Wednesday 27 August 2014

Mammograms, wheelchairs and complex boobs.

My boobs have been problematic from the start. They didn't even want to make an appearance for a long time, thus leaving me open to many terms of endearment such as Surfboard, during my teenage years. Not to mention that the top of my sternum and adjacent ribs like to stick out rather than curve in and I was cursing my genetic shortfalls even back then. By Year 12 they had made a half-hearted appearance and thanks to the wonders of the miracle bra I could pretend that my singlet worthy breasts actually had cleavage. I should have known from their early behaviour that they were going to be recalcitrant for years to come.

They hurt. ALL. THE. DAMN. TIME. How two somethings so tiny, could be the source of so much pain, I will never know. But when the blast of the shower hit them or the dog accidentally whacked them it was beyond painful. Nothing soothed them. Not changing my diet or scoffing Evening Primrose oil. To this day they are tender little things. Add in the sharp electrical shocks that now inhabit them, and they are a tiny barrel of laughs.

Pregnancy brought mastitis, prior to giving giving birth. Who knew that was even possible? And I lost all the skin off my left breast and had months of biopsies and painful dressings until a plane trip to Melbourne finally diagnosed an obscure dermatological issue. (It would seem that my body has always been intent on being obscure in every possible way. Thanks genetic lottery. I am reduced to using floaties/water wings in the shallow end of the gene pool.)

My boobs have been continually problematic from their lacklustre late appearance, onwards.

Shortly before I turned 30 I discovered a lump.  A trip to the breast clinic at the local hospital went from it's probably nothing, to scans, to instant review, to on the spot biopsy. Luckily, apart from a bazillion grey hairs and a good cry in my car afterwards, I got the all clear a week later. But this marked the beginning of my complex, fertile boobs, upping the ante.

Since that time I've had two "we aren't sure" lumps cut out and many more biopsied. I have been told that my breasts are a garden and Swiss cheese. I have breast tissue growing where it should not grow and incredibly dense fibrocystic tissue throughout. They are more bag of demented marbles than breasts at this point, and this means I am left with a constant quandary. If I feel a new lump should I be worried?

Since that initial concerning lump of nothingness, I have been a regular scanner. My boobs have been felt up and seen by more people than I care to recall. I did have a break at one point. There is only so much cold KY and small talk in a darkened room, whilst a stranger tries to find your backbone through your miniscule boob, that a girl can take. But the last couple of years I sucked up my pride, had a good talking to from my doctor, stopped ignoring my defunct boobage and re-entered the world of scans, mostly due to more and more lumps arriving.

Last year a week after turning 40 I found a new and unusual lump. And so I had my first mammogram, plus bilateral ultrasound, apparently with my boobs of high complexity I have to have both. Luckily that was just a large unusually shaped fibroadenoma, but it reminded me that I can't always tell by feel what is and isn't a worry.

Today I had my first mammogram in my wheelchair.

Now getting your boobs squished is not the most fun in the world. It's uncomfortable. It's awkward. When someone is trying to simultaneously fluff up and squish/stretch out your miniature mammary to try and get something to scan, it can be offputting. This is where the staff can make or break the experience. As women we have to be aware of breast health. We can't avoid it. And our minds often make the idea of a mammogram seem far worse than it is. I know the first one I took my best friend along for moral support, but this time I was far more blaze about it all.

The reality is it is quick. And chatty friendly staff make it go smoothly. Today in my chair it was more awkward, well more so for the poor technician than me. But she made me feel comfortable and at ease. It was as simple as whipping back the arms of my chair, bringing the machine down to my level and having to stretch out awkwardly in what, minus the large medical scanning device clamping down on my breast, would have been a Vogue worthy model pose.

Of course I had to wait to see if I needed more than the basic four scans thanks to my complex boobs. Though I kind of like to think of them as more enigma than complex. Like some mysterious femme fatale in a French Film Noir production. Makes it a wee bit more bearable. Really it's hard to be worried when you're thinking of your breasts talking in a deep French accent. When you have scar tissue from past surgery and dense tissue it's never straight forward. but thankfully by the time I had also moved onto the, "there's another cyst, and another, and another, and that ones awkward, and there's that fibroadenoma you mentioned and...." ultrasound, I was free to leave no more squishing required. Winning!

Whilst I was waiting in the mammography room while the scans were checked, I was amazed at how little this mammogram phased me. It really is innocuous, especially in light of the myriad of other tests I've had done, or the surprise pelvic ultrasound I had earlier in the year (Dear Doctors, tell your patient when you've added that to the list of scans needed. It's not a test you should spring on anyone). I know a lot of women put off having a mammogram, for fear of pain in particular. But it is both quick and although uncomfortable, should not be painful. The staff do this all day everyday and you are treated with dignity and there is no embarrassment. And as I found out today they are happy to work around issues like wheelchairs, and teeny tiny boobs.

So now it's waiting to see my GP for the results. 

It is easy to get caught up in a world of Dysautonomia or other chronic illness, but we also have to take care of our more general health issues, just like any other women. And as my own experience demonstrates, being young doesn't mean you can't have breast issues. So check your breasts ladies and schedule in your mammograms and ultrasounds.

Interesting sidenote: I saw graph recently that showed fibrocystic breasts were over represented in Dysautonomia patients. As was endometriosis (which I also had) and PCOS. If I can find the link again I'll post it. 


I really wanted to put Diana Ross' Touch me in the Morning as my musical accompaniment, especially given I had a morning appointment, but really the trick with these things is just to keep breathing, plus I love Garbage.


