What Is My Psychological Damage?

Warning: controversial topic, I’m not taking much of a stand, just trying to work out my thoughts and feelings here, so be gentle in comments to me and to others.

“’Cause I’m just a girl, a little ‘ol me”

-“Just A Girl”, by No Doubt

“Oh I’ve had it up to here” Gwen Stefani sings in that old song. What I’ve had it up to here with is the use of “needless worry” and similar phrases as a reason to advise against screenings (annual or additional), or a reason to not inform women of breast density.

As I’ve said many times on this blog, I am not in the “a mammogram saved my life” camp—in fact that is one of the clichés of cancer driving me crazy lately. I hate the hyperbole of the phrase. I actually do understand to a degree when advocates point out that mammograms are not reducing the number of breast cancer deaths. But I have reservations about eliminating routine screening, and BIG reservations about not informing patients about density and potential problems, regardless of whether it can impact them or not. But whenever the needless worry reason is invoked, I stop reading/listening, and therefore am not absorbing the information advocates are trying to present, and I am not persuaded.

Don’t get me wrong—cancer is an emotional topic, like any illness or anything that severely alters life. And I have an emotional reaction to the emotional issue raised. I’ve started this post so many times in the past few months. I see yet another article about the uselessness of mammograms or over-diagnosis and start writing, but my emotions get in the way of making my points. I’m trying again, and hope I’m articulate. It seems this debate pops up every few months—whether it is this or that study, with whatever slight difference (I’ve written about that before).

I’m not suggesting worry and other emotions should not be brought into the discussion—my problem is the tone in which they are brought up, and the fact that the anxiety is used as a reason to discourage screenings or informing patients of density, right alongside data and stats showing mammograms don’t improve death by cancer rates or extra screenings won’t help those with density. I’m hearing: “tests are scary, so don’t worry your pretty little head”, and for me that cancels out the numbers and facts proving screenings are not as effective as we’ve been led to believe.

In many ways I’m the poster child for the ineffectiveness of mammograms and why routine screening should cease (or at least my cancer experience is on the poster). Propelled by my aunt’s diagnosis of Stage 3 cancer in August 2010 (and her experience was complex; including numerous tests the previous year, and a wait and see suggestion, but hers is not my story to tell), I asked for a mammogram at age 38, September 2010. I got an all clear, and 5 weeks later with an inverted nipple, I learned I had Stage 3, an oblong tumor approximately 5×6 cm going from nipple to almost the chest wall, with some spread to lymph nodes (that spread had not been made clear to me back then, I recently learned about it). I get very tired of the word “over” (as in over-diagnosed, treated, tested), and I think wow, I was UNDER-diagnosed. But really I was misdiagnosed. A false negative, I guess. So, in short, routine screening—not that great for me, and I have no call to defend it.

To be clear, it was not an issue of the technology not displaying the tumor. That old analogy of screening dense breasts being like trying find a snowball in a snowstorm also fails in my case. For me, no storm, only snowball. The tumor was dismissed as a density by the human looking at my images (my oncologists punt on this—they both say I have average age related dense breasts—not actual dense breasts), but I was not informed. I did not even know the radiologist wrote on a report not given to me that he saw a dense left breast until I confronted my oncologist in 2013, long after treatment ended. Did the radiologist hear all the rumbles about over-diagnosis, and all the needless worry, and decided it wasn’t worth having me worry my pretty little head about it—when clearly I had cause to worry? Was this debate raging in 2010? How the hell should I know? I didn’t read this stuff back then, I thought breast cancer was an older woman’s problem. And even then I figured I’d be one of the other 7, not 1 in 8 (yes I now know I was actually 1 in 233 or whatever other large number applies to the 30-39 crowd, I’ve seen a few conflicting things). In short, while I was trying to be proactive and dutiful, I did not really have any concerns. But I am sure some would consider me a victim of the awareness campaigns’ fear-mongering practices used to drive women to useless mammograms, simply because I went.

