Next steps

It's been over five years since my breast cancer diagnosis. At this time five years ago, I was undergoing radiation therapy, and starting on tamoxifen, a drug that has been proven to decrease recurrence of breast cancer. I've been on tamoxifen for five years. Now it's time to plan out what to do next. 

With cancer, you always think it's over, and it's not.

The issue at hand is that breast cancer can be a very tricky cancer. Even if discovered early and treated appropriately, it has this nasty tendency to come back in a much worse form. As an article in Cancernetwork.com puts it, "although women with early-stage hormone receptor-positive breast cancer have low recurrence rates initially, they have a constant and unrelenting risk of relapse that extends up to 15 years despite the use of adjuvant therapy." (italics mine)

The fact is, up to 30% of women have their breast cancer come back as Stage IV: metastatic disease. There is no cure for Stage IV. You can live with it for a while -- maybe even a long while -- and there are many treatments to try, but eventually, you will die from it.

Estrogen receptor (ER)-positive breast cancer is unique among common solid tumors in that no patient can be considered cured, and recurrence rates remain almost constant for up to 20 years. - See more at: http://www.cancernetwork.com/oncology-journal/duration-aromatase-inhibitor-treatment-breast-cancer-role-carryover-effect#sthash.LZIJaamQ.dpuf

Estrogen receptor (ER)-positive breast cancer is unique among common solid tumors in that no patient can be considered cured, and recurrence rates remain almost constant for up to 20 years. - See more at: http://www.cancernetwork.com/oncology-journal/duration-aromatase-inhibitor-treatment-breast-cancer-role-carryover-effect#sthash.LZIJaamQ.dpuf

Sorry to be so harsh, but it's the truth.

So I've had the surgery and the radiation and taken the hormone blocking medication (tamoxifen) for the required five years, but that still may not be enough to prevent it from coming back. So that's why I headed back to the hospital last week. To see what the plan should be for the NEXT five years.

Just going to BIDMC is always kind of strange. They use a particular antiseptic hand wash in the bathrooms, and the acrid smell pulls me right back to five years ago.

I made my way up to the ninth floor, to hem/onc, to meet my new oncologist Dr. Lowell Schnipper. This is my third oncologist in five years, and the first time I've had a male. He's an older gentleman, and he had a very kind, gentle way about him which I really appreciated. He didn't beat around the bush. He is concerned about the blood clot I had in my leg last year, and worried that if I continue on tamoxifen, this might be a problem in the future. Also, he talked about research that shows that using tamoxifen and a different medication called an aromatase inhibitor in sequence has better outcomes then tamoxifen alone. That means that to keep possible future cancers at bay, it's best for me to continue with a different drug, an aromatase inhibitor, possibly for the next five years.You can read more about aromatase inhibitors (know as AIs) here.

The issue now is whether I am pre-menopausal or post-menopausal. They want to switch me to the aromatase inhibitor, but I can only take if if I'm post-menopausal. So suddenly I'm hoping that I am post-menopausal (although I don't think that I am based in my family's history of late menopause). If I'm not, other options would be to have my ovaries removed which would make me postmenopausal, or to take a monthly shot of Lupron which would shut down my ovaries and then I could take the aromatase inhibitor. Either way it seems like tamoxifen and I are about to break up. (Not that it's been such a great relationship.)

So the current plan is that I go off tamoxifen for 6 weeks, then get a blood test to measure my hormones, and then we will have a better idea if I am pre- or post-menopausal. Then we will make a decision what to do next.

So I'm sitting with this doctor, and all of a sudden I find myself saying to him "I know that breast cancer can come back in a much worse form. I have a 14 year old. I need to stay alive for as long as I can."

All of a sudden I'm talking with this person I just met about life and death. It's really kind of freaky.

By the time I got home, I was emotionally exhausted. It really never ends.

What it means when there is bombing in southern Israel

I first learned about it last night on Facebook, which is arguably a weird source for news, but there it was: "This evening, Gaza terrorists fired more than 30 rockets at Israeli communities." Checking a more reliable news source, I found out that, indeed, over 40 rockets had been fired from Gaza into communities in southern Israel.

The Code Red siren was sounded in several southern Israeli communities. Residents were instructed by the IDF to remain in bomb shelters.

