Get There Faster!

TV Re-Runs: Part II – “Friends”

A/N: This is the sequel to the previous post and was supposed to appear a couple days ago. But…I got a nasty head cold in between and am still a little out of it. So, that is why it seems late.

Tired of Pink pushers acting out the SNL “Mr. Short-Term Memory” sketch, I change the channel to another TV re-run: the ever popular, always-on show, mammography. What real TV show seems to always be on some channel? “Friends”! Not that there’s anything wrong with that. Yes, I’m referring to another popular syndicated sitcom. I’m happy both are often on, I like them very much. I cannot say the same for the constant mammogram debate always in re-runs.

I always have a difficult time when the mammography and over-diagnosis debate rears its ugly head. I was under-diagnosed. I received a false negative for my very first mammogram at age 38, which I requested because my 48 year old aunt had just been diagnosed. About five weeks later I was falling down the cancer rabbit hole with a 5×6.6 cm tumor. I’m left distrustful and bitter on the subject. I find it difficult to think about.

So when mammography gets discussed on a wide scale as it has been recently, I lose my temper quickly. The same old nuggets pop out: it is not a 100% accurate method of screening, it results in over-diagnosis and over-treatment, it makes no difference in mortality, blah, blah, blah. Then the articles written about a report pick it apart with paragraphs of numbers and what they mean, to show why the report is to be believed…or not. And so readers have to be wary and recognize that all that is written comes with biases, and as one article implied, some minds will never be changed.

source publicsq.tumblr
source publicsq.tumblr

My emotions make me just register white noise, so the science and evidence is difficult for me. It all sounds the same, and I think, wasn’t this just discussed? One recent article I started to read kind of had the same been there, heard that attitude, pointing out this controversy rises every few years. I was thinking it more frequent—like just last summer? But I think that controversy was removing the word carcinoma, reclassifying screening results—those things that may or may not turn into cancer. There is a real problem with over-diagnosis, I get that. I also get that last summer’s fuss was more about semantics and classification. But, mammography (and other screening methods, for other cancers as well) is still to blame in the matter, because that is how the may-or-may-not-be cancer results are discovered. So in my mind it is just part of the same old mammography story.

chandler

This is when I change the TV channel from SNL re-run to a re-run of the sitcom “Friends”. Remember loveable, cute, not-so-smart Joey Tribianni? He was always a few steps behind Chandler, Ross, Rachel, Monica, and Phoebe. Everyone else would “get” a joke or a point, and have to wait for poor old Joey to catch up. Late in the series’ run, there is a great episode in which Chandler and Joey are in the apartment belonging to Monica’s ex, Richard (sadly Tom Selleck is not in this episode). They find tapes, presumably sex tapes, labeled with female names. They find one labeled Monica. Chandler is instantly mortified, but Joey, well, he takes a bit longer to connect the dots. After waiting a beat, Chandler finally yells what viewers had thought for years: “get there faster!”

“Get there faster” is what I want to scream at researchers and reporters regarding this. Or maybe I wanna yell “get there faster” to everyone because I know the people involved in the endless studies done on effectiveness of mammography have nothing to do with other aspects of cancer—like why it happens, what to do about it, how to make not happen at all. As for those mammograms that find things that never turn into cancer? I guess the people crunching the numbers aren’t involved with solving that problem. I’m left thinking no one is even trying to find that solution. I’m sure it is being researched, it’s just the way that tidbit is mentioned as just one or two lines every time I hear this story, I’m starting to wonder why it isn’t THE story. I’ve read of a similar issue in testing for thyroid cancer. Seems to me determining if something is or is not cancer before treating is certainly a “get there faster” kind of problem.

I know how unfair I’m being with my frustration. I know demanding a solution RIGHT NOW is pointless.

Discoveries and breakthroughs don’t just happen on demand, or just because enough money is thrown at the process. I guess I’m just tired of this particular story grabbing headlines every few months or years…I really cannot tell how frequent it is anymore because I’m just so tired of it. Just like some TV re-runs.

I know other work is being done, in fact I recently saw interesting pieces about treating/preventing recurrence in the area of HER2+, very relevant to me. But that was certainly not broadcast in the mainstream media, as was the case with this mammogram study. Mammography always grabs headlines because it is the only thing the general, non-cancer public knows. Guess that is what happens when something is oversold.

And I know researchers work hard, and cannot think about the individual cancer patients, or potential patients, as they execute tests, analyze data, and all that.

But here’s the thing: I am one of those individual patients and as much as I try to see the big picture, some days I can’t. Some days I can only view everything through the lens of my own experience. So here is my view.

It’s true mammography did not work for this patient, diagnosed under the age of 40. It’s true I’m bitter about that. It’s true that this bitterness is a tiny part of my resentment toward the Pink message (but there are soooo many more things wrong with Pink, just dig around this blog). It is true I am NOT on the “a mammogram saved my life” bandwagon. Rather, I tend to snort each time I get a letter of “no cancer present” after my bi-annual scans: “yeah, heard THAT before.” So there is my bias.