The eliminate screenings advocates would point out that not being informed made no difference to me. I developed symptoms, I sought medical attention, and nearly 5 years later, I’m still here, bitching about everything. I was saved 5 weeks of worry—gee whiz, aren’t I lucky (yes being sarcastic).

The recent Newsweek piece says, “Not every woman with dense breast tissue should be subjected to additional screening tests, which can be psychologically damaging and contribute to unnecessary health care costs…” and I just cringe. The latest to invoke the “needless worry and anxiety” cliché, it just sent me over the edge. I have a clear memory during the first few awful infusion weeks that included getting the Red Devil. A woman decided to tell me about that one time a worrisome mammogram forced her to go back for a biopsy, how awful those days of waiting were for her, until thankfully she learned she did not have cancer. Obviously, this did not sit well with me. All I could think about was how lucky she was, for her worry to be revealed as needless.

I hate that I think this way. I hate the disease comparison/competitions that are so prevalent lately. I catch myself thinking “I WISH I’d had a false positive” and sternly rebuke myself for sounding like that cancer patient in the UK Pancreatic Cancer PSA (“I wish I had breast cancer”) that inflamed so many breast cancer patients last year. (Want Attention? Just Say Breast Cancer.) But I am envious; I do wish I’d had a false positive instead of cancer because, well, I wish I’d never had cancer. I know I sound like I’m diminishing the fears of others, I sound not so compassionate–I’m working on this—I’m human, not perfect.

I think I have psychological damage, but the opposite kind of damage that all the hand-wringing is about. I worry because I didn’t worry back when I had reason to worry (am I making up for lost worry?). I do not trust tests, even when I have them and the results are showing no signs of cancer. I mean, I’ve heard that bad joke before, haven’t I? You’re fine—no, wait, no you’re not! Some say the government should not legislate the doctor-patient conversation. But having been a patient with the experience of finding out bits and pieces during and after treatment, well, I am left distrustful, doubtful, and faithless in most medical professionals’ abilities. That is just how it is for me. One big mistake was made about me, and I am unforgiving and taking it out on everyone else I guess. So when I read the hand-wringing about needless worry, all I can think is, “man, I got nothin’ but worry now, how about we trade, I’ll take some of that needless worry”.

This ramble is just to explain how I arrived at this point of view now, unsettled by use of emotion as an excuse to withhold information from women. I’m sure other bloggers can tackle the patriarchal medicine issues I think, and others might think, are going on here. A few months ago I caught a re-run of “Designing Women”, in which a character was encouraged to get a second opinion and biopsy. The first doctor was framed as a villain—accused of telling women to let him do the worrying for them. While I doubt we are on the path back to those dark ages (the 80s!), there is still a…I don’t know…”whiff” of “let the omnipotent medical professionals handle everything” when I hear an argument to withhold information—however useless—from a patient.

I also realize that far reaching public policy should not be influenced by the individual, stereotypical “personal cancer story”, just like my boring version I tell here. What happened to me was statistically rare (or so I understand and I do not think singular), so what is the use of telling every single woman under 40 about densities and risk. None, I guess, except to keep 1 in 233 women from experiencing the same sucker punch I did. The push for laws informing women of density was beginning while I was in treatment. I became dimly aware of it, having first ever heard the phrase dense breasts in the daze-filled first days of cancer, when I weakly asked how on earth my first mammogram was clear, what with all this cancer I suddenly had. All I got was the lame shrug and “young women have dense breasts” line, absent of further explanation. I still hold resentment—psychological damage, if you will—about that.

I want to jump on the “eliminate needless screenings” bandwagon, since I run away from the “mammograms/early detection saves lives” chants. But as long as that specter of “don’t let these emotional women worry so much” remains in the arguments, I will not be listening, much less agreeing.

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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.

27 thoughts on “What Is My Psychological Damage?”

