Category: Uncategorized

That Every Six Months Thing

Well it is that time again; my every-6-months-appointment with the oncologist to monitor my post-cancer body is over, and I can breathe for another 6 months. I kind of hate this 5 year time line in which I need to see the oncologist this frequently; it’s not like I will magically be off the hook after 5 years, although I recognize the statistical probability that it is more likely to come back within 5 years than after. Yadda, yadda, yadda.

My fellow IRL post-breast cancer patients get mammograms every 6 months, just prior to their visits with their oncologists, from what I understand. I only do it once a year; at the other 6 month point I get an MRI. I had to fight a little bit to set this up. When my doctor was explaining my schedule and telling me I’d have mammograms every 6 months, I had to push on the brakes, and ask if some other form of imaging could be mixed in, due to the fact that my first ever mammogram was a false negative. Immediately, he went into the canned speech of a mammogram every 6 months being the protocol or standard of care or standard operating procedure or whatever they call it. I was like, yeah, I fell outside of the norm in diagnoses with that false negative (only 20% get that), and we need to think outside the box for my care.

Sigh. I know the medical world, and most worlds, are constructed to come up with a plan for the majority—majority rules! But there are just some instances in which the plans need to be tailor made for an individual. I think cancer falls into that category. My doctor is wonderful; I know he cannot keep track of all the details of each of his many patients. I just wish he would put a little sticky note on the outside of my file that summarizes the big points of my case, like the false negative point, so he could remember that. It was certainly a big sticking point for me—to think all is well after that milestone of “my first ever mammogram” only to find out a few weeks later that all is extremely far from well was a real kick in the ass.

The first post treatment mammogram I had last January was not too harrowing; I’d just finished the Herceptin infusions, I’d been seeing someone in the cancer center every three weeks, so I was not worried. I was not even real concerned when I had the MRI in July; it was clear, and I was pretty sure it would be. I’ve been told one gets a little “antsy” when emerging from that cocoon of constant cancer care. Since my cocoon lasted much longer because of the year-long Herceptin treatments, I experienced less of that, I think. But I do get uptight now when the 6 month time bomb approaches.

Naturally, this time round the mammogram had to hit some bumps in the road. I went to the same facility to have this year’s mammogram as the previous year, and the building is literally across the parking lot from the cancer treatment center, I’m talking a few yards. Yet, I was asked by the technician my entire cancer history. I say to her “You know, I’ve been here before, post treatment, even! This medical group/hospital system/whatever has all of my records. I did not bring my own cancer notebook full of dates and details because common sense would imply that this facility would have all of this info.” I was annoyed because she was making assumptions that there was a long lapse in time between first mammogram and diagnoses. Finally, I just recited my general timeline, and I emphasized that 1) it was about a month between the “all clear” and the “you have Stage 3 cancer” messages I received and that 2) it was this facility that gave me that horribly incorrect “all clear”.

But getting these facts out in the open was a good thing. The technician was a fellow false negative breast cancer patient herself, which put us on the same side, she was truly sympathetic to my story. This was a great improvement over the technician last year, who kept opening my robe (I prefer to open it myself, I do not want them to touch or remove my clothing, or in this case, cheap-ass institutional covering), then stopping to yammer about breast health rather than putting my breast in the machine, letting me just stand there uncovered.

Now, I don’t know if it was the fact that I was clearly not a fan of mammograms or if the Interpreting Radiologist (the unseen person, who sends the technician in again and again to re-take the image, I guess they are the great and powerful Oz?) was truly having a difficult time getting a clear image, but images of my left breast—yes, the one that had the surgery, the scar, the one that hurts—kept having to be re-done. It was excruciating. Finally, it was decided an ultrasound was needed.

While I understand and respect the need to have a better look by getting different types of images, it was still frightening. My experience of breast cancer world is, if more images are needed, there is a problem, no matter how many times the technicians assure the patient that taking more images does not indicate a problem.

