Starting Chemo March 2015

Msmath

Just returned from my PS. I went without a wig. Feeling more relived. The drains came out! Now I can start to think about going back to work. I think emotionally I need to go back to work but now I'm afraid I won't be the teacher I was before bc. My biggest fear is the chemo brain. It is hard to teach math when you can't get your train of thought out of your mouth or you just lose your train of thought altogether.

eheinrich

Hooray for no drains! They are the worst! Also good for you going wigless. You look cute.

Jackbirdie

Special- Feeling pretty good about the first half of your post, a little sad about the latter. Those are frightening statistics, every time I hear them anew. Even moreso when considered against the backdrop of what they (don't) know about why we get it, how to get rid if it, and how to keep it from coming back.

MsMath- I feel compelled to share that the part of me I feared for the most on this dumbass journey was not my hair, but my brain. I was never considered a beautiful woman, and I considered my brain to always be my best asset.

Since chemo, I have definitely noticed some diminishment. I like to joke that I had brains to spare, but the truth is, I resent every lost capability. But I noticed one thing. As my brain has gotten smaller, my heart has gotten bigger.

Having cancer has not made me a better person. I'm not saying that. But it has forced me to look at, and develop other aspects of me. There are many coping mechanisms to help with the lessened functionality.

But this is what I want to say to you: it takes just as much heart, maybe more, as brains to be a teacher. A good teacher. You are a good teacher. You will navigate around this roadblock and your experience will add depth, and I suspect a lovely patina, to your being. Do not fear. Going back to work will help you and you will be helping your students. That will bring you much joy. Good times ahead.

ETA: you do look cute and YAY! For no drains!

Italychick

I have read about cases of DCIS spontanteous disappearance (but who knows what is true on the internet), but I guess a better way to phrase it would have been "DCIS that never kills the person". Before mammograms, it wouldn't have mattered what the age of the person was (young or old) if the DCIS never killed them, or didn't turn invasive until the person was older, like pre-menopausal. I'm not sure my thought process is as clear to others as it is to me, but I'm not sure I agree that breast cancer is on the rise. More early cases, like DCIS, are being diagnosed and treated, and a percentage of those would never have killed the person, so would never have been recorded as a cancer related illness or death.

Are the current statistics weighted to take into account the increase in world population? At some point in my life I seem to remember a world population of about 3-4 billion, now I think I hear numbers like 7 billion. I'm wondering about "statistics" because there is probably a percentage of the population, young or old, who will acquire disease through genetic mutations or abnormal cell growth. Hence, let's say .5% of 4 billion people is a smaller number than .5% of 7 billion people.

http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042725.pdf has a chart. But it is weighted to look at the cancers based on a 2000 population. I have had a difficult time finding raw numbers compared to each year's current population.

Am I wrong in seeing the below graph as a pretty flat line since 1975, and in actuality the all ages trend line is going down? The black line is for the entire population, and it looks pretty flat to me. The only area that seems to have shown a rise is in older women, but could that be related to an aging baby boomer population? And even that line is now declining.

Here are direct quotes from the article

"Incidence rates of in situ breast cancer rose rapidly during the 1980s and 1990s (Figure 4a), largely because of increases in mammography screening. The increase in incidence was greater in women 50 years of age and older than in those younger than 50." and

"Invasive breast cancer - Much of the historic increase in breast cancer incidence reflects changes in reproductive patterns, such as delayed childbearing and having fewer children, which are recognized risk factors for breast cancer. However, between 1980 and 1987, breast cancer incidence rates increased rapidly, due largely to greater use of mammography screening, which can detect breast cancers too small to be felt. The widespread uptake of mammography screening inflated the incidence rate because cancers were being diagnosed 1 to 3 years earlier than they would have in the absence of screening. Rates stabilized in the early 1990s, followed by a slower increase during the latter half of the decade.

Somebody said "there are lies, damn lies, and then there are statistics." I am always extremely dubious about statistics unless I can see the raw data for myself.

My reason for pointing these manipulations out is that younger women, like my daughter, are terrified because they see propaganda all the time about how breast cancer is on an alarming rise, and I hate that this fear is being put into young women. So as a result, they are more aggressive with testing, and now we have an era of young women having their breasts prophylactically removed, and that just makes me furious.

Trvler

Sloth: This is the BS who, when I asked if it made any difference that I had ILC, basically gave me a 'don't worry your pretty little head about it' answer. So I don't know why the change. His scheduler left me a message this am. I am not calling her back. It's obviously an appointment to convince me to remove the nodes.

I met with the new radiation oncologist this am and SHE didn't recommend having the nodes out either. She feels radiation will be sufficient and also cited the concern about lymphedema risk. I just don't see any reason to continue with the people at the other facility. They just stress me out (and have the entire time).

Jackbirdie

Very good points, Theresa. What we need is a population adjusted and age differentiated graph.

There must be one. Is invasive breast cancer really on the rise at the per capita level or not?

Anybody?