  1. I would feel angry if my doctors did not tell me everything they saw. They do inform me, every year, that I have dense breasts. I guess it is a way to protect themselves too. If the mammo misses a spot, it isn’t their fault. It’s my breasts’ fault for being so dense. This is another reason why I demanded to get an MRI every year. I was told I don’t handle bad news well, to consider NOT doing it. But like you mentioned before, and I agree, the tests are not enough. The people reading them are just as important. I am sorry you had a bad experience with the detection of you cancer. You have every right to feel distrust.

    I do think that after been diagnosed with cancer, more often than not, doctors do pay more attention (at least this is what I’ve seen). I hope this helps you a little.

    I am not sure how I feel about the “been-overly-screened” propaganda.

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    1. Yes, I have to grimly chuckle to myself–with my lovely cancer history, they do pay more attention. Each time I go for the mammo, the tech makes small talk and asks if my first mammo found my tumor. When I tell them my false negative and 5 weeks later story they get quiet. Likely this is how I wound up in the MRI last year, given last year I switched to a new oncologist and hospital system–they were being careful. I mean, that was the first time I had not asked for an MRI since diagnosis, and I kind of wanted to skip it!
      Yeah, I’m still not sure what to think about it all. This post is just a tiny aspect of it.

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  2. I am wondering how you feel about all of these women having double mastectomies because cancer “runs” in their familes? It is driving me crazy. My great aunt had cancer waaaaaaaay back and had a breast removed. My mother had three different kinds of breast cancer yet tested negative for Braca test. HER sister had breast cancer. My sister had breast cancer and I had breast cancer DCiS. Thy were all estrogen positive. I, of course, have to be different and had estrogen negative comedo type which is aggressive. It was found very early 12 years ago because i ” had a feeling” had a biopsy, lumpectomy and 12 weeks of radiation I also tested Braca negative. My cancer was found because the radiologist saw something he’d never seen on prior imaging. Would I consider a total mastectomy because of it? No. Since Angelina Jolie had hers it seems all the rage now. I don’t see men cutting their dicks and balls off because of prostate cancer… However maybe if Brad Pitt had it done others would follow suit. I think my daughters aged 28 and 31 should have a baseline now but they disagree. Products of the “if i don’t feel it or see it it’s not there” generation. So my punishment for not having a total mastectomy was to come down with, of course, an aggressive form of thyroid cancer. Life changing. I will NEVER be the same. EVER. My only happy place is planting flowers and reading I don’t want to see people or talk to people. Breast cancer i got over. This, it’s been three years and just getting worse. More and more symptoms cong out based on what I believe was a botched surgery. For those who say this isn’t breast cancer blog. I say cancer is cancer. It sucks big time. And for those who have never had it…..count yourself lucky. That’s all I have to say

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    1. I have written about preventative mastectomy before on this blog. It is the choice of the patient, and no one else can possibly know all the tiny details that go into a decision. It does get a bit tricky with celebrities announcing their decision. Comparatively, Jolie has been much better in her explanation. It’s a fine line–are we entitled to know everything just because they are celebrities, and how does their self-proclamations of “speaking for other women” impact their disclosure? Very murky stuff, and I just don’t know. I’m not sure when all the articles written about unnecessary mastectomies started, before or after Jolie did hers, but I’m not sure the increase can be traced back to that–I suspect the upswing was already in progress. Certainly I did the BRCA test with the intent that if it were positive, I would get a double mastectomy–and that was in 2010, well before Jolie. I’m sure there is a certain segment that do things because famous people do, but plenty of other women I read did it because they did not want more cancer–a strong enough motivation, to be sure, no need for celebrity role models!
      I get why you think the thyroid cancer is a punishment, but it isn’t. It seems like Murphy’s Law I guess, and I always have to remind myself that is not a real thing. It is hard, but I hope you can realize the same.
      Ha ha, yeah I guess my blog is a breast cancer blog–tho’ I consider it just a cancer blog, and breast cancer is what I know best. I’ve been thinking about issues that are more about all cancers, not just breast cancer. It will sneak into future posts.
      Good to hear from you again!