But when the number crunchers start talking about how screening just finds disease earlier and does not change how long a person lives, the person is just sick for a longer portion of life, it is hard to hear. Even though it totally makes sense, it just seems such a hopeless statement to me. I don’t know why.

It is hard to hear these reports without a suggestion for a better method to replace mammograms. I know there are other screening methods debated in health media, but are they affordable and covered by insurance, available to even poor women, myself included? Regarding those options, if they are effective that is, I say get there faster.

While the two incidents have nothing to do with each other, it is difficult to put up with yet another onslaught of Pink rah-rah, this time in the form of the Kohl’s & Komen campaign, right after the latest repeat of another mammograms-aren’t-all-that story. Both just remind me that everything still seems to be in the same stagnate place as it has been for years. I had cancer, there is no news telling me of a reduced chance I’ll get it again. All will remain as it was before. I wonder if there even will be any changes in my lifetime. I don’t want to have cancer again. I don’t want to keep having the same Pink conversation over and over. Everything is just too slow. I want to change the channel from the cable networks that just show re-runs in syndication. I want the current season, but it does not exist.

All these years and it all sounds the same. GET THERE FASTER.

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

20 thoughts on “Get There Faster!”

  1. I had breast cancer, my sister had breast cancer, my mother and her sister had breast cancer and my great aunt had breast cancer with a mastectomy and the ‘powers that be’ tell me my daughters shouldn’t have a mammogram yet at the ages of 27 and 30 because it’s not healthy. I was diagnosed with early stage cancer because I had mammograms every year at the same place for 20 years and one year the radiologist noticed something that wasn’t there the years before. Caught it very early. So, my daughters should wait til they’re stage 4? I don’t get it.

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    1. Me neither. I obviously don’t trust mammograms for myself, but then what? Patience is not my best thing, so I know come off as unfair, saying get there faster. But sounds like you’re tired of waiting for better answers too.

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      1. Absolutely – mammos don’t catch everything, but a baseline is best so later on if and when “something” comes up either a mammo or a sonogram will have something to base a change on…..but then again, my 30 year old refuses to get a mammo, probably thinking it will destroy her perfect breasts – LOL!!! Years ago someone hacked our medical insurance and we were billed for a mammo for her when she was still in college. I called them up and said, ‘believe me, I would have KNOWN if SHE had a mammogram!!!’ HAHAHAHAHAHA!!!
        On more serious note…there was an article about a new kind of breast cancer around, that dealt more with the nipple…do you or anyone remember that? I am having issues, no discharge, just redness and itching for a long time and my gyno tells me it’s nothing, but I would like to research myself…
        Thanks.

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      2. Right. My first mammo was supposed to be the baseline I suppose, except I already had cancer at age 38, below the current 1st-timer recommended age of 40, which now is supposed to change to 50! I get statistically why they want this, only 1 in 233 30-39 year olds get cancer, but still….So I just disregard mammos as a whole I think. I get them, but I have no faith.
        Wow, someone hacked you insurance! Nuts!
        Hmmm, have not heard of a new kind at all. My cancer was totally in the nipple and grew back almost reaching the chest wall, pulling the nipple in (which is how I found out I had cancer). I hesitate to recommend BC resources, I usually just check other bloggers’sites, some of those ladies have lists of BC resources. http://nancyspoint.com/resources-2/ this page on Nancy’s Point might be a jumping off point, it has links to a few basic resources. I hope its nothing, good luck, and I have my fingers crossed for you!

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  2. Thanks for your perspectives on this. I get really tired of the same-old-same-old too. Why the heck can’t we develop better screening tools? Yes, we do need to “get there faster”! The waters are so muddied and so many women are confused by this continuing mammography debate. I think that’s what frustrates me the most – the confusion only gets more confusing. Thanks for tackling this subject. And thanks for mentioning my resource page. That was nice of you! I sometimes wonder if anyone ever looks at those…

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    1. Thank you, and of course, I often use your resource page, so naturally I send others there!
      I’ve been hesitant to write on mammography for the reasons I’ve written–I know I cannot be clear-headed about it. The issues I’ve mentioned of bitterness and distrust have grown rapidly in the past few months,since I’ve had time to process my whole cancer experience, so I’m learning to tackle them. I’m not there yet, but am working on it. It just makes it hard when the mammo articles end with, “consult your own doctors”, and I’m like, yeah, the ones that missed my cancer?! I’ve since left that medical organization, but still! Like I said, working on this…

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  3. Like you the HER2+ extremely aggressive £@#! In my right breast was not picked up on mammo… And I’ve been having them since I was 30 because all the other women in my family died of BC before age 50. No-one has given me a satisfactory explanation for this but the damned thing showed up fine and dandy on ultrasound. If I’d believed the ‘all clear’ letter I have no doubt (and neither does my oncologist) that I’d have been stage 4 by now. Women with a strong family history, even if there’s no BRCA evident, are at a greatly increased risk of BC. So much so that recent reports suggest preventative treatment eg prophylactic mastectomy or tamoxifen should be considered. I never trust my mammogram results now and because I am at increased risk of cancer in the remaining “good” breast (there’s research out there to prove it even if it isn’t officially mentioned) I’m going to take the prophylactic option – another cancer, more chemo and immunotherapy is not something I’d welcome back into my life. I don’t like being mutilated but I chose that over an early grave and I wish my mother, aunt, grandmother and great aunt had been given that choice.