So I wait a nerve-wracking week after imaging to discuss this all with my kindly oncologist. The night before my appointment, I open my results from the Interpreting Radiologist, telling me there is an “area” that is “believed to be benign”, but I should follow up with another test in 6 months. It is a form letter, it does not take into account that I am a damn cancer patient, I have to be tested in 6 months anyway, regardless of what she saw. I know these letters are just the way radiologists are covering their asses these days, so they can go back and say, “hey we informed the patient of the findings, it’s now all on them”. I get it, but it still sucks to get that letter.

But all’s well that ends well. The visit with the oncologist reveals that blood test showed my cancer marker to be decreasing since the last test, and the offending “area” is scar tissue and/or a mole. So in other words, my status is still NED, and that “area” will probably always be a problem. So it was much worry for nothing. But I am glad it was nothing. I will always rather have the stress of extra testing with an end result of “all clear”, than skip the extra test, get bad news later, and forever wonder if finding out earlier would’ve been better. I grimace every time I see someone comment on a blog about how stressful it was for them to get an “unnecessary” biopsy, that the medical staff are over-testing (which insurance companies think is happening, even when it is not), the “agony” they went through to get the negative results. I always write back: “you want stress, try going through the week of waiting to get the classic ‘you have cancer’ answer, then we can talk about stress.” I even kind of had to say those words to myself this time round, after getting that extra test for “no apparent reason”. Better safe than sorry—wow an old cliché that is very true!

Prince William, Osama Bin Laden, & Me

I’m not especially good at remembering dates anymore. Some of my cancer dates I remember, some I don’t. I have no idea when I began chemo other than sometime in November 2010, but I know my last chemo infusion was April 8, 2011, and that my last Herceptin infusion was Jan 13, 2012 (a Friday the 13th, whoooo). I was elated to be finished with radiation, but I will never remember the date of my last one, although I know it was an incredibly hot Friday, the final week of July, so hot that I did not mind walking dogs in the pouring rain late at night because I was so hot and sweaty I just wanted to take a shower. An outside rain shower was totally ok.

This means any Friday the 13th  is lucky for me, not unlucky.  And any incredibly hot day, I will link it with a cancer memory. Curse you climate change…all these damn hotter days!

The weirdest memory however, will be related to my lumpectomy: April 29, 2011, the day Prince William married Kate. I am not fond of the Royals, and the wedding was not of interest to me, but I was forced to watch it, getting up so early for surgery—it was the ONLY thing on. That day was one of the worst of my life, and the laugh I got out of Princess Beatrice’s hat did not alleviate it all.

That day, my surgery was scheduled for 10:30 am, and I had not eaten for over 24 hours, and of course I was required to be at the hospital at 7 am—classic cancer hurry up and wait. A couple of emergency surgeries pushed my time back to 3:30 pm (apparently my surgeon is the only one who could do it? I cannot fuss, she is good and if I had an emergency I’d want her). I am not the most pleasant person when hungry. Not that it mattered much, because the surgical nursing staff pretty much ignored me. There were two magazines to read, nothing to do but worry, and all the fluids given to me via IV to keep me hydrated made me need to pee, which is quite a job when prepped for surgery with a million tubes attached to limbs. If that were not enough, it was discovered the person who did my ultra-sound-guided biopsy for my initial diagnoses failed to put a “marker” near the tumor. Since chemo worked so well, there was no definable tumor left, making it doubly difficult for the surgeon to figure out exactly where to operate. So I was stuck getting repeated mammograms to make sure there really was no marker in there. What fun. And then of course came the six needles in the nipple to put the dye in my system. It was the single most painful thing yet—physically, mentally, and emotionally.

It is now odd how much I am forced to remember the days of and following my surgery. For example, Princess Kate’s recent pregnancy that got all of the internet and news outlets in a tizzy for several days this summer sent me down memory lane. My first reaction was, they have only been married a few months…and then I realized it was over a year…same amount of time since I’d had surgery. Time flies when you’re having cancer.

But the single strangest reminder came a few days ago, watching Zero Dark Thirty with my mom. The film puts important dates on the screen, including the day the SEALS killed Bin Laden, May 1, 2011. Mom turns to me and says “do you remember all this happening?” *Note: Let me explain my mother is not interested at all in history or current events, or even pop culture current dramas.

