Screening and Screaming (i.e. frusteration)

Today was a heavier day, and not just because of this heat. Every six months, now moving forward to every year, it’s scan time. This morning I had a mammogram, and I was meant to also have an ultrasound.

Anyhow. We go to the hospital. They squish my breast till I’m standing at the machine (as the nurse move it ever so much tighter, and tighter, and tighter) making rude faces at the wall. But apart from the ridiculous compression of flesh, it goes smoothly.

It should be said that I’m not crazy for mammograms mainly because I’m only thrity (in about 2 weeks), and to receive this sort of scan every year, with all that radiation, really annoys me. I was hoping very much that ultrasounds would be an alternative to the mammogram.

Except after I get the mam done, the radiologist tells me he doesn’t want to do the ultrasound. He thoroughly believes that ultra sound screening produces too many false positives, and he’d have to do a biopsy, and I’d be left on ‘stand by’ (monitored) for six months at a time for years to come.

“But if you really want to do it, we can do it.”

Not. He didn’t really mean that. You should have seen his face when I said, “Well why don’t we just do it?” It was a ,”not a good idea” kinda face. And maybe he’s right?

I became an emotional puddle. (Darn tootin’ emotions! They make it impossible for me to express any words except for, “sorry,” which I shouldn’t even be in that situation.) Zsolt started asking questions about lymph nodes and such, and the doctor was answering his questions. So a mammogram, of course, is a reasonable way to screen . . . not perfect, but I suppose less false positives than an ultrasoun. Fine.

But I don’t want to be shot with radiation for forty some years in an area that I already know is sensitive to cancer. I just don’t want to do it – even this incidence was a twist of the arm following my oncologists request to get “at least one mammogram.”

Anyhow. The radiologist said that MRIs would really be the best option, if I have an overall lifetime risk of breast cancer that is greater than 25%. (i.e. we can’t justify spending the money otherwise.) Fuck. You know what the oncologist in England told me about my more immediate odds (as I made the decision to do chemotherapy), he said I had about 50% chance of not having reoccurrence if I had the treatment.  Of course, that number changes over time . . . but right now, I’m really pissed about the 25% lifetime crap when I had breast cancer in my body and lymph nodes only two damn years ago. And I know we all face this screening abyss, and I’m not entirely sure if I have a right to be so annoyed, but I am. So there.

Right. Bright side of things: I learned a lesson today. My options as a young woman aren’t fabulous in terms of breast cancer screening. I need to become more proactive in choosing my screening, even I need to pay for it myself.

Oh Geez – even brighter side! I didn’t get my results, but the radiologist looked at my mammogram and didn’t order any additional tests, which I take as an awesome sign. Next day or two I’ll call the doctor for the official reading of the correspondence between specialists (results). It’s not really stressing me out, because if he’d seen a lump, I’m sure the ultrasound (to a specific area) would have been done. I suppose it was just such a frustrating feeling, being told I didn’t have the power to choose my screening, that really left me in such a lurch today.

That being said, there has to be a better way. Mammograms for decade upon decade? There just has to be a better way.

(And I’m not going back to ask again for an ultrasound. I do believe that the mammogram is enough, but that’s not the point. The point is, I don’t think it’s the healthiest option for a woman at my age in terms of long-term health. Maybe I’m wrong, but going forward I’d really love to explore other options, whatever those may be.)

9 thoughts on “Screening and Screaming (i.e. frusteration)

  1. Catherine, I understand completely what you express here. We so wish other options existed that didn’t involve sporadic radiation to a specific area for so many years. I’m very glad they did not find a lump in your breast. But the fear, the anxiety, the scanxiety, is very real. I don’t get mammograms anymore because i don’t have any breasts to check, But just know that there are many young women in your boat. You are never alone. xx

  2. You should ask for the actual report. If the word “dense” appears anywhere on the scan, you should tell them no more mammograms, thank you, I’ll have MRI’s instead. Mammograms are not effective for those of us with dense breasts. And if you have dense breasts, your chance IS over 50%.

