Monday, June 28, 2010

Recurrence Risk

You know, every time I think/post "I don't have much to say that's cancer-related right now," I really DO. (And from talking with other cancer survivors, I know this is normal/common.)

Two nights ago, I was up till the wee hours of the morning, deconstructing my pathology report, MRI report, and mammography reports, Googling every word I did not understand. I wanted a clearer picture of what my recurrence risk is. I’m mainly skeptical of the Tamoxifen because I don’t believe my risk of recurrence is high enough to warrant it. I feel so sure that I won’t get cancer again no matter WHAT, so why deal with the risks of Tamoxifen?

I guess two nights ago I was taking the opposite approach – trying to find information that would convince me my recurrence risk IS high enough to make the Tamoxifen worth it. Why am I so sure I can’t possibly have a recurrence? I was “so sure” I couldn’t possibly have cancer in the first place.

So here are all the facts as I know them.

I had two types of breast cancer at once:

A mucinous tumor, Stage 1, Grade 2 – 1.5 cm at its greatest diameter. Mucinous is a "good" kind of cancer to have if you have to have cancer, because it's so slow-growing/non-agressive. But it's really strange that I had it at age 30, when it's most commonly found in post-menopausal women over 60. In fact, I was the youngest patient my surgeon has had with mucinous cancer and she only sees about 5 patients with it each year. So it's hard to say what all that means. And the fact that it was Grade 2 means it wasn't the slowest of the slow.
An area of DCIS - approximately 3 cm. All DCIS is Stage 0, but mine was also Grade 2. Ductal Carcinoma In Situ is non-invasive cancer that does not (or at least, has not YET) spread beyond the duct that it is in. Some DCIS will never become invasive cancer, but doctors can't yet accurately predict which women's DCIS will become invasive and which won't, so DCIS is often overtreated because the risks of not treating it are just too high. Having DCIS increases one's risk of developing invasive cancer but it's hard to say by how much.

My Scarff-Bloom Richardson (SBR) score was a 6, on a scale of 3 to 9. A score of 3 to 5 = low grade, 6 or 7 = intermediate grade, and 8 or 9 = high grade. The SBR score takes into account 3 things: rate of cell division, percentage of cancer comprised of tubular structures, and cell changes/how similar the cancer cells are to normal cells. So, while less than 10% of my cancer was tubular (the higher percentage, the better), and the cells showed a "moderate" increase in size and variation (as compared to normal cells), cell division was slow. These 3 factors combined made the cancer "intermediate grade." That puts me in an annoying gray zone.

Something else that puts me in the annoying gray zone is my Oncotype score of 15. Oncotype dx is a test that analyzes 21 different genes from your tumor and uses that information to predict how likely you are to have a recurrence in the next 10 years. The creators of the test say that any score under 18 = "low risk," so low that you don't need chemo and/or chemo would be ineffective or not effective enough to make the risks worth the benefit. My score of 15 translates to a 10% risk of relapse in the next ten years IF I TAKE 5 YEARS OF TAMOXIFEN, otherwise the risk is higher. (Oncotype dx does not predict what your recurrence risk is if you take no Tamoxifen.) However, the National Cancer Institute disagrees with the Oncotype people and says that only scores below 11 are considered low risk, and that my score of 15 would actually put me in the intermediate risk category. In fact, that clinical trial that I signed up for was designed specifically to study those of us in the intermediate category, to see if chemo + Tamoxifen is a better treatment than just Tamoxifen. I had a 50/50 chance of being randomly chosen for the chemo category.

To me, what all of this says is I might be low risk, I might be intermediate risk, it depends who you ask, and it's kind of a toss-up. My risk of recurrence EVEN IF I TAKE ALL THE TAMOXIFEN is 10%, which is greater than my risk of having had cancer in the first place.

I also have fibrocystic "disease" (it's not really) with adenosis, stromal fibrosis, and atypical ductal hyperplasia. (A mouthful, geez!) This is a non-cancerous condition, but it's a higher risk marker. It's "pre-DCIS," ridiculous as that sounds. Pre-pre-invasive cancer. Hyperplasia = overproduction of cells, atypical = they're abnormal in some way, ductal = it's the cells in my milk ducts that we're talking about. Adenosis = those abnormal cells are also in my breast's lobules. I'm still not quite sure what stromal fibrosis is, but it's something similar - breast cells doing stuff they're not really supposed to. Lots of info here .