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  3. I’m so glad you took this on. I, too, am very uncomfortable with this whole subject of pronouncing that women shouldn’t get screened, especially when it’s articulated by breast cancer advocates, including those who’ve had breast cancer themselves. Personally, I’d much rather go through some extra tests and the hell of waiting and be told that everything was negative than not to be tested and have something be missed. Early on in this whole sleighride, I just stopped trusting any clinician, even the ones I trusted for a long time. I get copies of every lab test, every report, every diagnostic, everything. I’m sick of having them misread and misrepresented. I wish to hell that there were much more reliable diagnositics and pathology analyses for breast cancer, instead of the same old ambiguity. I could rant on about this, so maybe I should write my own blog post about. I’m really glad you wrote this one. Thank you. Kathi

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    1. Thank YOU! I hope I did this topic some modicum of justice. I know I only hit the tip of the proverbial iceberg. Had a great twitter conversation with The Risky Body last night about the whole why is there not more discussion about learning which cancers would actually become a threat (as you know, the core issue is that mammograms are showing things that may or may not need treating, and that is why all the fuss). I’m sure there is much to be said on the stats and probability angle that I’m not equipped to tackle. And yeah, I wonder if part of my frustration is that no alternative is offered, since mammograms are so useless.
      And oh yes, have ever learned the lesson of getting EVERY little bit written and every image given to me–THAT was quite a struggle itself. I had to research and find out that I had a right to my images and record within 30 days of my request. My old cancer center strung me along–and delivered on day 31.

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  4. So much to say CC. You and I were both miss-diagnosed through mammography, that is, we had cancer and it was totally missed! On that basis I would still rather have regular screening in an attempt to spot it early, ideally when it’s millimetres not centimetres and confined to the breast instead of god knows where. The argument that mammograms don’t improve death from cancer rates is ridiculous because that isn’t what screening is designed to do. It’s designed to spot a problem early enough to make it treatable, ideally early enough to make it curable. For women in high risk groups the worry comes from being in a high risk group, not necessarily from being screened.

    Cynically I suspect much of this is actually driven by cost, not by what’s best for us all and if screening was totally removed I wonder how many among us would be getting diagnosed at stage four instead of stage 1 or 2? When I had my mastectomy not only was there a very aggressive tumour but also a fair chunk of DCIS and several areas of atypical hyperplasia. The consultant said all of it would have become cancerous in 3-5 years. If screening had found this prior to an actual cancer developing I’d have been ecstatic (even if that meant multiple biopsies and surgery as a pre-emptive strike) because cancer treatment is no walk in the park and I will never get that 12 months of my life back, or the other things lost as a result of my diagnosis and treatment.

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    1. I once asked my oncologist how long the cancer had been there by the time I got treated. He guessed at max under 2 years. He didn’t really like to talk about that–it does patients no good to try to figure out the exact moment cancer started. But I can’t help but wonder if chemo could’ve been avoided if only…but useless to think that way. I had DCIS too, that was all that was left to remove when I did get my lumpectomy. The chemo had successfully shrunk the tumor.
      I am a cynic too, and do wonder how much of the real issue is cost, and the “needless worry” is thrown in to make it seem softer, more patient-centric. But that sounds so paranoid! Oh well.
      Thanks for commenting–I was worried that this subject was just too much of a hot potato.

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  5. Ignorance is bliss. The rest of us are miserable with knowledge. Unfortunately too many of us have learned that mammograms are not always accurate. It’s one piece of possible information … or not. My mammograms don’t hesitate to mention my breasts are dense as is “typical of women who have had breast cancer.”