    So sorry you have to deal with this. sorry any of us do…

  3. My first reaction (after speachless) to “if you want it we can do it” – WOW. I don’t even know where to start with this so I’ll just jump right in.

    First of all, it might have been nice if the doc took 10-15 minutes to discuss with you all the different options, and pros and cons of each. We all know that mammograms are important, but they are much less sensitive in young women or women of any age with dense breast tissue. In fact, there is no perfect breast imaging test, and in women with dense breast tissue, any imaging test has the potential to miss a lesion. That’s why we often use mammogram, ultrasound and MRI.

    MRI, while not exposing you to radiation, has about a 10-20% false positive rate (which may result in additional possibly unnecessary biopsies) and requires intravenous contrast. However if it’s done using a quality breast coil and interpreted by an experienced breast radiologist, the “miss” rate for invasive cancer s very low. Lobular cancer (like with all imaging) is an exception – it’s a much sneakier cancer and harder to detect. DCIS and atypical hyperplasia are often not seen on MRI.

    Ultrasound is completely noninvasive and uses sound waves (again, no radiation). However, ultrasound is VERY operator-dependent The quality / resolution of the scanner matters, as well as the compulsiveness and experience of the sonographer. Having someone (like a technologist) perform an ultrasound and having the images read later (by the radiologist) is not acceptable – ultrasound is a “real time” scan, and subtle variations are often only appreciated when scanning “live”. Good radiologists and breast surgeons will scan themselves, with or without a technologist scanning first. Ultrasound is still not widely used as a whole breast screening test for these reasons – it is still used more to spot check an abnormality seen on mammogram or to evaluate something that you might feel. Automated whole-breast ultrasound, especially with a device that records the exam in a video format, is a huge advance, as the entire exam can be reviewed in detail. DCIS (since it usually does not form a mass) and calcifications are often not seen on ultrasound. However this is still not widely available and at least in the U.S., is not currently covered by insurance.

    NO imaging test is perfect for evaluating breast tissue and ALL have limitations in women who are young and/or have dense breast tissue. That’s why we often use all 3. And the advantage of imaging the breast using different modalities is that images can be compared to minimize unnecessary biopsies – what might look suspicious on one modality may be better evaluated with another, and then options can be discussed.

    Oh, and that 25% lifetime risk he talked about – those risk assessment models DO NOT APPLY to someone who has already had a breast cancer! You had it – you reached your 100% level. So an MRI (in my opinion) is perfectly justified, as well as an ultrasound. Doesn’t mean that we can always get insurance to cover the tests, though.

    As a breast surgeon who stresses education and understanding, I’m so sorry you had this experience. Thank you for sharing as hopefully others can learn.

    • Dr Attai,

      Thank you so much for all this information, going forward I’ll see what can be done – and it certainly helps to have this better understanding of the ultrasounds. In England (unlike Canada) they screened me with the doctor in the room using ultrasounds and it was never a problem. I suppose that presence made the process possible.
      Moving forward I’ll see what can be done. This was great info – thanks again!

  4. Pingback: Weekly Round-Up « Journeying Beyond Breast Cancer

  5. Hi Catherine. I’m off for my first (of many) post-treatment six monthly checkups, and my surgeon has booked me in for a mammogram and ultrasound – others had suggested MRI and I was feeling very confused about the merits of each. Thank you for this post, and thank YOU, Dr Attai, for you reply – they both gave me a lot to think about. Wishing you good health!!!

  6. I feel your pain Catherine. All of these tests are stressful and anxiety provoking. It sounds like you are doing everything you can to become educated so that you can choose the best option for you as a young woman. 25% seems high given you don’t have the BRCA gene. I hope that isn’t right! You’ve already been through enough without having that hang over your head. Hugs to you.

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