I have heterogeneously dense breasts. The denser one's breasts are, the higher one's risk of breast cancer. Check out Am I Dense for info . There's a lot of buzz right now about how dense breasts are an underappreciated risk marker for breast cancer...that is, the medical world seems to have known for a long time that dense breasts are a risk factor and that mammograms are often ineffective with dense breasts, but few doctors A) tell their patients about their breast density or B) use screening methods other than mammograms. I have to research this more, but anyway, I do have very dense breasts (about a 3 on a scale of 1-4, according to the info found in my MRI/mammo/path reports), and the doctors did tell me that, and that it's a higher risk marker for cancer.

I'm not exactly sure what I think of all of this information together means, but I had to put it all together like that so I'm rightfully focused on what's going on in MY breasts, not those of the women whose stories I stupidly keep reading on the Internet. There are so many stories at both extremes - women who say, "OH, the oncologist told me to take Tamoxifen but I knew I didn't need it and threw it out and just take green tea instead," as well as women who say that their cancer was so tiny/early their oncologist didn't even recommend chemo and just put them on Tamoxifen, but even WITH Tamoxifen, they had a recurrence 2 years later and are now at Stage IV. That woman said, to those of us who are all freaking out about not wanting Tamoxifen, "Tamoxifen side effects are better than Stage IV cancer." That has stuck in my brain.

But I can't let these other women's stories carry too much weight for me, because everyone's cancer is SO DIFFERENT. Before I was dx'd, I was so clueless about EVERYTHING - I didn't know the difference between radiation and chemo (I kinda thought they were the same thing and radiation's what made you lose your hair); and I never even distinguished between the nipple and areola, nevermind knew anything about milk ducts and lobules; and I didn't know that there was so much variation amongst the types of breast cancer. I thought breast cancer was just breast cancer.

It doesn't help me to compare my own situation to other women's and second-guess my decisions based on theirs, because I AM THE ONLY ONE who was a 30-year-old woman with a stage 1 grade 2 mucinous tumor, grade 2 DCIS, heterogeneously dense breasts, and atypical ductal hyperplasia with adenosis and stomal fibrosis.

I wonder if I will ever be at peace with my Tamoxifen decision, instead of continuing to anxiously analyze it from a million different angles. Right now I'm feeling like I have a greater understanding that yes, I DO have high(er) risk factors that might just make the Tamoxifen worth it. There's a lot of activity going on in my breasts that the Tamoxifen will hopefully calm down.

Wednesday, June 23, 2010

Long overdue update

It's been pointed out to me that I haven't updated in a long time!

Briefly:
My check-up with the radiation oncologist went really well, mostly because HE was out of the office that day and had a female rad onc filling in for him, whew!! So much easier for me. And she was super impressed with my healing, said everything's great, and if it weren't for the incision scar, she wouldn't even be able to tell which breast was treated. WOOHOO! (There's still swelling, which had worried me - shouldn't a breast that's had tissue removed 3 times be smaller, not bigger?? - but she said it's normal and it may just take a few more months to go down. So, I'm cool with that!)

I'm also on day 7 of Tamoxifen with no problems. Taking the first one was the hardest - I cried about it. I've heard that it takes a few weeks for side effects to show up, if you're going to have side effects at all... and maybe I'm one of the lucky people who won't! Although, I think hot flashes will pretty much be a given. We'll see.

