would be today if we had NOT gotten this earth-shattering diagnosis, and I realize we would not appreciate the normality of life nearly enough. You never do....until it's too late. THIS was your wake-up call, and for a while now, you will appreciate your health and every single day will be more special, but you can't hold on to that feeling forever. It passes. I wish I would appreciate this time I have with my Du before he gets very ill, because I know someday I will regret not valuing this time more. So glad your results were great Anele--Enjoy your normal!

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    1. There is nothing more infuriating than a doctor not doing their job and a loved one or you have to pay the price for it. Ever since my FIL had a HORRIBLE doctor that we basically say killed him because he refused to run ONE simple blood test, we have told everyone who will listen to be their own advocate. If you feel like something isn't right and you want a second opinion, get it. Your generation and mine were taught that the docs know best...it has become glaringly apparent to me that they don't and I don't think the generations coming up have that same feeling of blind confidence in their doctor which is probably a good thing.

      I can't possibly imagine what it's like to have that cloud of stage 4 cancer over your life but you have got to try to enjoy every second you're blessed with him. It will always be looming but he is not his cancer. That is not what you love about him, that isn't what bonds you. Do those weekend getaways that he can handle. Hold hands, plant flowers in the spring, make memories and not to be morbid but don't assume he'll go first, sister...none of us are promised tomorrow. Big hugs and love to you both!!

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  5. I completely understand the feelings you went through. I was put in that same situation a few years back - and so was several of my friends - all at the same time.
    So, I'm wondering, do they just want MORE tests?? Did their standards change?? Why don't they do the more rigorous test the FIRST time??? The emotional stress is not worth it to SO MANY women.
    I agree with early detection whole-heartedly, but the test should be done right the first time and not put us through this. I have heard of this happening to too many people to not wonder about it.

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    1. Yes, I would much rather have the extra squash the first time than the feeling of dread and anxiety for 2 weeks. I'm definitely going to discuss the results with my gynie and ask her what the findings were because I want to understand the area they looked at. Since I've had issues with the right side both times, I'm going to tell the tech that my gynie said the right side needs to be compressed more. Some people don't take to having suggestions given unless a doc or nurse makes it. I don't mind the fib if it means I don't have to go through this again.

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    2. Here's deal. Of EVERYONE I've heard about this happening to, and there have been about a dozen, NONE of them had ANYTHING come of it. It caused a 2nd mammo, in some cases an ultrasound, and in my case a needle biopsy that was nothing more than fluid. With no results, I question the procedures. Do the higher compression - always. Better yet - do an ultrasound instead of pancake-ing our girls!!!

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    3. I know I'm preachin' to the choir !!!!

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    4. Everyone should ask for extra compression in my opinion. I won't not have them for the fear of being called back because the first time I skip it, could be something I'd kick myself for. A friend of mine has a woman in her 30's going through breast cancer who was diligent about her mammograms but delayed hers by 6 months and that's when it developed. Saw a news story this morning about a 21 year old girl with it (no family history) but it's in the same spot where she kept her cell phone in her bra. (People do this!?) Several other cases of young girls getting it where they keep it in their bra have come to the same doc so there's yet something else to tell the younger generation who doesn't consider the radiation those things put off. Just one more reason I don't use 'em!

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  6. So glad to hear your results were great! I had a mammogram recall this year, too. My husband and I can definitely identify with many of your expressed thoughts. I flinch a little remembering. Get your bits checked, ladies! It is so important!

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    1. Thanks! Glad it turned out well for you too! It is definitely flinch worthy and not something I want to relive any time soon.

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  7. I am sooooooooooo very happy for you that it all turned out well! That kind of agony is just the worst and there is nothing you can do to stop the mind from racing in every direction. This is excellent news and now you have a plan for next time with getting the extra compression done from the get-go. Oh, happy day!!! You probably felt like you aged a good ten years throughout all this. I'm glad you let the tears fall too-- all that pent up emotion needed to be released so you could truly let go. I'm proud of you sister!!!

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    1. Thanks girl! Yes, I will be telling them to squish squash until it pops if that's what needs to happen. I also don't want to undergo any extra radiation. I know the amount those machines emit is what we'd be exposed to in 7 weeks of just being out in the world but still. It was a pretty good ugly cry. I'm sure I scared the women in the waiting room crapless when I came out with my cry face.

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  8. Anele! I'm so happy to read this post!! I haven't been able to stop by your blog for a few days but was thinking about you. The way you described your reaction to your good news totally made me teary eyed, and I really liked the Mr's acknowledgement of those that don't get the good news. :) I hope this is a blessed year for you!

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