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    1. Hoo boy yes did I ever learn about how scar tissue looks so dense in images last year. Of course, it certainly feels denser as well–stiff, unyielding, and painful. At times I wonder why I even still bother getting mammograms. I’m aware of a 2011 report that mammograms are not really all the great for women who’ve already had breast cancer either.
      Funny I had no idea about the potential failure rate of mammograms back then, and even if I did know, I would’ve figured what are the odds I’d be in the small failure rate (although these days I do not think 20%, which is the figure I most often see, is “small”). One of the sucky lessons of cancer for me–not those uplifting “life lessons” everyone goes on about–but that is a whole ‘nother post!
      Thanks!

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  6. I am glad you addressed this issue. My grandmother died from breast cancer and I’ve been asking about screening since my mid 30’s. I was told my breasts were too dense for mammography to be effective. Last year, I developed a tiny indentation and insisted on diagnostic mammography. Using the new 3D technology, the radiologist identified 2 invasive tumors. MRI identified 3 more. Yes, I worried about false positive/negative mammogram results, but I’m glad they were able to catch it early and give me the best chance at survival. And, yes, I opted for bilateral surgery even though only one side had cancer, both for preventative and aesthetic reasons. I totally agree that it’s a highly personal decision and one that I believe every woman makes only after serious and thoughtful consideration.

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    1. Caroline I had DCIS 13 years ago, lumpectomy and 12 weeks radiation. Never bothered me and still doesn’t. When I was diagnosed with thyroid cancer I told everyone I was not going to be brave. It’s been three years and, yes, I am suffering PTSD badly. From doctors lying and withholding info to what I believe was unnecessary surgery my life is absolutely destroyed. All cancers and cancer survivors I believe feel the same way and have the same issues facing them. Just a different cancer in a different place. Kerry

      Sent from my iPhone

      >

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    2. Thanks–I was a bit afraid to address it. Mostly because I am so on the fence about so much. I only know I do not like the way it is often discussed. It sucks to be in the smaller statistics, sigh. Thanks for reading!

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  7. My first cancer diagnosis sucked many years of quality life out of me. It took me a very long time to get over it, maybe 15+ years – because I never tried to cope. I avoided it and let it make me miserable. At my second diagnosis I decided I would not let this happen again and took matters in to my own hands and found emotional support before my first surgery.

    So do not apologize for any of your emotions. Cancer gives us PTSD and learning to cope can take a very long time. I meant to write this yesterday and then when I saw today’s post, I decided to go back and leave a comment.

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    1. Thanks Caroline. I am usually ok and unapologetic for how I feel. I do think I’m whining a bit–“what about me and my worry–that was not needless?”. And I certainly do not like the disease who-has-it-worse competition. I will write about that in a post soon and I must hold myself accountable for doing it as well. Sigh, all so much to think about!! Thanks for coming back to comment!!

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  8. I haven’t been keeping up with the mammogram debate. I figure any test should be done but that we should be very aware that every test has it’s drawbacks, and every person who interprets those tests can be wrong. I’ve had two cancer mammograms, both backed up by ultrasound. The ultrasound was a much better diagnostic tool for both my large tumour in one breast, and the IBC in the other. I insist on knowing everything… I can’t understand the patronizing attitudes. Just can’t. Is it, in part, perpetuated by our own gender? The BC tumour on my C6 was missed in two or CT scans, medical errors they called it. I call it something else. I think I’m rambling. I’m glad you got this off your chest… keep writing it out, sweetie! xoxo

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    1. I should probably STOP keeping up with the mammo debate–ha ha!! Its so funny, the various folks in screenings will tell me that each screening looks at a different “view” and I do not doubt they are right! It is more complex than I will ever understand.
      Thanks as always for your encouragement–you keep me goin’! xoxox!

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  9. All the discussion here is helpful, useful, reassuring, and maddening all at the same time. The media still portray this disease as primarily uniform and mammography as the godsend. It failed me, and the surgeon confirmed that, even with mammograms, there’s no guarantee. He sees things pop up all the time between routine mammograms. So that’s when I let myself off the hook with regard to missing one mammogram the year before my diagnosis. It likely wouldn’t have mattered anyway, and I have distrusted the findings on mammograms ever since. So far, the insurance companies have covered the cost of adjuvant MRI. We’ll see what happens this year, now that I’m past the “survival curve.”

