Wednesday, June 1, 2011

Not floating on de Nile.

My liver biopsy is scheduled for June 9th.  I plan to celebrate with a bottle of nice chianti and some fava beans.

The outpouring of love and well-wishes about my scary new condition has been overwhelming, and I appreciate it more than I can say.

Understandably, a lot of people seem to think that this upcoming biopsy might be happening to determine if it is cancer, rather than to figure out how to treat it.  People keep wishing me benign results.

I'm here to dash your dreams and lead you out of the land of denial.

While hearing a benign diagnosis would be wonderful - so wonderful I would jump up and down in excitement and quite possibly even film it for your entertainment, it really doesn't help me to hope for something that is very likely not to be true.

If it turns out to be benign, then fantastic.  I'm reprieved! Humiliating video forthcoming.

But, I can't get my hopes up for that because then they'll be dashed again - and there isn't a dash much harder than the one where you find out you have a fatal disease.

The truth is, my brain isn't capable of living in the land of denial.  There is no way I can ignore logic, probability and what is in front of my eyes for fantasy.

There are reasons why I don't expect this to be anything but a metastatic event, and I'll share them with you.

1.  I'm symptomatic.  I sleep a lot (as I did when I had active cancer the last time).  I have pain in the lower back and side,  but I have sharp twinges in the upper right now. I'm bloated like a pregnant woman,  and sometimes nauseated - also, I guess,  like a pregnant woman, you poor thing.  I can still eat but feel full all the time, not like I've eaten too much but like there is pressure in my stomach.    My night sweats have increased and I'm just dripping, sopping, disgustingly wet all night.

2. To give me hope,  many people point out that they also had a CT that showed lesions on the liver that turned out benign.  But, these people forget that that was their first CT ever.  Some also forget they never had cancer.  We all have funny stuff going on inside our bodies and things growing where they shouldn't, especially when we get older.

It's when new stuff happens in a cancer patient that it's concerning.

I stopped herceptin December 2nd.  I had an abdominal CT December 10th, which showed nothing on the liver.  I had another abdominal CT May 16, which showed these two large lesions.

That tells us something.

The most common benign liver lesions are cysts and hemangiomas.  Typically, liver cysts don't grow or change appreciably over time and they don't cause symptoms.  Most hemangiomas also don't have a quick growth pattern - although some can.  When they suspect a hemangioma, they usually don't do a biopsy because of the bleeding risk.   Both of these lesion types are also usually diagnosable on CT, especially when they are larger.

You know I can't stay away from Dr. Google, and I found this on a radiology website,

"When multiple new hepatic lesions are encountered on a CT in a patient with a known malignancy, a presumptive diagnosis of liver metastases can be made."

That sounds pretty definitive, doesn't it?

They aren't done yet though.

"multiple new lesions, some of which are larger than 2 cm in diameter are diagnostic of
metastatic disease with a high confidence level.

Still don't believe me?

"In a patient with a malignancy that is known to metastasize to the liver, the interval development of multiple variable size low density hepatic lesions is diagnostic of metastatic disease"

Remember what my path report said?

Interval development of two ill-defined (hypodense) hepatic lesions measuring 2.4 and 2.0 cm concerning for metastatic foci.

Believe me now?

So, why are they doing a biopsy?

"Definitive diagnosis of a liver lesion is required only when treatment will be modified if a diagnosis is made."

My treatment at this point is only tamoxifen, which I guess might not be working as planned, so we definitely have to modify it.  Breast cancers have been known to change histology as they metastasize, and so maybe we need to make sure it's HER2+ still, ER+ etc., to determine the course of treatment.

3. My doctor's words were not encouraging.  No, "It's probably nothing but let's be certain." Or, "It is mostly likely a cyst but we have to check."  He said, "Given your history, we have to assume that it's cancer."   No, he didn't come right out and say it was definitively cancer, which some people are waiting for.  And, maybe that is what I should hang my hopes on, and maybe that is what you would hang your hopes on.  (Lots of hanging hopes around here!)

But, I can't.  I am hanging my hat (hah!  fooled you!)  on his saying that if that was all there was - those two lesions -  I was still "salvageable."  That seems more realistic.  He said, "Lets do a biopsy and then I'll set you up with a PET."  The PET is to see where else it might be.  He also told me that having only two lesions was good, that if my liver would have been covered with them than the prognosis would be much worse.  He also wanted to rush the biopsy through.  (In their world rush is two weeks).

He was talking to me as if I already had metastatic cancer.

I try not to read too much into body language and expressions of doctors and medical personnel.  We women like to do that - we try to read the faces of our scanning technicians, we hang on every twitch of a finger and examine it for meaning, which is probably pretty foolish when you are dealing with an oncologist who has seen it all.  But I got the definite feeling that he thought I had cancer again.

It was just a feeling - meaningless.  But, because of all the things I mentioned above: my symptoms, the odds,  my physician's phrasing,  I am going to have to assume that I have metastatic cancer.  This biopsy, I believe, is not diagnostic.  It is to determine the cancer's histology.

What you do and believe is up to you.

Of course, I am not a doctor and have absolutely no idea about what else could be happening with my liver - I am quite sure there are many of things that I have no clue about. I'm sure Dr. House could come up with dozens of alternative diagnoses, including, of course, sarcoidosis.   Maybe there is some other very fast growing tumor that grows on the livers of HER2+ breast cancer patients.

But, I doubt it.

Of course, none of that means I have given up hope. Facing the probable truth doesn't mean you are giving up.  It just means my hopes are placed appropriately - that it's found early enough to be treatable, that the treatment I get puts me back in remission, that my remission lasts a good long time, and that this TDM1 trial that everybody is talking about really is the miracle cure for HER2+ women, so when it inevitably does return, I'll have that in my arsenal, and maybe even something better down the line.