Well, yeah I remember the news of Bin Laden’s death! It was an important enough event that even though I was drugged, in pain, and annoyed at the stupid drains under my arm, I was very aware of what happened. In fact, I kept trying to watch the news in the days that followed, but I do not do well with anesthetic, so the crawl on the bottom of the TV screen made me sea sick. I feel like I got cheated of this American moment because I was too sick to see it on TV. When I say all this to my mom to put the event in context for her, she gets huffy and says she does not remember because she was supposedly taking care of me (I actually needed little help at that point, whatever, ha ha).

I honestly don’t know if this way of remembering is good or bad. On one hand, something like a triumphant moment in history is linked with a very bad memory for me. But with chemo brain stealing my ability to remember things, maybe having these shortcuts to my memory is a good thing. Who knows.

Some Updates

In the past few weeks I posted pieces on why I blog, and why I’m doing it now rather than when I was going through treatment. I guess the last part should be an explanation of why I am a self-proclaimed cancer curmudgeon. I’ve updated my “About” section to shine a light on my current philosophical stance toward (breast) cancer and the American medical industry (the curmudgeon part). And what follows below is an expansion on that

Above all, I’d like everyone to know that I am grateful for staying alive during cancer, for the drugs (made possible by research dollars from the pink ribbon behemoth) and health care team that keep me that way, and all the support I got and still get. But I do not think being grateful means that I, or anyone, should stop asking for improvements in cancer care and prevention. I demand of science more concrete cancer prevention methods than the “eat right, exercise, don’t drink or smoke” mantra that also helps prevent practically every damn human disease. I think it is ridiculous that the recommended action for a woman with an increased likelihood (like a gene mutation) of getting a gynecological cancer is removal of woman parts. I mean, if I had a gene mutation making me likely to get brain cancer, should I remove my brain? An absurd extreme, yes, but see my point? I realize that cancer is a complex, difficult to understand illness, but after thousands of years of knowledge of a malady we now call “cancer”, science should be further along in the understanding of it all.

*Note: Dude, I’m not even going to follow a thought about how often prostate or testicle removal is performed in comparison to female reproductive organ removal FOR PREVENTATIVE REASONS, because I know it will involve a lot of figures about which cancer occurs more often, and numbers about why science researches one over the other, women’s vs. men’s health issues, blah, blah, blah, so I went with brain cancer in my example—cancer has got to stop dividing men from women, we already feel the healthy-from-the-sick division too much.

I know things like gene testing and radical surgery are the only tools in the box the medical industry has to use against cancer right now, and the industry, as well as patients, want to be proactive….testing and surgery give the illusion of “doing something.” So I understand why the test is sold as something that can provide more info for people like myself, who like to gather as many facts as possible before making decisions. But transparency is in order…like if an oncologist recommends Tamoxifen for 10 years, up from the current recommended 5, to a patient, the patient has a right to know that the study that recommends this was funded by AstraZeneca, makers of Tamoxifen (full disclosure, since I was EP negative, I have no self interest in the Tamoxifen debate, just a personal one, as I researched it on behalf of my IRL cancer buddies, because I want to fight to make sure my friends get the best breast/ovarian/female cancer care available). Women who plan to take the BRCA test need to know how rare gene mutations are, and need to know that the mutations only increase risk of getting cancer, the mutations are not the cause (only if they combine with a bunch of other stuff, like environmental factors, which hurt and cause cancer in everyone, not just those with gene mutations).

All I’m saying, is how can I help add tools to the cancer-fighting toolbox? Other than donating money, because cancer has all my money now.

Thanks For The Inspiring Comments!

I’ve received a few inspiring comments on recent posts. In the event that other readers have not commented, don’t read comments, and have some similar thoughts, I thought I’d better put a quick post up about a couple of things.