Trvler

Theresa: I was wondering something similar. That 21 number that Leigh mentioned made me wonder how that compared as a percentage to the population. An absolute figure, unless compared with another number, is irrelevant? And again, is there really a huge increase or are we hearing about it more because of internet, news cycle, celebrities…etc? I don't know. Just putting that out there.

Italychick

Allison, I would have had a hard time not popping him upside his pretty little head. I have to say, I get so tired of that kind of attitude. Even with my MO, I get a call saying all your lab work looks fine, and then when I ask for specifics they kind of act like, what a PITA this woman is. But you know what? Those people can go straight to hell, they work for me.

But shame on them for putting "spiders in your brain" and making you have to second guess your treatment plan. As if there is any value in that. I feel that most doctors have a personal "agenda" or way they like to do things, like they have adopted it as their platform, and they get reluctant to deviate from what they think is best. The best doctors, in my opinion, listen to the patient and hear what they are saying and take that into account.

littleblueflowers

About those breast cancer statistics for younger women- I gotta wonder if the uptick is not more due to increased screening and awareness nowadays? I mean, if I hadn't known about breast cancer and advocated for myself, I'd be dead by now or very close to it, and I gotta wonder about how many young women just die of undiagnosed breast cancer, and never get counted, simply because this is though to be a disease of "older" women? I also wonder if that's why statistically, young women are more likely to die of breast cancer- because if they do get treated for it, it generally gets caught at a much more advanced stage, simply because we are told not to worry about it until we are 40??

Jackbirdie

you can bet if men's dicks were killing them off they'd be worrying their pretty little heads.

Oh! A tee shirt idea. Save home plate!

Italychick

Littleblue, true comments. Even for me, at age 52, my MO said it had probably been in my body 8-10 years, so that would have made me 42-44 if I had gotten an early diagnosis. So much for a baseline screening mammogram at 40 - guess that was completely worthless. I had my baseline mammogram (actually I had 2), but then I believe I was told I didn't have to get anymore until age 50. Which I was lazy about and delayed until 52. So had I gone for regular screening, I guess I would be in the class with pre-menopausal women.

Jackbirdie

Jen- didn't mean to derail your thought. Yes I think what you say makes a lot of sense.

Mostly I'm just very happy you did advocate for yourself. Cuz I likes ya.

molly1976

"I also wonder if that's why statistically, young women are more likely to die of breast cancer- because if they do get treated for it, it generally gets caught at a much more advanced stage, simply because we are told not to worry about it until we are 40??"

I wonder this, too, but am afraid to ask. If my Stage IA cancer is still deadlier than an older woman's just because I'm young, I kind of don't want to know.

Jackbirdie

Theresa- have you ever gotten a feel for how they guess how long the cancer has been there? I have had mammograms every year forever. I know 30% of bc tumors can or are missed by mammo.

Despite the above,I am wondering then why something 1.5 cm this year was invisible last? (I'm speaking of myself, grade 2). And anecdotally, some women I've spoken to and read posts from here describe noticing dramatic enlargement within months.

Does it reach some kind of critical mass then grow exponentially after that?

eheinrich

I had my mammos starting at 40 not yearly but maybe every 2 yrs. Diagnosed at 46. Ya just never know.

Jackbirdie

Molly- I can't think of why it would be more dangerous, two cases, standing side by side, one in a young woman and one of say, 60. Same grade, same size, same other stats. As Special noted earlier, older women's immune systems are weaker. It would stand to reason you are therefore safer, having caught it early. But I don't know shit. Only slightly less than anybody else because it seems nobody knows shit about it either really.

Regardless, it is one of the most unfair things I can imagine to have to face this decades before I've had to. You will have all the same fears, but for many more years. I am so very sorry you've had to deal with this. But also grateful you caught it early.

Jackbirdie

Molly- I can't think of why it would be more dangerous, two cases, standing side by side, one in a young woman and one of say, 60. Same grade, same size, same other stats. As Special noted earlier, older women's immune systems are weaker. It would stand to reason you are therefore safer, having caught it early. But I don't know shit. Only slightly less than anybody else because it seems nobody knows shit about it either really.

Regardless, it is one of the most unfair things I can imagine to have to face this decades before I've had to. You will have all the same fears, but for many more years. I am so very sorry you've had to deal with this. But also grateful you caught it early.

Trvler

My main tumor is coincidentally in the exact same spot I felt pain and had a mammogram at Cigna in LA 22 years ago. I have been told they aren't related. But I just can't buy it. I was told then it was likely a cyst and to cut back on caffeine, of which I have never consumed much. I have always been a one cup of coffee a day gal and never was big soda or tea drinker.

Italychick

Katy, not sure, but I would think the doubling size factor would come into play, i.e., like 1 cell becomes 2, 2 become 4, 4 become 8 and so on. More cells = higher doubling rate. I am totally speculating here, anybody with better knowledge jump in anytime and correct me. So a 1 mm becomes 2 mm in say, 45 days, 2 mm becomes 4 mm in another 45 days, 4 mm becomes 8 mm in another 45 days, so in 4.5-5 months theoretically a 1 mm growth can become .8 cm, if that makes sense, depending on the mitotic rate of cell division I guess. I don't know if it is that simplistic, but that's my interpretation.