So that's why there haven't been updates - I'm doing really well. My "struggle" now is with how to get back to "normal life" - new normal, whatever. Cancer treatment was intense and foregrounded in my life for 6 months, but now that's over. I don't want to be so focused on it. But it's weird, I still read the breast cancer message boards several times a day, totally just out of habit, because it's what I did for months. I don't want to be that immersed in Cancer Land, and I don't want to be blogging about stuff in a Cancer Blog so frequently... but at the same time, it's not like everything's just "over" and I can throw a party and get on with my life. Not when I'm taking a DAILY anti-cancer pill, and will be having regular check-ups with various doctors for years (if not forever?!), and mammograms and MRIs and all of that. And I have made, and continue to make, big changes in my life with the goal of making sure the cancer stays in remission for the rest of my life. (Add the usual disclaimer about how I know nothing can guarantee that, blah blah). Changes such as improving my diet (it's an on-going process) in specifically anti-cancer ways, being very conscious of my work life, going to therapy weekly to process emotions and past traumas, detaching from stressful relationships that no longer serve me, etc. It's all good stuff, stuff that would be good for its own sake, not just as "recurrence prevention."

I'm not sure what that means for this blog - that cancer is much, much less of a focus of my life now that treatment is over, but not something I can leave behind/ignore entirely. I'm trying to find the balance. I'm not sure if I will end up only sporadically coming to post here if/when I'm having issues with cancer stuff (e.g. Tamoxifen side effects, or doctor appointments that I need to ramble about), or if I should try and turn this into a more general blog about my life, and write about lots of stuff that's not cancer-related. But it IS called Britta's Boob Blog, not Britta's All-Encompassing Blog. Hmm.

See, this is why I haven't been blogging - I'm just not sure how to do it right now! I feel like I should be "updating regularly" as "usual," but... I don't want to write about cancer stuff when I'm not thinking about/dealing with cancer stuff just for the sake of having new content for my blog... you know?

Tuesday, June 8, 2010

Miscommunications

The other day, I think I mistakenly gave an acquaintance the impression I'm dying.

The parade was about to start in a few minutes, so we were both kind of rushing around trying to get ready for it, and stopped very briefly to do the whole "Hi, how are you" thing. She asked what's next for treatment, and I told her I'm starting Tamoxifen soon, which I'm really not looking forward to. Then I think she asked if there are bad side effects, and I said something like, "Yeah, and the prescription is for FIVE YEARS... I doubt I'll last that long!!" I totally meant "I doubt I'll be able to handle taking the Tamoxifen for that long and will stop taking it before the 5 years is up," but I worded it ALL wrong because we were in a rush and she must have thought I meant that I'm expecting to be dead in 5 years, because she immediately gave me the biggest hug. Oh noooo! I hastily added some random babble about "No, no, my prognosis is great!" but I don't think that made sense either and we both had to rush off anyway.

Now I'm feeling like a jerk for unintentionally making someone think I'm dying!!! Reality is, I am soooo healthy and full of life right now and Tamoxifen or NO Tamoxifen, I'm not going to DIE from breast cancer.

Ironically, I unthinkingly wore this T-shirt later in the day -



To me it's sort of a statement against the cancer - I love how the words go RIGHT across my breasts. :)

Now I'm wondering, should I email this woman to clear up the miscommunication and assure her I'm not dying?!? I don't want her to think I am! But actually emailing her about it seems even more awkward and weird! "Hi, I'm sorry, I'm really not dying!" Oh, geez...

Sunday, June 6, 2010

Love my Life!


Me and Ruby, getting ready for the parade!!

Tamoxifobia

So, the visit with my oncologist did not go so well. I pretty much cried through the whole thing, which is unfortunate, because it made it difficult to have a rational conversation and get my questions answered - or even asked.

I picked up the prescription, but it's still sitting in my car - I can't even bring myself to bring it in the house yet, nevermind my body. I got permission from my onc to wait until June 17 to start taking it, which is the day after my post-radiation thermogram. I figured if I was already taking the Tamox at the time of the post-radiation thermogram, we wouldn't know if the results of it were due to the absence of radiation or the presence of Tamox. But maybe I'm just thinking up stall tactics.

I cried over the Tamox for a while on Friday, but once I stopped thinking about it and talking about it and totally blocked it from mind, I returned to my HAPPY, HAPPY LIFE.

This is how I spent my weekend -



Partying it up, literally dancing in the streets, with all "my people." I feel so happy, healthy, strong, ALIVE!!! I don't want the Tamoxifen to ruin this!!!

