Thursday, June 4, 2015

Full Circle, Squished Breasts

Unbelievably, at my last oncology appointment, my doctor ordered a mammogram - for me.   He said, "I think we've been neglecting your routine care."

Routine care?   Me and routine care?

Does not compute.

In 2009, when I was diagnosed, I only had my diseased breast removed, keeping my other one as a souvenir. With metastatic breast cancer and the constant PETs and CTs, not to mention the years of chemo, a mammogram has been unnecessary.  But as I get further into remission, I'm off real chemo and only on antibodies,  the tests are ratcheting down and the stuff that normal people have to do are ratcheting up.  

The mix of emotions I felt when he ordered that test were complex:  I was disbelieving, confused, nervous, astonished, fearful, sickened and upset, and those were just the tip of the iceberg.  For somebody who has had as much treatment as I have had, as many scans and tests and biopsies and surgeries and chemos, you'd think a simple mammogram would be nothing. Having a breast squished? Hell, I was stabbed in the liver while awake.


What's a mammogram?

I didn't want to do it.  At all.

Being me, when faced with numerous emotions, I always fall back on good old reliable anger.

"What do you mean I need a mammogram?" I demanded of my highly trained and skilled doctor.  "I thought all this treatment we have been doing for six years meant I could bypass it?"

I'm really thinking, "I'm way past these baby tests and now into the big girl tests.  I'm a grown-up cancer patient, not a child."

I almost stamped my foot.

He stated the obvious, "You are at risk for a new primary - you could have a new triple negative cancer, for example, that the treatment you are on wouldn't help."

I stuttered, I stammered.  My chemo brain stopped dead in its tracks.   "But.....but.....a few months ago I had a PET."

"PET isn't very accurate, especially when finding smaller tumors."

He wrote up the order for a digital mammogram and sent me back to the treatment room.  I think my doctor is amazing, and I do credit him for giving me these extra, unexpected years.  But I was pretty mad at that moment, and went back to finish my treatment with outrage in my voice as I asked the nurses, "Do you know what my doctor said I had to do?"  I was as upset as if he said I'd had to tattoo his name on my chest to get my next treatment.

When I calmed down and started thinking about it, I realized my anger was based in fear.  Not of the test, which is simple. It was fear of starting the process all over.  I realize how strange that must sound, coming from a person who has Stage IV cancer.  I mean, it can't get any worse diagnostically, right?  What's another new little cancer? Mentally, the idea of finding another cancer in my remaining breast, going through the diagnostic procedures and perhaps doing another mastectomy - it was too much to bear.  Emotionally, agreeing to this test felt like I'd be losing all the ground I'd gained.

I'd rather not, thank you very much.

I took the lab slip, and promptly filed it.  In the round bin, if you get my drift.    Unfortunately, they are efficient, and they called me.   Wearily, I scheduled the test.

This week, I was back in that old, familiar waiting room, TV blaring House Hunters.  This time, I was not waiting for a PET or an MRI, but a mammogram.  We know what happened last time I had a mammogram, 350,000 words ago.

I felt a sense of deja vu when called back.   I was given a gown, the locker key, and told to take everything off and lock everything up.  As an old hand at these tests, I knew to bring a sweater, so I put on the gown, my sweater, took my phone out of my purse and locked it up.  I sat playing with the phone until my name was called, at which time I'd slip it in my back pocket.

A 3D digital mammogram is no different than a regular old 2D one.  They still take your breast and like a ball of play dough, squish it into flat disk while taking a picture.  

This difference comes in when you have an implant, which I now have.  This brought a new and unpleasant surprise.  In medical speak they must do an "implant displacement technique."  What it means is the tech takes your breast, uses her icicle fingers and squishes around your skin until she feels the implant, then pushes it up as far against your chest wall as she can. At the same time, she grasps the remaining breast tissue and pulls it forward like stretched silly putty and smashes it against the ice cold glass plate.

Smile for the camera.

My one and only breast throbbed for days afterwards.  But having only one, the test was, at least, pretty short and in a few minutes I was paying my parking (only $1.00!)  and headed home.

Because of  the fact that I violently did not want this test, I also was not anxious to receive the results. It simply didn't matter to me.  If it came down to it, I would not do another mastectomy, period. This is not because of vanity, which as a one-breasted woman, would be ridiculous.  It's because of the years of pain, frozen shoulders, discomfort, loss of motion, phantom itching and other problems I have been suffering with since my mastectomy in 2009.  I have never fully healed.  I am grateful daily that I chose not to do a double mastectomy.  I already have metastatic breast cancer, and lines must be drawn about how I want to live out the rest of my days.  I draw the line at amputating another body part that I know will lead me to years of discomfort and is unlikely to prolong my life.

But I did the test.  Now, my insurance company is happy, which I suspect is the driving reason for being forced to have it in the first place.

I had my infusion appointment yesterday, and they did give me the mastectomy results.  Fortunately, I won't have to make a decision or call myself a liar because the test is clean.

But remember how the PET scan isn't a good test because it doesn't see small cancers?  Here is what my path report says: The breast tissue is heterogeneously dense, which could obscure detection of small masses.