    As docs know, the findings on any images largely depend on how good the radiologist reading them is. I made a point of speaking with my radiologist and having him show me my images after each mammogram. When I expressed my dissatisfaction with mammography, he said, “Well, it’s the best we have, and even though it’s fraught with problems, I still recommend my wife and daughters get them.” Then all the news about dense breast tissue came out. I don’t think we need to scare people, but I’d sure have liked to know that I had a higher risk based on dense tissue. I might have been more vigilant, or moved more quickly once I noticed the change in my breast.

    The oncologist said my cancer (triple negative, more aggressive) was likely present for about 3-5 years (compared to the estimate of 5-8 for hormone positive). My stance is that mammography is not preventive, nor a means of early detection, if things don’t show up on it for YEARS.

    The PTSD effects for me still resonate almost 6 years out — I have many more anxious and fear reactions to things that once would not have bothered me and have to spend more energy managing them. I don’t spend nearly as much time wondering how I got cancer now, but every bit of new info that comes out gets me thinking again. Gee, those calcifications that kept showing up over the years. Should those have been taken as a warning sign? And that slight bleeding I had from the same breast years ago when I lived overseas — the bleeding the doc told me was likely related to a virus. Well now I see the research on the connection between viruses and breast cancer and wonder.

    I have gotten better at living with uncertainty, but only because that’s all there is.

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    1. You are too right–the many articles, the ongoing debate in the media is maddening. I wind up more confused, which is kind of how this post came about. I still struggle to deal with the uncertainty, some days I master it, others, not so much!
      Wow, your cancer experience is even more confusing in a way. While I understand the study now making the rounds that not all dense breasts are actually higher risk for cancer (of course it has to do with all the other factors), I still think there should be more discussion about it, between doctors and patients–not just a no mention at all. Like I said, I’d never heard the phrase until I got cancer (and now I can’t un-hear and sometimes, I want to). It left me wondering why I’d never heard of such a thing, and as is obvious, I still have lingering anger about not being informed. With all the nonsense out there, something that had an impact me was just never spoken of until I felt that impact.
      Sigh, I can never “move on” from cancer, all I can do is try to make this issue less irritation for myself, but, well, this post is kind of why I can’t. I will keep trying, tho’, and I least I got this off my chest!
      Thanks for stopping by!

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  10. Cancer Curmudgeon, fantastic post on a hot-button topic for me. It infuriates that so many medical professionals keep women in the dark under the guise of “avoid needless worry.” A mammogram missed my tumor, and the report said I had dense breasts, but never gave me any useful information. I was not informed properly, and it wasn’t until I did a breast self-exam that I discovered my tumor.

    I’m sorry you’ve had to endure so much. The media and articles about mammograms infuriate me.

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    1. Thank you very much. This is a topic that will continue to bother me every time it pops up, I think. It isn’t just medical professionals keeping women in the dark that makes me nuts–it is the respected breast cancer advocacy organizations that send this message as well that has upset me so much. And while some folks may think it a patriarchal issue (and it may be at the root), plenty of women are using the “needless anxiety” argument, and the Newsweek article I referred to here was written by a woman. I know that my situation was statistically uncommon, but I cannot help but feel a bit dismissed in this ongoing debate.
      Thanks for commenting.