I know you want to see me jump up and down.  Maybe you will.

But, I'm not buying any sneakers.


Don't forget to enter the contest for Aqua Delight.  You only have until June 4th so don't delay.  Tell your friends too - especially those doing chemo -  healthy, pure water is good for everybody.


  1. Ok... well, I'm still hangin' my hat on the hopeful hook (that would be the 'not cancer' hook)... so there.

  2. Ann, take a leap of faith and buy some green bananas! Thinking good thoughts

  3. (((Ann))))
    Totally understand where you're coming from. I know you're not being negative... A realistic attitude is healthy! Just so long as you try to stay away from the road downhill.

    I'm not patient with waiting, though. TWO WEEKS is NOT a rush biopsy.. for cripessakes!!

    I put myself in your sneakers and know I would probably feel the way you do.

    Like so many of your bloggy friends, I find myself to have so much in common with you. We’re about the same age.. I'm an elementary school office manager... I am super witty :).... and then there’s that little thing about being breast cancer adventurers.

    My heart is with you.. hoping for the best that can be.


  4. Ah, Ann.

    I hate this for you. It totally sucks.

    But I have infinite respect for your attitude, your forthrightness, and your honesty.

    May your disease continue to respond to treatment as it did before - hope your husband isn't jealous, because that boy NED should be spending a lot of time with you.

    Sue _ ICanDoThis.

  5. I was told to expect cancer after my mammo. Friends wanted me to hope that it was not...but I knew from the look on the face of the doctor that it was.

    I had to wait through a holiday weekend, squeezed in a trip I could never take now, knowing I probably had cancer.

    I now think of those difficult days as important. My brain could try out the cancer diagnosis before it was confirmed.

    So while I would love for a happy surprise, I totally get while you can not live in denial.

  6. Since I have been on the other end of this (caregiver) I have some hints (advice?) for Ann's family, friends and neighbors:

    DON'T call and say "if there is anything I can do let me know."
    Make a casserole and take it by.
    OR Show up and say I'm here to scrub toilets and the kitchen floor.
    OR Put clean sheets on all the beds, and run a load of dirty items.
    OR Take Ann her favorite beverage.
    OR Bake a cake and drop it off.
    In other words JUST DO IT.
    All my best to you Ann.

  7. Hi Ann

    I would like to be the first blog reader to offer to film the video of you at your doctor's office as you hear the words "holy crap.....its benign".....or ...... "oops....i mixed your ultrasound results up with mrs. jones and you are perfectly fine"....

    But if the story does unfold as you suggest, i hope you know how many of us are behind you.....rooting you on....and wishing you many many years with NED.


  8. I admire your straightforward stance so much; you provide a wonderful example of meeting the monster face-first, planting your feet, opening your mouth, and telling it to "f-k off". You are an awesome individual. I did want to throw out there (although surell, SURELY you already have and/or have read it) that Kris Carr's "Crazy Sexy Cancer" is a great read for those dealing with advanced and/or more complicated cancers. Mine isn't there, but I still find it very helpful and uplifting.

  9. Ann, I really appreciate your honesty and willingness to tell it like it is, or as you say, how it most likely is. The truth is so important isn't it? Sometimes reality really stinks. Whatever ends up happening, you are NOT a lemon! And I'm sorry you have those miserable symptoms and have to wait a while longer. My best.

  10. Ann-I'm still hoping to see that video of you jumping up and down, but I certainly understand the need to be realistic!
    I was very sorry to hear this bad news. You are an intelligent, funny, brave woman, and I really enjoy your blog! I have been trying to post on your previous blog entries, but for some reason i seem to be having trouble with my gmail account! Hope this one works...I'm going to try it anonymous instead of my Google acount..
    Tina (

  11. Oh Ann, this is such a tough one. Dr. Google can give us wonderful insights that we would not necessarily get from a doctor. I liked how you described reading the verbal gestures of these medical whizes as they conveyed news to you. We women all read things into these expressions that may or may not be true.

    Hang in there!
    My very best to you.

  12. Bravo! Love your courage to see things right into the eyes.
    take care @ love,


  13. Your honesty is so refreshing. I like this post, and I like you... enjoy your wine and as much relaxing as you can get this weekend.

  14. I learn more about coping and living from your blog and the blogs of others living with cancer than from any "book". I'm lucky to have such a network. Keep up your spirit and your writing. It is gift to all of us. Prayers for you that the unlikely will be true on the 9th.............

  15. "Facing the probable truth doesn't mean you are giving up." Brilliant words, variables of which I have expressed to my doctor and to others. Acceptance is an emotionally healthy thing. The opposite side of the room from denial. You write so well, thank you for sharing. I know that the waiting SUCKS! I'm sorry you have to WAIT for the 9th. Didn't someone sing a song in a past decade about waiting behind the hardest part? So true. Even if you were 100% of 100% of the outcome, the waiting would SUCK! Of this I know.

    I understand what you meant in this article. It's hard to know what to say to someone in this situation. So I'll say...may the wait seem short, may the techs be NICE, may the scan slab be comfortable and may the results come back quickly!

    Shelli G.
    The Dirty Pink Underbelly

  16. I get it completely Ann. I live in a place that someone once termed "hopeful reality" which is a long way from denial. Living with metastatic disease is a constant mind game, and it's certainly not helpful when people want to hang off every minuscule detail of your diagnosis in an attempt to comfort themselves. The way my hubby and I get through the stress of the tests that just never seem to stop, and the conversations with family and friends, is that we deal with facts and facts alone. Not speculation. Hang tough sister, know that the community is here for you.

  17. Thinking of you, and hoping for the best possible outcome.


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