  1. Michelle. I had all three of those things. When I went to Chris OCallaghan he actually changed his paperwork to include endimetriosis and PCOs after I told him my history. He said he had heard it too many times. Regards Maryanne

    1. It seems to be so many of us Maryanne. I'd heard it anecdotally from other patients over the years, but I read something recently where they'd actually started to document gynaecological issues properly. Must go back through my files!

  2. This one really struck home, not that your other blog posts haven't, but I come from a family where I have 5 sisters and 3 brothers. Two of my sisters have had breast cancer. One of them died a day before she turned 30. The other was just diagnosed in May. The sister who died was diagnosed with breast cancer just before she turned 29 which was my senior year in high school. I had my first baseline mammogram at age 17 shortly after my sister's diagnosis. I have often joked that when it comes to my family health history, that I am the mixed bag of all of the negatives from both sides. My dad's family are short French people whose hair doesn't grey until they're well into their 50s or so and breast and colon cancer both run on that side as well as diabetes. My mom's family are taller Scots whose hair prematurely greys so they are completely grey by age 30 and they tend toward diabetes and hypertension. I am 5' 1" (not) tall with diabetes and regularly colored hair to hide the greys I started seeing in high school. I tell people I don't view breast and colon cancers as a case of IF I will ever get them, but rather as a case of WHEN will I get them because God thought he should experiment to see what he could make out of the worst health traits in my gene pool. (Pass the water wings, please.) lol

    1. Oh Suzanne I'm so sorry. That is so much to contend with. Such a weight to have to deal with on a daily basis on top of everything else. I'll never understand why some seems to get hit with so many issues when others seem to get through life relatively unscathed. I don't know what to say but that I am thinking of you and sending love and hugs. xx

    2. Yay me! Hugs and love are always appreciated. I've had two breast biopsies as well, both negative, thank God. I'm due for another mammogram. I should probably call to get that scheduled. I don't know how they'll do it around the ICM in my left boob.

    3. Maybe give them a heads up about the ICM when you book? They were pretty good being delicate around my pacemaker, but that is up top of my boob. There must be some protocol for people with implantable devices.

  3. I actualy laughed at your comparsion of y our breasts to a French femme fatale.

    I agree with you on not getting caught up in the bubble of your chornic illness,a nd also taking care of your general health.

    1. Thanks bloggingastrid. Gotta laugh at this stuff :)

  4. Hi. I will try again to leave a coment here on Your blogg. Migth work This time. Reading This blogg makes me feel lots more normal, and less like a lonly freak. ,! My boobs, i love Them, i really do, Even after pregnancy, but i so wish They would be more painfree, but hey why would They act better Then the rest of me? I have had to pointless mamos , cos breast tisse is so dens They cant se a thing. And my breast are so lumpy and cyst come and goes so hard to know when to se a doc. I guess i will feel if its really somthing knew and very difrent from the rest of it...
    Hope u are having a better day to day, ... Hugs xx

    1. It worked! Thanks for persevering Nemi2 :) You are normal, lots of us with boobs like this, but glad my post could help you feel less like a lonely freak ;). Painful and dense are not a good combination there has to be a better way.

      I was reading about a 3D Mammography that may be more suitable for those of us with dense breast tissue. Not sure how it all exactly works but apparently it is much better at picking up things in folk like us. I've heard of it in big cities here but not so much out in the country where I am now. Big hugs to you too :)

  5. Interesting. I have PCOS, and fibrocystic breast tissue. And trying to remember how they termed my breasts, but I get a lot of lumps also. for sure they didn't call them a garden, though! Lol

    As someone who's grandmother lost both breasts and with a fertile family medical history of various female cancers, I can remember going in for that mammogram with that first lump. As a DD/DDD, there's a lot of mine to squash and it's pretty uncomfortable combined with tender fibromyalgic tissue everywhere. (Fibro is another thing over-represented in the Dys world.... Lucky genetic lottery, indeed.) I have those little painful lumps all over my body imbedded in the soft tissue, so I'm not sure why I was alarmed. But then, I'm usually alarmed still when I find a new one in my arm or leg or on my side above my spleen.... Lol I have sarcoidosis, so any lumps bother me, I guess. Sarcoidosis is fairly well represented in the Dys world also.... As in many of us sarcies also turn out to have Dys. :-/

    I wonder what the connection is between all this stuff.... .... Or is it simply that in the central nervous system failure that is Dys, is it simply that our hormones are also out of whack due to a lack of autonomic regulation?

    It always surprises/interests me what new things I find that I'm not alone in dealing with....

  6. Hmm, but replying from iPad still is a strugle:) my last coment ust froze. 3D Sounds great, but daupth They have it here. I am very glad to be a freak in company, Then on are not longer a freak, but normal, sort of;)

  7. When I was in my 30's my boobs were so bad the GP and 2 specialist sent me for a double mastectomy but taking all the tissue and just leaving the fat. No-one told me about necrosis or warned it could happen. long bad story. if I'd known then what would happen I would have kept the pain. I know its shit but the cure was worse.

    Caroline xxx

  8. Drat. This reminds me that I need to get in to see my lady doctor for my yearly pap smear and all that. It should be happening around this time sometime… I've been waiting for them to call me, figuring that "eh, it's not that urgent or whatevs"… but then I remember that, oh yeah, my body likes to pull nasty little tricks on me, and it would probably be better to be jumping the gun than scrambling to keep up. Thanks for the PSA, Michelle. You will have hordes of women marching to their ob-gyn's offices! ;)


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