I was sent a couple of links to stories about Ms. Rose, the Miss America contestant who is getting the bilateral mastectomy. I did not, and probably will not investigate her case too much. I simply heard her story and passing and let it inspire me to continue my reflections on the decisions I made in my personal experiences. Ms. Rose is not the first minor celebrity to do this (did we not just witness something similar with Sharon Osbourne—I’m fuzzy on her medical facts; I am more interested in the human nature aspect; as in her actions and the media reported reaction), and I doubt she is the last. However, for those paying more attention, the two measly articles I read implied Ms. Rose did not have the BRCA gene, which is impossible, everyone has the gene, the key is in the mutation. I urge everyone to get facts about this from reputable resources. It is possible the articles were engaging in a kind of verbal shorthand, much in the way that retail or movie theater employees ask us for donations to support breast or childhood cancer. Who the hell “supports cancer?” What they really mean is to support research or the fight against cancer, but we as a society get lazy and cut out a few words. Hey I worked in retail for about 20 years; I know how tiresome it gets to ask, for the millionth time in a day, for more money from a customer…while they give you money. It sucks. But now as a person with an up close and personal knowledge of cancer, it annoys me. I would never “support cancer”, and I think it is important to be clear and use proper language when talking about cancer.

Speaking of being clear—I am worried that some might think I am not grateful for how lucky I am in my cancer outcomes. Believe me or not, I am. I know it could’ve been worse, I have personal experience with friends of “worse”, but I do not feel the need to use their stories to quantify my gratitude, it is too private to me and to them. I hope readers can be ok with that.

I will have a little more about gratitude and how it relates to my views in future posts.

O Brother Where Art Thou?

O Brother Where Art Thou?

Thank you Coen bros. and Clooney for my cancer motto: “Damn we’re in a tight spot”

How to Swindle a Breast Cancer Patient Parts 2 & 2.5

Part 2:

My previous post wound up as a (self) education piece on whether or not anyone should bother getting BRCA testing, since positive results are so rare. I’ve been kicking myself for not doing the research prior to having the test. I trusted the people around me who urged me to have it done. But I cannot fault those who urged me to get the test too much; with the strong family history, it really is surprising that I am negative (unless it is a false negative). I was so relieved with my result, I wonder if the testing counselor was a bit baffled when we discussed the news; I think she expected a positive result as well.

This may just be my interpretation of how the BRCA testing is presented; it just seems with all the attention and discussion BRCA gets (at least in my cancer experience), all the percent numbers (how many women actually have the mutation, how many women with strong family histories have it) should be higher. And does the mutation cause the cancer—or is this more of a case of: no mutation=you might get breast cancer, and mutation=you will probably get breast cancer? I for one am still more interested in the cause and prevention, and while I am sure genetic research is important, how is it helping anyone outside of the few that have the mutation NOT get cancer? And why is breast/ovary removal the recommended prevention method for those with the mutation? Uh, something better please?

When I started the previous post, I explained I took the test so I could use the information as a factor in making my decision about prophylactic surgery. If the results were positive, would I have gone through with it? According to the testing counselor, a positive gives some women clarity to decide in favor of surgery. I think I was using the negative as an excuse to NOT have it.

What brought me back to this train of my thought about BRCA testing was the news about the Miss America or USA contestant, or whatever she is (I don’t follow beauty pageants), and her impending bilateral mastectomy, which she is choosing to do because she has this gene mutation.

I cannot and will not fault any woman for the decision to have this preventative surgery. In fact I wrote in defense of the decision in comments on a Huffington Post article that implied women were opting for too much surgery. What that article’s author did not consider is the sheer horror of having cancer; the author instead focused on the rates of surgery in relation to surviving cancer, not just having it. That is one of the discussion points of cancer that just makes me hopping mad. Of course we want to survive. But when will the number crunchers get it through their thick skulls that we’d like to not have any cancer in the first place, thank you very much.