I think I'm developing a Tamoxifen phobia, and probably it won't be nearly as bad as I'm fearing. I've decided to try it for 6 months. If the side effects are unbearable and not decreasing, I'll stop taking it.

The main problem is that I'm not comfortable with my decision. I'm EQUALLY afraid of the consequences of taking the Tamoxifen, as I am of the consequences of not taking it. I have heard so much conflicting information about Tamox that it's overwhelming. For every story of a woman who went through Hell with Tamox and found health only after she quit it in favor of succesful alternative treatments, there is a story of a woman who said no thanks to Tamox and did alternative treatments and got a nasty recurrence of cancer. There are people I trust who think it's extremely important for me to take it, and people I trust who think I'm putting myself in danger by taking it. Bad things can happen if I take it, and bad things can happen if I don't. And I really, really JUST DON'T KNOW what would be right for me.

So I'm just going to try it. I'm not making this decision because I genuinely feel it's the best one, but because I'm so freakin tired of endlessly reading, researching, questioning, weighing my options, ad nauseum and needed to JUST CHOOSE. I'm at the point where I feel like the paralysis of indecision was worse than either choice could be.

Saturday, June 5, 2010

Mocha :)

You know how I gave up sugar in January? The cravings stopped after a couple of weeks, and now it's been 5 months and I really and truly do not miss all of the cookies, sundaes, brownies, sugar-y drinks, pie, etc. But the hardest thing for me to give up was my mochas... so I decided to allow myself two mochas per year: one on the day of the Strolling of the Heifers parade (which also happens to be the anniversary of when I had my first mocha ever), and one in January, for my birthday.

TODAY WAS THE DAY! The first mocha I'd had in 5 months! S and I went to Coffee Country at 8 am, and I giddily ordered my double iced mocha with whipped cream.

It was so beautiful and amazing, the most delicious mocha ever. I spent a good 40 minutes drinking it, savoring every sip. So heavenly. I'd been looking forward to this mocha for weeks...the anticipation made it even better.

And I'm happily surprised to discover that I'm not even craving another. I thoroughly enjoyed the one I had, but now I'm looking forward to how amazing my 2nd annual mocha is going to taste in January, when I've waited 7 months for it!

I was worried that the person making my mocha today would be a newly-hired employee in training, and it wouldn't taste right... but thankfully, my mocha was made by the owner of Coffee Country herself, and she makes damn good mochas. I thanked her at least 3 times and explained that it was my first mocha since January, and she smiled, but still, I don't think she understood the enormity of the event to me.

I'm so grateful. Isn't it so beautiful? Look how it glows in the sunbeam -

Wednesday, June 2, 2010

F*ck

oh, god. hearing my awesome CRT results makes me not want to take tamoxifen. my body is doing sooooo well right now...i'm scared that the tamoxifen (with its side effects) is just going to fuck it all up, and for WHAT?? it's only worth it if i'm actually in serious danger of the cancer coming back, and i really don't feel like i am. this past month has been so great - the first time in HALF A YEAR that i could just be happy and live my life, instead of having to deal with one stupid cancer treatment after another. but now it feels like, "okay, vacation's over," because in 14 hours, i'm meeting with my oncologist and she's going to give me the tamoxifen prescription, and i'm back to taking a stupid anti-cancer pill every day. i hate not knowing what the tamoxifen will be like - e.g. whether i'd feel just fine, or if there would be all kinds of horrible side effects.

i'm feeling scared of the unknown, and resistant, and really ANGRY. not at my oncologist, just the situation.

please don't tell me to take the tamoxifen and don't tell me not to take it. i don't want opinions and advice about that, because i'm overwhelmed by too much already. i'm just venting, because this is the place where i can do that.

CRT results

Today I had an appt with a doctor at the multidisciplinary holistic health clinic to go over the results of my CRTs (thermograms), one before radiation and one during. These thermograms tested 80 different points on my body from the waist up, to provide a picture of my overall health.