I also wonder how many cancers start out grade 1, slow growing, then bust out of the ducts to become invasive, and then start growing more aggressively. My lump was DCIS and IDC admixed together, so did it start out as slow growing DCIS and then become invasive? And it was determined to be a Grade 2 which I think is not typical for HER cancers? I'm not sure.

The best explanation I can come up with is the doubling factor. I know at the beginning of December ultrasound said mine was 1.1 cm, and after surgery January 23rd, it was 1.3 cm, so I could see the .2 cm increase over a period of close to 60 days as being sensical, given the size of the growth. But there are women who have tumors that grow really, really fast. It's a mystery to me.

SpecialK

Because breast cancer is thought to be more of a disease of aging, breast cancer in younger women is viewed as more "aggressive" for a couple of reasons - known genetic mutation (BRCA 1 & 2) causing a diagnosis in a woman at a younger age - often TN, and/or that if breast cancer is found in younger women it could mean that their normally functioning immune system is impaired, or their cancer is biologically different from breast cancer among older patients.

Stats say that while the incidence of breast cancer diagnosis in younger women rose in the last 30 years, it is still a small number - from 1.5 in every 100,000 30 years ago, to 3 per 100,000 now. Small number unless you are one of those who has it, right? Keep in mind also that less than 10% of breast cancer occurs in those under 40. More new cases of breast cancer are diagnosed in the age group over 75 than in the age group that is 44 and younger.

jackbirdie - according to the SEER data breast cancer diagnosis rates have been relatively stable for the last 10 years, but death rates have not declined. So if the population increased over that time I would assume that means the per capita rate has declined somewhat.

Trvler

Again, Theresa. That's how I figured it worked, too.

I was told that chemo is more effective the higher grade the cancer is.

Jackbirdie

T- that makes some sense to me. Thanks for doing the math.

I know none of this matters to me now but I have a morbid fascination with it. And it is just plain intriguing to me that so little progress has been made in prevention, cure, anything. A lot of money and brain power have been thrown at it. And almost no results.

molly1976

Theresa, my tumor was 1.4 cm on mammogram & ultrasound and 1.6 when they took it out 2 weeks later, but my MO told me the difference in size was probably not real but was just related to margin of error from the ultrasound, plus some leftover blood from the biopsy.

DavisD

Great discussion ladies. I'm too brain dead to participate but I can still appreciate.

Allison, I'm sorry you're facing such a tough decision but I feel you're leaning in the right direction.

BB-Hope all went well, today I think?

Thanks for all the hugs and good thoughts!

Italychick

Katy, not sure that I 100% agree with little progress in prevention, cure, etc., but I don't know enough to engage in rhetoric on the subject. It is a fascinating one. I'll speak up when I think I know something, but I haven't looked into the effectiveness of treatment now vs. how effective a radical mastectomy with cobalt radiation was.

I do think in terms of Quality of Life during and after treatment that tremendous advances have been made. But cure? Has any cancer ever been cured and disappeared off the planet?

DavisD

Lee-I wonder how many were DCIS? I was diagnosed w/DCIS in 2011 and my good friend in 2014. I remember feeling like I couldn't say I had breast cancer because it hadn't left the ducts and there is debate over whether to even call it "carcinoma" but on the other hand, for the rest of my life I would have to check "yes" for the question "ever been diagnosed with breast cancer?" Of course mine changed this year but my friend is second guessing her mx and doesn't feel comfortable attending BC events because she didn't go through chemo/rads/etc. I felt the same way when I attended a support group for BC, felt bad for those poor ladies losing their hair and suffering such brutal treatments....Just a thought, hope it made sense.

SpecialK

I definitely don't think you can use ultrasound as a finite measurement. You can have a mammo, US and MRI all on the same day and get a different measurement on each modality - and two US in a week with a difference in tumor size.

Unfortunately, cell division is not as straightforward with breast cancer as with normal cell division - breast cancer cells are affected by estrogen, Her2 overexpression, and other signaling that can cause very rapid and uncontrolled growth patterns. Some cancers are "indolent" and slow growing, others grow unchecked and quite rapidly because there are so many variables based on so many factors.

molly1976

For some cancers enough progress has been made that I would call it definite, strong advancement. Childhood leukemia used to be a death sentence and now the vast majority of kids are fine after treatment. I am feeling pretty positive about the development of Herceptin for myself, also!

Italychick

SpecialK, awesome - glad you jumped in. I was struggling with the words to explain how a tumor could grow fast in one person, and not in another one.

Trvler

Again, Theresa. That's kind of how I look at it. I might sound pessimistic but I think they are still a while away from a 'cure'.

Thanks, Diane. I chose that doctor in NOLA for reason and I love him. I had a conversation with one of the nurses there today and I was glad to hear they feel as strongly about him as I do. They know he is getting up there in age and nearing retirement age. Actually he is well past it at 71 or thereabouts. The original decision to go to NOLA was based on the plastic surgeon but felt as good about him (the BS) as the PS.