Sometimes I do wish I’d had the bilateral mastectomy; perhaps it would cut down on the ever-present fear of more cancer. But ultimately for me, I think the horrors of cancer were all equal; the disease, the treatment, the side effects, and yes the surgery. I am not sure I’d want to experience one horror (removal of breasts) to alleviate the threat of the other horrors. For me right now my fear of cancer’s return is that it will make an appearance some other place—lung, stomach, brain—in addition to my breast, so removing them won’t really rid me of much of my fear. So, I cannot say with any certainty that if I’d had a positive result I would have gone through with surgery. And that is why, what with no children, no desire for surgery, and the knowledge that BRCA mutations are really not a cause of cancer, I just wish I had not bothered with the test.

Part 2.5

Thanks to ridingthebcrollercoaster’s comment to my previous post, I was reminded of a factoid I failed to mention before. While the BRCA gene mutation is rare in the general population, there is a higher incidence in women of Ashkenazi Jewish heritage. According to Five Lessons I Didn’t Learn from Breast Cancer (and One Big One I Did) by Shelley Lewis, “because scientists have isolated the part of the gene that needs to be tested on those women…their cost of being tested is much less.” So, if you are reading this and are a woman of Ashkenazi Jewish heritage considering having the test done, I urge you to mention this cost issue in your discussions before getting the test. I hope this helps!

How to Swindle a Breast Cancer Patient

Last September in my gynecologist’s office, a conversation went sort of like this:

Her: Did you do the BRCA testing?

Me: Yes, it was negative.

Her: Good.

Me: Why? I still got cancer!

Her: Yes, but it is good to have all the information.

It is true; I dutifully did the BRCA test as soon as I started treatment, at the urging of practically everyone I came into contact with in those first confusing weeks after diagnoses. With such strong family history (my aunt, my maternal grandmother, her sister, other assorted relatives, all had breast cancer), I was SURE I would get a positive result. I reasoned that with these positive results, the discussion could then proceed to having prophylactic bilateral mastectomy, as well as an oophorectomy, regardless of how my chemotherapy worked in the effort to shrink a tumor. (An explanation-my tumor was large and my breast small, chemo had been strongly suggested as the first piece of treatment, otherwise, surgery would have been difficult in terms of having to remove so much skin and tissue.) I wanted to get all my strategizing done; I wanted the results before I had to plan surgery, so I would know what I was facing, the most effective way of scheduling the surgeries, etc.

Incredibly the results were negative. I remember the testing coordinator saying that some women are relieved for a positive result, because then they “knew” and the “decision” was easier. With my negative, I could still do the bilateral mastectomy if I wanted, it just wasn’t as urgent, but you know, I could do it for prophylactic reasons. I did not think that way at all; I was glad it was negative, and I ultimately went with a lumpectomy, because I responded to chemo so well that my tumor was undefinable by the time I reached the surgery phase of my treatment plan.

I forgot about the BRCA testing, or shoved it to the back of my mind as I finished all the rest of treatment, and did not really think about it again until the conversation happened with my gynecologist. That conversation about the testing really bugged me. I do not have children and will not have them, so even if I had the mutation, I would not pass it on (I’m an only child), so why did I do it? Then last week, I read Five Lessons I Didn’t Learn from Breast Cancer (and One Big One I Did) by Shelley Lewis, who has graciously allowed me to include this reference to her book for this post. Ms. Lewis includes a section raising some questions about the true number of women, specifically breast cancer patients, actually impacted by this mutation. Her book inspired me to do a little research on my own.

At first all I found were the usual things, that a woman with one of the mutations is anywhere from 40% to 70% more likely to get breast and/or ovarian cancer, get it earlier, get a recurrence, and more likely to not survive. However, according to the Komen website, in the U.S., only one in 400 to 800 people in the general population actually carry a BRCA mutation, AND they state quite plainly that like all gene mutations, it is rare. Then, on the National Cancer Institute website, I found this little nugget: “Although such cancer susceptibility genes are very important, highly penetrant germline mutations are estimated to account for only 5% to 10% of breast cancers overall.”  Ooooookkkaaaayy, what about the other 90% of us? Well, the Cleveland Clinic states “(m)ost breast cancer is actually considered sporadic (occurring by chance). BRCA gene mutations are actually responsible for an extremely small number of breast cancer cases. So the chance to have a BRCA mutation is low, but when there is a mutation, the chance to develop certain cancers is high. Other causes of breast cancer include lifestyle and environment. Most breast cancer patients will never know the true cause of their disease,” (emphasis mine). Once again, the question of how the hell did I get cancer goes unanswered (not that I really expect one).