In a nutshell: MY BODY IS AWESOME!!! :)

I'm still waiting for them to provide me with a written interpretation of the results, because right now I only have the printout of the report, which says things like "CI 3.9" (I made that up), and this doctor tells me, "That's really good!!", but that's not helpful if I've already forgotten what the CI stands for or what the 3.9 is on a scale of, you know??

Anyway, what she told me, basically, is that nearly all of the tested parts of my body are functioning very well. My gut/digestive system ("deep immunity") is great, although my lymphatic system ("surface immunity") was stressed during radiation. That's not really a bad thing - it was not shut down or malfunctioning, it was simply working really hard and thus needs a boost, which makes SENSE, given the context. My body's vitality and "chaos index" (i.e. ability to respond appropriately to stressors) are great. I don't fully understand this part, but something else the CRT tested is "tumor terrain" (?), something about checking for areas where you may be in danger of abnormal cell growth, and my scores were GOOD in both thermograms! I'm in the normal/healthy range! The functioning of my breasts was good, too, and there was only a SLIGHT difference (drop) during radiation!

Apparently, when my naturopath first saw the comparison between the two thermograms and saw that much of my body was in "hyperdrive" at the time of the second CRT (during radiation), she got a bit worried...but she told me she doesn't have much experience interpreting CRTs, and that's why I had a separate appt with another doctor today, who DOES have experience with CRT interpretation. And her explanation was that yes, my body was working extra hard to deal with the unexpected assault of radiation, but in a GOOD way - an organized and appropriate way, as opposed to just shutting down or getting confused.

LOL, I'm very inarticulate about it all and don't know the correct terms for everything, but you get the gist! I'm trying to think of an analogy. Okay. If you're running around a track and suddenly there's a hurdle in front of you, you JUMP OVER IT and keep running. Jumping over the hurdle takes work but it's the correct response. WRONG response would be to, say, stop running, lie down on the track and cry... or to hop around the hurdle on one foot three and a half times while singing Twinkle Twinkle Little Star.

What the CRT showed was that, hell yeah, radiation was a hurdle for my body and responding to it took a lot of work, but my healthy body DID jump over that hurdle and keep on running. It did not lie down and cry, nor did it freak out and go apeshit!

I LLLOOOOVVEE my super smart, hard-working, healthy body! My body knows what it's doing! And I'm gonna keep sending it love and feeding it healthy things and moving it in ways that it likes and giving it all the rest it needs so it can JUST KEEP DOING ITS THING!!

Tuesday, June 1, 2010

EW

I just bought a can of wild caught, all natural, on sale SARDINES. Dr. David says they're very anti-cancer, and the least polluted of fish because they're so small. They are full of omega-3, calcium, phosphorus, iron, potassium, protein, B12, selenium, and vitamin D.

AND THEY ARE FREAKIN DISGUSTING. Okay, so I haven't tried one yet. But I OPENED THE CAN! People EAT these?! Do you have to...like...skin them or something first?? The package says they are "delicious meaty portions cleaned and scaled." Do you not have to cook sardines that come in a can? They're already cooked? There are no cooking instructions on the package, so you really just PICK ONE UP AND EAT IT??






I have to Google "eating sardines," apparently. Have any of you eaten a sardine? What's it like? Oh, geez. The stupid can doesn't close now that I've opened it, so I have to eat these things before they stink up the house. Right now the can is sitting on a shelf near the computer. I'm just looking at it. From a distance.

UPDATE: Okay, now it's the following afternoon. After lots of reading about sardines via Google last night, and staring skeptically at the sardines, I did try them!! I discovered that while they taste really good to me - similar to tuna, maybe a little saltier - the look and feel is what grosses me out. The blotchy browns and grays, the weird stringy things inside if you pick at them too much, the itty bitty SPINES, ugh... But they are so freakin healthy I want to like them and eat them! I got some great advice and tips from my Facebook friends on how to make them more appetizing, and, SUCCESS! I just had a delicious lunch of a sardine sandwich on whole wheat sourdough bread. I mashed the sardines up with Goddess dressing (contains turmeric and black pepper - also very anti-cancer) and nutritional yeast, and pretended like it was a tuna sandwich, and it was awesome.

I'm now officially recommending sardines. :)