Thursday, April 12, 2012

A window into my mind right now....

BRITTA'S BODY, Plaintiff
TAMOXIFEN, Defendent

The Honorable Britta, Judge

Counsel Present:
Britta1, for Plaintiff
Britta2, for Defendent

Opening Argument, Britta1:
The side effects and risks of Tamoxifen are not worth the benefits of it.  After 22 months of taking Tamoxifen daily, it's time for me to stop.  
Tamoxifen is causing bloating and hot flashes, and increases my menstrual bleeding, which has caused both an abnormally thick endometrium and the need for an endometrial biopsy, and rather significant anemia.  After oral iron supplementation failed, my primary care doctor recommended I have a three-hour iron infusion, three times.  I had a severe adverse reaction to the first one, with a rash all over my legs, and incredibly painful swelling in my feet, toes, ankles, knees, fingers, and hands, which landed me in the ER when I should have been in trapeze class.  This also caused me to miss a day of work and thus lose money.  The swelling and pain lasted for 2.5 days.  
As for the thickened uterine lining, an endometrial biopsy is recommended, which can be an incredibly painful procedure for a small percentage of women.  Some women whose stories I have read online have reported that the pain was the greatest pain they have ever felt, worse than childbirth, and some women either fainted or vomited.  Because this only happens to a small percentage of women, the standard is for the procedure to be performed NOT in an OR or with sedation, but just in the clinic the same way a pap smear would be, with maybe an Advil or an Ativan.  I have a low pain tolerance and also a very low tolerance for enduring any more of these anxiety-producing procedures and would flat out refuse to have this done unless I could be sedated in the OR.  
The problem with Tamoxifen is that it leads to one problem after another, and the treatments for those problems often just lead to more problems.  It takes a lot of time, energy, and money to keep going to all of these medical appointments, some of which cause me pain, some of which cause me to lose time at work, and all of which cause me stress.  Exercise and stress reduction are extremely important for reducing one's risk of a breast cancer recurrence, but the medical problems and appointments that the Tamoxifen causes inhibits my ability to exercise and increases my stress levels.  
Because my oncologist and surgeon strongly recommended Tamoxifen for me, I have diligently taken it for almost two years, but that's enough for me.  My risk of recurrence was low to begin with, and undoubtedly even lower than the recurrence risk calculators said, because of the fact that A) my tumor was the mucinous type, which is so rare there are hardly any studies, but the existing data agrees that it's a highly favorable prognosis; and B) I am not your average, mainstream American, and I take very good care of myself, consciously eating many anti-cancer foods and taking many anti-cancer supplements daily.  
It is unacceptable to me that despite the fact that breast cancer has been researched for years and years and is so in the spotlight that we're all gagging on pink ribbons, still the "best" treatment is itself a carcinogen.  Studies have shown that the longer one takes Tamoxifen, the higher one's risk of uterine cancer grows.  It is only logical that the best thing a cancer survivor can do to take care of her health is to strengthen and nourish her body and avoid as many carcinogens as possible, given the fact that all humans are unknowingly and involuntarily exposed to numerous environmental carcinogens on a daily basis.
Until now, my Tamoxifen has been free/covered entirely by my health insurance, but now that my work hours (and pay) have increased, I am forced to switch health insurance plans and will now have to pay $55 per month for Tamoxifen.  Instead of paying $55 for a drug that negatively affects my quality of life, and is a known carcinogen, and might not even be necessary for me, it would be much more beneficial to spend that money on truly nourishing things.  For example, $55 a month would get me about 180 ounces of cruciferous vegetables, about an hour and a half of trapeze, a stress-relieving massage, 3/4 of a month's membership at the YMCA, or an item of SPF 50 clothing, all of which would reduce my risk of cancer and not have any nasty side effects.
There are many good reasons to stop taking Tamoxifen, and few good reasons to continue on it.
Opening Argument, Britta2:
Tamoxifen is one of the oldest, most well-studied cancer drugs, and the data clearly establishes that the benefits are well worth the minimal risks and the temporary side effects.  As frustrating as the side effects may be, they are temporary, and highly unlikely to be life threatening.  A recurrence of breast cancer would be much worse than temporary Tamoxifen side effects.  Anyone who is bothered by annoying hot flashes and biopsy pain that goes away in a few days should be grateful that those are the problems they are dealing with, as opposed to chemotherapy for liver metastases.  It is crucial to maintain perspective.  
Studies show that while the side effects end very quickly after Tamoxifen has been discontinued, the benefits of the Tamoxifen (decreased risk of breast cancer) last for many years beyond the 5-year course of treatment.  Putting up with some discomfort during the course of treatment is worth it for the increased likelihood that I will live a long, healthy life.  Twenty-two months of Tamoxifen, instead of five years, would not give enough protection.
My tumor was the "favorable" kind, yes, but cancer is also a nasty beast that eats the rule book for breakfast and is impossible to really predict.  I also had over three centimeters of DCIS.  It may have been the kind that never would have become invasive cancer, but it is impossible to tell, and until doctors are able to determine which DCIS will lead to invasive cancer and which won't, some women will end up being overtreated and that is the way it must be.  While the DCIS was removed with surgery, my atypical ductal hyperplasia was still present after surgery was completed.  ADH is a pre-cursor to DCIS, and very responsive to Tamoxifen.   
When it is impossible to predict or be certain about one's risk for recurrence, it's important to do everything possible to reduce the risk.  My tumor was highly estrogen receptor-positive, which means it is the kind that responds the best to Tamoxifen.  I'm grateful that an effective treatment for me exists!  There are many women with other types of breast cancers who would not benefit at all from Tamoxifen and have no other options, and I hear them say how they feel like they are just lost and adrift, with no treatment other than hoping and praying that the cancer doesn't come back.
No one should go off of a life-saving drug because of the cost.  There is financial aid available and help is always there if I reach out, and I can still put my money towards other nourishing things such as trapeze and cruciferous vegetables.  My risk of uterine cancer from Tamoxifen is much, much lower than my risk of a breast cancer recurrence would be if I quit Tamoxifen.  
The bottom line: I would rather deal with uncomfortable-but-not-life-threatening-or-permanent problems like heavy periods and occasional biopsies than a life-threatening cancer recurrence that would require many painful procedures and poisons.  In this case, Tamoxifen is clearly the lesser of the two evils.
Court will now recess.  Following the recess, Britta1 will take the stand.