I traveled in Israel about a year ago, and our group visited some of these communities in the south of Israel that are frequently attacked by rockets from Gaza. In particular, we toured a town called Sderot that is the closest town to Gaza. Every home has a safe room. Every bus stop is built of reinforced concrete and looks like a bunker. Every school and park has shelters. The reason? Try to imagine that at any moment, you could hear an alarm that means that you have 15 seconds to get to a bomb-proof shelter. 15 seconds. Then the bombs fall.

These videos are hard to watch. They make my stomach clench. But you should watch them.

https://www.youtube.com/watch?v=bLYVSCL5usA
https://www.youtube.com/watch?v=yxUlrJPDAHw

This next one is the hardest to watch:
https://www.youtube.com/watch?v=ygb6VrW8WZw

The situation has improved recently. There are less attacks. But each time one happens, the result is the same. Everyone runs to the shelters, and it's terrifying. How can people live like this? Should they be expected to live like this?

Hook-up culture. OMG.

OMG.

I always thought I was fairly "hip" as far as parents go. I used to be a sex ed teacher, and J and I talk fairly freely about sexual topics. He seems open to asking me questions about sex. It really hasn't been a problem.

But...OMG.

Do you know what "hooking up" means? How about "hook-up culture"?

I was at a workshop last night with a group of other parents, and the speaker informed us that the norm nowadays - the NORM! - is to have sex first and THEN to talk to the person afterwards and maybe decide to have a relationship of some kind. But maybe not. The thing to do is to have sex. "Hook up." Period.

That's the norm!

OMG.

She gave us some historical background. In the 1950s, you were supposed to stay a virgin until you were married (for women, at least, that was expected). Dating was something you did to get to know someone in preparation for marriage. During the '60s and with the rise of the sexual revolution, the feminist movement, and availability of effective birth control, there was more uncommitted sex, "casual sex." But now, she said, "hooking up" has become the norm.

And today: sex first, talk later. WHAT?!?!?!

What about relationship? What about communication? What about love?

None of that, for this generation. It's just sex.

OMG.

This is from an article I just read on the American Psychology Association website called Sexual hookup culture:

It is an unprecedented time in the history of human sexuality. In the United States, the age when people first marry and reproduce has been pushed back dramatically, while at the same time the age of puberty has dropped, resulting in an era in which young adults are physiologically able to reproduce but not psychologically or socially ready to "settle down" and begin a family (Bogle, 2007; Garcia & Reiber, 2008).

These developmental shifts, research suggests, are some of the factors driving the increase in sexual "hookups," or uncommitted sexual encounters, part of a popular cultural change that has infiltrated the lives of emerging adults throughout the Western world.

Hookups are becoming more engrained in popular culture, reflecting both evolved sexual predilections and changing social and sexual scripts. Hook-up activities may include a wide range of sexual behaviors, such as kissing, oral sex and penetrative intercourse. However, these encounters often transpire without any promise of — or desire for — a more traditional romantic relationship.

OMG.

I'm going to hide under a rock now. And I'm building a box to hide my son in until he is 30.

Getting older ain't for sissies

I picked up a copy of More Magazine the other day – a magazine “for women of style and substance” – mainly because it was staring me in the face while I was waiting to check out at CVS, and also because I’m considering submitting an essay to this magazine. From what I read, More targets women ages 30 and up.

Once I started flipping through More, however, I became completely engrossed in the ads – much more so than the actual articles. Of course, there were the usual ads for makeup, jewelry, clothing, and diet products. But there also were other ads that I wasn’t expecting.

 Here is a list of the ads in a recent issue of More. I am not making this up.

• Age defying makeup and hair products 
• Night treatment for skin 
• Hair regrowth treatment 
• Prescription medication to help with painful intercourse (2 ads: 1 for a pill, and 1 for a cream) 
• Lubricant for sex 
• Overactive bladder relief 
• Fiber for constipation relief 
• Natural progesterone supplement to reduce the symptoms of aging 
• And a brand new product, liners that you wear in-between your buttocks for accidental bowel leakage (ABL) 

So what do you think? According to More Magazine’s advertisers, women 30 and over are dealing with dry and wrinkly skin that needs defying, hair that needs re-growing, intercourse that needs lubrication, bladders that are overactive, and bowels that leak, as well as bowels that do the opposite, and jewelry to cheer us up while we wither in our old age.

And this isn’t even AARP magazine.

Ladies, we are screwed.