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    1. Just our of curiosity, what do you think of the new 3D technology out there? I just had one done last year and I hope it shows up more information. Years ago when I thought I felt something, my then (last time I saw him) male gyno said to me if we did biopsies on all lumps that women complained about, women would be walking around with breasts like swiss cheese!!! Less than 2 years later I was diagnosed….and to make matters worse, he had wanted me to go on hormones at the time because of a hysterectomy – even tho I told him of the strong cancer history in my family. As it turned out, I was estrogen negative anyway and BRCA test I took and my mom, turned out negative.
      I also have thyroid cancer as some of you know – my oncologist told me I could wait because most thyroid cancer is the “good” kind, papillary, so I waited for about two weeks but began having strange dreams and decided to have it biopsied. At surgery they found a tumor wrapped around my vocal cords (which did NOT show up on petscan) which would have had my vocal cords destroyed in less than a month! Glad I listened to my dreams and not my oncologist. I always feel about cancer – get it out when you find it.

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      1. I think any advances beyond the primitive methods we use to identify cancer have to be beneficial, especially if they’re more reliable. The worry is this debate about false positives – we both know from our experiences that you can’t afford to take chances with cancer so until medicine develops some definitive way to know if its going to tear through us like a bush fire or make no difference to our lives at all I think we have to err on the side of caution. I’m hoping at some stage they might get better with protein markers and blood chemistry so that invasive procedures are kept to a minimum but in the meantime personal vigilance seems to be one of the best options for catching anything untoward before it can wreak havoc.

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      2. False positives, false negatives….take more bloodwork, ultrasounds (safer) and let them get their “sh_t” together. It’s a lose/lose situation when you don’t. 25 years ago I had Lymes disease so bad I couldn’t put my infant in her crib without dropping her because my wrists were so affected. I showed up negative to the tests, but the doctor let me go on antibiotics anyway, because I demanded it. It cured it. False negative…it happens everywhere, every disease all at the cost of the patient who has to determine, in their own mind and heart, whether to pursue further and listen to their minds/hearts, or not to pursue and listen to the doctors. I firmly believe we know internally when something is “not right” and we need to go with those feelings.

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    2. Hi TW
      Yes, I remember your HER2 status, and your history. I’m relieved, in a way, to hear that you cannot get a satisfactory explanation either–well, not because I want you to have a hard time, but because I’m not getting answers either. I thought switching doctors/hospital systems would help, but so far it has not. I’m still working on this–I don’t want it to happen again. The trust issue is getting larger and harder to deal with, for me, these days.
      The choices you speak of-no you don’t want mutilation but prefer it to death–is exactly why I’m so frustrated that cancer is not moving forward. It’s like, still with the mammo debate? Still with the same treatment (yes, slightly less terrible now)? And same in culture of cancer: still with the hero/warrior mess? Still with the not knowing what to say to patients? Still with the ignoring of Stage 4? It makes no sense. And your story, in particular is one that must be shared, that people should know.
      As always, so glad to hear from you, so glad to read your blog too, so glad to know you. –CC

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      1. Not moving forward – yes that just about sums it up I think. I know research takes ages and boy is it complicated but these common anomalies – like you and me – why aren’t they understood yet? It’s scary because I wonder how many more women there are like us, the ones who think they’re ok because the mammo says so. Speed is still of the essence if cancer is present and I can’t imagine waiting a year, or several years, for it to be big enough to see/feel/cause other symptoms. I don’t know why the Stage 4 folks are so under represented or why research dollars don’t go there as easily as elsewhere. None of it makes much sense and for those of us who’ve been through it, what are we really left with? Undeniable scars, no guarantees, more questions than answers and a mindful of doubts. When we stop to think about it it’s hardly encouraging. The only good thing I’ve found from all this is the connection with others all over the world. Maybe if we keep connecting, asking questions and sharing cancers ugly truths the answers will come… It really can’t happen soon enough. Meanwhile we all need a bit of curmudgeon about us xoxox

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  4. Hope you find this ironically amusing – I was false positive on testing throughout my forties. Got the works: mammograms in succession, ultrasounds every month, needle biopsies to identify the cells, lump excisions. Over-treated out the wazoo. Then, when the calcifications were cancerous in my late fifties, the radiologist missed it and called it benign. By the time it was identified as aggressive cancer I was late stage. So, here’s the thing. Someone human reads the screen and makes a judgment call. In my forties the humans were cautious and wrong, in my fifties they were blasé and wrong. And then a human read the screen correctly and the news sucked. When I compare where the clumps of cancerous micro-calcifications made themselves at home in my breast tissue, it was exactly where all the needles had gone into the noncancerous unidentified lumps the humans had been poking around at during my forties. Drum roll please. Was that a coincidence or was the over-treatment a contributing factor to the cancerous micro-calcifications? A little late now to ask the question – What if I hadn’t been over-treated for all the false positives …… ? Can’t know, can’t redo, can’t care, but it haunts me just a tad when the topic is discussed.

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