Along with these interesting tidbits, I learned from the National Cancer Institute that the mutation is responsible for disease in 45% of families with multiple instances of breast cancer, such as my family, so I guess we fall into that 55%? Furthermore, it is possible my test results were a “false negative”, and there is no way to determine if it could be a true negative, or if it is some other gene mutation not detectable. Argh, I already got one false negative in my breast cancer case, please don’t let this be another!

So, this gene mutation seems to take up quite a bit of space in conversations about breast cancer, yet it only accounts for 10% as a cause? I find this odd, since it seems that most of what I find about breast cancer tends to cater to the larger percentages in the disease—the estrogen positive, the over 60 years old, etc., all those categories I don’t fall into (see my earlier complaint about that). What is with the push to get all patients to do the test? Is it to encourage more surgery? Oh right, it is to line the pockets of the company that does the test. And I know there is enough ill will from some breast cancer bloggers toward Myriad about the fact that this company is the only one that can do the test; I’m not even going to dip my toe into that issue.

I regret that I even bothered getting the test. I would not discourage anyone from getting it, but I don’t encourage it either.

Why I Write (Right) Now

Most other breast cancer blogs I follow seem to seem to be written by bloggers currently in treatment, and once the blogger gets several months out from treatment, they move forward on to other endeavors, quit blogging, and I assume they have moved on from cancer.

I wish to clarify something; yes I am about a year out from treatment and am just now starting to blog about cancer. Because of this, it may seem I am not moving forward, and that may be so, but it is a little simpler than that.

The truth of it is, I just did not have time for it while going through treatment. I worked part time while going through chemo, approximately 4 to 5 months. About a week after my lumpectomy, I returned to work full-time, while still in treatment with radiation and infusions of Herceptin. And I worked for a non-profit arts organization, so full-time often exceeded the average 40-hour-per-work-week. I spent a lot of time interacting with the public, and writing on a computer. Plus, I did some pet care on the side for friends! So, on my downtime, I did not really do anything other than rest.

Realizing I was miserable in that job almost a year ago, I left it to turn the pet care lark into a real business, one that I could control, and take a little time to recover from all that my body endured in the previous year. It has been great, and I’ve finally had time to reflect on all the emotions I experienced while in treatment. Like many cancer patients, I did not feel the full extent of anger until after treatment, and I guess that is what is happening now, and I am getting it out of my system along with all the emotions I pushed down while I was trying to “do cancer right”.

Yes, I know I come off as negative quite a bit, but not all of the emotions or negativity is not “fresh”, and writing it all out is quite therapeutic. Will I ever get to a point in which I no longer need to blog? I hope so, and I hope not. As stated in a previous post, I hope my posts are helpful to those with similar feelings about cancer, and if so, I hope that I can continue to be helpful, whether as an advocate or blogger or whatever. I will move forward from cancer, but I vow to use the memory of the experience to help others as much as I can.

Claudia's avatarCancer: What to Do or Say.

Questions image credit: Google

After my oncologist told me I was an extremely healthy individual—with cancer, I asked, “How did I get this?” “How long have I had it?” He said, “We just don’t know. The best thing you can do is move on from here.” That was so helpful for me to hear. I knew it already, but to hear it from my oncologist gave me peace. There was no blame. Just the facts, ma’am (and with cancer, there’s lots of gray area.)

I frequently see the phrase, “Stupid cancer”on blogs, tweets and shirts. Cancer’s not stupid but some questions about it are. Some folks are sleep walking through life. They don’t set out to be rude or pry into your personal affairs, but—wow do some of them miss the mark! If someone asks you “How’d you get this?” or in metaphysical circles, “What did you do to create…

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