Mammograms in photos

With all the mammography controversy these past few days, I've been noticing a number of stock photos that are just... well, take a look yourself. These are all via iStockphoto.com.

Hello, welcome! Glad to have you here! But I think you forgot to take off your shirt and put on your lovely gown!

Great, you put on your gown! And glad to see how happy you are! But now we really do have to take off the gown to do your mammogram.

Okay, you can just take one arm out of the sleeve, and we'll try it that way.

Good try! A tube top AND a come-hither look. But really, you have to take it off to get the mammogram done.

Yes, that's more like it. Shirt completely off. Nice jeans and belt!

Yes I just need to give you a hug so I can get you in the machine....

Just relax....Oops, I think you took everything off by mistake!

This is what getting a mammogram REALLY looks like. If they showed it like this in photos, no one would do it.

Earlier isn't necessarily better

Well, everyone’s up in arms again about mammography and whether it is effective or not. Today’s culprit is an article in the British Medical Journal that analyzed a large Canadian study and found that mammography led to no reduction in mortality from breast cancer. Some are vehemently arguing that this study is flawed. But, this study builds on other studies that have had similar findings. I’m not ready to dismiss it yet.

Even though it goes against the common refrain, when it comes to breast cancer, early detection doesn’t necessarily mean better outcomes.

I know, for years we’ve been told: “Get a mammogram, catch it early, get treated, and you’ll be fine." But that is not always the case.

The reality is that some breast cancers are very aggressive, and even if they are discovered early and treated, will eventually metastasize and lead to death.

Other breast cancers are not aggressive, and will not spread and cause harm, even if left untreated or if they are treated later on. And some breast cancers may even go away on their own.

The problem is, right now we don’t know how to determine if a particular breast cancer is going to be aggressive or non-aggressive. We have clues, but we don’t know for sure. So we have to treat every breast cancer as if it’s the aggressive kind.

That is what leads to overtreatment.

Another problem is that, for an individual, this information is not helpful. If your doctor finds a tumor in your breast, what woman is going to say: okay, I’ll wait a while and see if it’s an aggressive or non-aggressive tumor? That kind of decision could cost a woman her life. On the other hand, submitting to unnecessary treatment can cause all kinds of side effects and medical issues that might be completely, well, unnecessary.

Here’s another way of looking at the issue of whether “catching it early” is really important. Let’s say there are two women, Jennifer and Sandra. Jennifer finds out about her breast cancer from a mammogram when she is 50. She is treated with surgery, radiation, and chemotherapy, and does well for a while. However, in spite of all the treatment, her cancer metastasizes when she is 55, and she dies at age 57. So you could say that after her cancer was discovered, Jennifer survived for 7 years.

Sandra finds out about her breast cancer when she is 55, when it is Stage IV and has already metastasized. Sandra dies at age 57. So you could say Sandra only survived 2 years after diagnosis. Both women die at the same age from a similar cancer, but Jennifer’s tumor was discovered earlier and treated, although this treatment didn’t extend her life.

This is called lead time bias. The National Cancer Institute puts it this way: “This increase in survival time makes it seem as though screened patients are living longer when that may not be happening... It could be that the only reason the survival time appears to be longer is that the date of diagnosis is earlier for the screened patients. But the screened patients may die at the same time they would have without the screening test.“  

So where does this leave us? Well, Dr. Deanna Attai, a breast surgeon in Burbank, CA had this to say on her Facebook page: “We need better tools - currently mammograms are a bit "one size fits none.” She continues: “Hopefully studies like these will promote more research. We need to identify who will actually benefit from mammography, and we predict which patients do not need screening. We are definitely moving towards more personalized care - we're just not there yet.”

Some links:
Too Many Mammograms
Overdiagnosis and Overtreatment of Breast Cancer

The Accounting

I am counting up the tally

Of the past few weeks

Three deaths

Three women

Three moms

All too young

Two of cancer

They each had some time

To get used to the idea

Of life without them in it

One in a car accident

There was no "getting used to it"

It happened in an instant

What about my little family of three?

What would happen if I wasn't here?

Who would clean the dust?

Who would cook the food?

Who would hold it all together?

My family can last for a week alone, but how would they do if it was forever?

Three women have died

Two cancers, one accident

Three men are now widowers

Five children no longer have mothers

Numbers don’t really help

Except to get it straight in my mind

It really happened

Numbers don’t lie, after all