Sunday, April 1, 2012


I have HAD it with Tamoxifen.

Tamoxifen has made my periods go crazy.  I bled for 3 weeks straight, and then became anemic.

A month and a half of oral iron supplementation, along with eating iron-rich foods, did nothing to raise my iron levels.

So, I needed iron infusions.  Before the procedure started on Thursday, I had a bad feeling - I asked a nurse, does anyone ever have an allergic reaction this?  I wanted reassurance that it was safe.  She told me no, she doesn't think so.  Unsatisfied, I asked a second nurse the same question.  No, she said, she's never seen anyone have an allergic reaction.  So I settled into the chair for the 3 hours while an iron sucrose solution dripped into my vein, but I kept the cord with the call button on it very close to me.  I was relieved when I made it through the 3 hours without any problems.

I went home, and when I went to sit down on the couch, my knees almost buckled.  The pain was incredible.  Thinking my knees were just stiff from having not moved for 3 hours, I tried to "walk it off"... that only made the pain spread to my ankles.  I was getting increasingly agitated, because trapeze class started in about 30 minutes, so I had to find a way to get rid of the pain.  Despite the fact that now my whole legs hurt so much I could hardly get up and down the stairs, I stubbornly got undressed to put on my trapeze clothes... only to discover that my knees, ankles, feet, and toes were so swollen it was like someone had filled my legs with a garden hose.  Then I started getting hives on my legs - it was like dozens of mosquito bites all over me.  I called the hospital, and they told me to go to the ER.  I hung up with angry tears, wanting so badly to be at trapeze class instead.

A brought me to the ER, where the receptionist person went to put a hospital bracelet on me, saw that I already had one, and then just put the new one on top of the old one. 

A and I spent the next 2.5 hours in the ED and the pain and swelling spread to my fingers and hands.  Benadryl took care of the hives, but apparently there was nothing to do about the pain and swelling other than take ibuprofen and wait 3-4 days for it to pass.  I sat there in the hospital bed, in a hospital gown, wearing my TWO hospital bracelets, wondering what the trapeze class was doing at that very moment and feeling so pathetic.

Why was I there in the hospital, hobbling around like an 85-year-old, with knees that felt like softballs?  Why was I not climbing the trapeze ropes instead?  Why did I get hit with the "rare but severe" side effect that only affects less than 1 in 1,000 people?

I couldn't go to work on Friday, and spent the whole day either on the couch or in the bathtub.  My legs and feet are better now, but my hands are still sore, to the point where I shouldn't be typing... but writing is how I cope, and dammit, I have to write.  But now I should go put arnica on my hands, and have another anti-inflammatory dose.

F*cking Tamoxifen.  I'm contemplating quitting.