See the problem there?  Well, a mammogram costs $7000.00 less than a PET to see nothing so I guess its worth it.  That, my friends, is why I rarely got mammograms in the first place - they couldn't see anything.

The report also says,  The right breast is surgically absent.  (Surgically absent as opposed to what, calling in sick?)

There are a few benign-appearing scattered calcifications.  Bi-rads 2

I'll take it.

They'd just better not ask me to do a colonoscopy.


  1. Lol. I'm not a metster (so far), but have had two primary cancers, with both breasts, ovaries and uterus now "surgically absent." And tomorrow I have my third colonoscopy in 15 years. Would love to skip it, but my immediate family history is full of cancer (mom breast, dad prostate & skin, sister colon, brother testicular). So off I go! But I am with you in spirit. :-)

    1. No tempting fate! Leave out the "so far" in the future. You may never be a metster, and then think of how many extra, unnecessary words you will have typed! :). Sorry about your family. Smart woman to keep up with it. Smarter than me, but honestly, that's kind of a given. :).

  2. Reading your description of the waiting room, where you get asked to take off everything, use the locker, wear the robe, and wait for your name to be called, gave me chills. I am due to have my MRI late this month. I never look forward to having any of these tests - who does? I dislike the "waiting room" experience completely.

    Also, I try to forget about other kinds of breast cancers, like the triple negative, which I fear so much. I was told about this before getting my lumpectomy but didn't listen.

    My breasts are super dense and they can't see anything -- reason why I am getting my MRI's yearly. Ugh. Hate all of it.

    I can understand your frustrations about starting all over, in a way. I am glad your test results came back OK.

    P.S. You were awake during your liver biopsy. Did a liver MRI and hated it. I can't imagine a biopsy. Awake too.

    1. Aside from the liver biopsy, which was exactly like being stabbed, the MRI is my worst test. Not because I'm claustrophobic, but my back and neck can no longer take the position you have to be in for 20 minutes.

      I wish you well, with as little scanxiety as possible. Deep breaths....

  3. I was dense too, which meant no one could see the cancer. If not an MRI, how bout an ultrasound? They are EASY PEASY! However, since I opted for "The Girls Gotta Go" I will never need either, just bloodwork and scans. I'm so your mastectomy was so brutal cause I was going to suggest that too. It's not pretty, even with really good reconstruction but it's one less thing to deal with.
    Hang in there! Loved your post with the lady with note cards! She is friends with my friend Jamie and our boys are at Cancer Survivor Kids Camp as we speak!! :)

  4. Oh the phantom itching!!!! What is that? Sometimes it's unbearable. I ended up with a double. Separate surgeries. Both sides have the phantom itching.

  5. I had to have a mammogram on my reconstructed non-boob to look at scar tissue masses. I was pretty offended to see the machine after being certain I would never have to go there after a bilateral mastectomy. Oh well, it is what it is eh?

  6. "The cancer is not a tape, a test of detection, or an activity of leisure. It is not a shameless vest, a proclamation of the survival, or a gift worth giving. It is a disease ".-Gayle Sulik, MA PhD Una disease that still kills. A disease that almost so many people kill today like it did in 1975. This is not a progress. The early detection does not guard necessarily lives. The mamografĂ­as are not the prevention. It is not pretty. It is not inspiring. It is not of pink color.

  7. Great post. Love the honesty, the emotions, and the always present humor. I'm surprised, with dense breasts, that you just have a mammo. There have been plenty of studies showing that those with dense breasts should also have a MRI or an ultrasound. I think some states even made a law about it (I think CT was one of those states. I don't remember all the details).
    As a colorectal cancer survivor (in addition to breast cancer), I do have to put in a plug about colonoscopies. :) Colon and rectal cancers can be cured (unlike breast), if caught early. If a polyp is found and removed during the procedure, you will have completely avoided having cancer at all. But I completely understand why you don't want anymore tests! You just do whatever is best for YOU.

  8. Time to turn your pink daisy upright. and Smile!

  9. Funny how you get to the point you think nothing can phase you...and then WHAM. I've only had one mammogram; the first one (at 40) and I was diagnosed with BC (HER2++). The best description I ever heard post diagnosis was that "it was like drinking out of a firehose". Isn't that the truth! I think the worst test I had was the SNLB - nothing quite like having a big, fat silver syringe with radioactive who-knows-what plunged straight down into the middle of your ta-ta. Not to mention whatever that stuff was, it burned like fire. Somehow, methinks you've got me beat with the liver though (eek).
    I had straight tissue reconstruction. The recovery was pretty heinous, but since the tissue was taken from the bottom of my boo-tay I can honestly say that what was behind me is now in front of me (plus the best part was no more doggone mammos ;o) I am 9 years out next month, and so far so blessed. Your bent sense of humor does you credit - hang in there! I'll be praying for you.

  10. I like this blog. A lot of things in good conjunction, storyteller, fun, social and some of business stuff as well. This means one is in a good spirit, despite the words on the title.


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