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  11. I’m not entirely sure where to weigh in here, but I’ll try. I’m in my mid-60’s and have been having mammograms since I was 51. They all came back with the delightful phrase: “no evidence of disease”. Then, later, they would add “but you have dense breast tissue, which can make some things difficult to see” – or words to that effect. At no time did they suggest further testing, so I went on my merry way. There was one instance in 2009 when I did get a call-back and they did a diagnostic mammogram and a sonogram, but they determined there was nothing there. Kept on having those mammograms, though, and getting the same “but you have dense breast tissue” phrase attached. Then, one night when I was exercising with an exercise band, I noticed that I had an uncomfortable ache on the top of my right breast. Figured I’d pulled something, but it didn’t really go away. Soon after, two small bumps appeared near the surface and I knew something was very wrong. Mind you, this was less than 6 months after my last “clear” mammogram. I showed my doctor at my next physical and my head has not stopped swirling since then. She sent me to get another diagnostic mammogram and a sonogram. I’m not sure, but I suspect they told her something different than they did me, because I got the same old, same old in the mail, but she had me see a surgeon for a biopsy. (I knew and trusted him, because he had removed my thyroid a few years before – not cancer). He told me it looked to be at least 4 centimeters and gave me the option of a lumpectomy or a mastectomy. He didn’t push either one, but when I chose to have the mastectomy he said he thought I had made right choice. I don’t regret it, either. The tumor ended up being at least 9.2 centimeters and of the 43 lymph nodes he removed, 38 were positive! I went from “all clear” to Stage IV metastatic IDC in a flash! Trying to shrink it first and then doing a lumpectomy wouldn’t have worked. I asked how it was that the radiologist hadn’t seen something like this and was told he was one of the best around. I’m thinking “yeah and I bet he loves his kids and likes dogs, but where did this thing come from then?” I still find it difficult to believe that a monstrous thing like this just pops up one day and goes berserk to that extent in such a short time, however, having read of so many others who had the same experience, I’m not sure anymore. I guess it’s just “other” tumors which lie in wait for at least 2 – 5 years before they are felt. The other fun thing is, “tumor markers” don’t work for me so I have to have at least 3 scans a year to see what’s going on. Those things are expensive as blazes, too – even with insurance. Next PET-scan is on Nov. 3rd. The last one was good and I’m hoping this one will be, as well. I’m still on my company’s insurance and will remain there as long as they keep me. Don’t want to work, but I need to. I have to sign up for Medicare, because my 65th birthday is coming up in January, but I need to keep my commercial policy. You see, some of the places that offer help with co-pays only do so if you are on commercial insurance. I have no idea what happens when I’m thrown completely on Medicare.
    I was just diagnosed in May of 2014 and already it’s been something of a nightmare. I only really started talking about it openly this year. I have already let people know that they should not even think of “pinking” me. One more bit and I’m done.
    I saw a post where a man said something unflattering about the Komen foundation and a lady (no idea what her age group is) replied: “Yeah, research is important but I’m pretty certain prevention and early detection is also important. Early detection is the reason why there are so many breast cancer survivors.” I didn’t take that reply very well, I must admit. Nothing like hard facts. Makes you want to weep.
    I apologize for rambling so, it’s one of those days.

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    1. Oh Kate,I don’t know what to say–your case is certainly one of the worst examples of a missed diagnosis. I must say I’m not surprised the “he’s one of the best” comment about the radiologist. I got that too when I would press too hard about how was this missed.
      I don’t have the medical knowledge to really say much about some of your details. I can say both my oncologists haven’t put much stock in tumor markers, and I got the impression many doctors do not, at least in breast cancer. They view it as a factor, but not the whole picture so if the numbers fluctuate, they do not react. I’m not in the habit of giving advice, and have certainly been corrected on medical details here on my blog. Tho’ I do think if you doubt your doctor and cannot afford a second opinion, yes, you’ll have to educate and advocate yourself. Sad but true.
      Ugh, the intricacies of insurance systems–what a mess! I deal with insurance companies as a patient for myself and also as part of job doing some minor medical billing for a provider, and that is just as bad. One phone call, being bounced around, can kill an afternoon and you still may not have the answer!!
      Thank you for stopping by and sharing your experience, awful as it is. I honestly don’t know the answer in terms of getting the general population to understand all the Pink madness through the eyes of those of us who dissent. If I knew–well, the world would be different! xo

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