The Cost of Chemotherapy

“Privately we may wonder if the despair and depression following a cancer diagnosis will dissipate soon, and so we wait for it to go away instead of telling anyone about it. We may just accept it as part and parcel of the disease and so it becomes a part of who we are. ”

(http://timetoconsiderthelilies.wordpress.com/2012/05/16/an-altered-state/)

For me, it was not the diagnosis nor the treatment nor the fear of recurrence that sent me spiraling into depression but the long term and permanent effects of chemotherapy, effects I was not adequately warned about.

The worst bit about it was that it wasn’t *my* depression, per se – but what I refer to as ‘biochemical fuckery’. Chemotherapy caused premature, sudden, permanent and severe menopause (similar to having an oophorectomy, my body was no longer able to produce any hormones to speak of); this sudden lack of hormones then caused a host of physical and mental problems that I did not know to expect, including crushing fatigue and depression.

Not having been warned about this made it that much harder to cope with, or even to recognize for what it was at first, and being advised to seek counseling or take anti-depressants for what was – to me – clearly a physical problem causing systemic cascade failures… o, that was insult to injury.

I’m not doubting that many people find dealing with cancer diagnosis and treatment depressing – I’ve been on blind dates that were more fun, myself – but I would question how much of the depression commonly seen after treatment is a result of internal processes (as it were) rather than a direct or secondary purely biochemical result of treatment. Even when there are legitimate reasons for depression or anxiety – and I would wager cancer diagnosis and treatment counts – I can’t help but think that they are not infrequently worsened or deepened by the aftereffects of treatment, and that we would all be well served by having these effects acknowledged. It is, at least for me, much easier to deal with biochemical depression when you *know* it’s not about you.

I knew my depression was not a result of my fear of recurrence, nor my scarred breast, nor my no longer being in active treatment – I was quite happy to put the ‘slash, poison, and burn’ year of my life behind me. It wasn’t the persistent lymphedema in my left arm, nor the entrapped nerves, nor the chemo hair re-growth (sparser, salt & pepper, and not my ‘normal’ texture) that had me contemplating suicide on a more than daily basis – I wasn’t happy about any of that, I’m still not, but I can cope.

It took me far longer than it should have to realize the root cause of my depression, and far longer than I would have wished to be treated for it. That could have been easily avoided had the doctors acknowledged and informed me about this possibility from the start of treatment, and if they had been willing to recognize that my depression was a direct result of treatment and treat me accordingly.

My belief is that there is a tendency to discount and/or minimize the impact of treatment (specifically of chemotherapy) both before and after care – and, quite possibly, the belief that if women are informed of this side effect as a possibility, they will then manifest the symptoms (you *know* how suggestible we women are!). Or the belief that likely effects of treatment will discourage women from pursuing the “best” course of treatment, the course of treatment most likely to  lead to disease free survival (no matter the cost to quality of life).

This does us all a great disservice.

It assumes that patients aren’t to be entrusted with their own informed decisions about their own lives; that reducing the risk of recurrence trumps quality of life issues, and that the doctor is more capable of determining what  factors are important in maintaining quality of life for a patient than the patient themselves.

For me, choosing chemotherapy was an utter mistake, and the impact on my quality of life close to disastrous.  It wasn’t the process itself, though that was wretched enough; it was the aftermath. And while I was warned about the immediate and direct effects of chemotherapy, all of which were transitory, I wasn’t informed about the permanent effects. In fact, when I brought up possible long term effects before treatment, my concerns were minimized or dismissed.

ERT (estrogen replacement therapy) has definitely eased the worst of these effects, but I’m left with relying on medication (and a doctor who will prescribe, harder than you might think to find) for my quality of life, something I’m not particularly happy about. I may have to take Effexor in order to continue receiving ERT – it’s something the doctor wants me to take, and she has made it a condition of prescribing ERT. So far I’ve avoided it, but I’ve an appointment coming up on the 12th and I’m sure it will be brought up again – and if it ends up being a condition of ERT, I don’t really have a choice but to take a medication I don’t want and, in my opinion, don’t need; a medication with its own host of ‘side’ effects.

These ugly trade-offs and compromises (and the neuropathy, and the impaired cognitive function, and the host of other lesser changes) have been-  and continue to be and will always be – part of the true cost of chemotherapy.

For me, the reduced risk wasn’t worth it.

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This entry was posted in breast cancer, cancer treatment, chemopause, cytoxan, recovery, Taxotere, Uncategorized. Bookmark the permalink.

5 Responses to The Cost of Chemotherapy

  1. Its tough and you are haging in there anyway, if I were in your shoes, I dont know if I would do chem either, I have seen what it can do to others as well. You’re right, for some reason doctors don’t seem to be too keen on full disclosure with patients. Its not fair. I really dont understand why. Its something I think about all the time. Feel better, and dont let your doctor bully you.

  2. dropjohn says:

    In all fairness to my oncologist, most people don’t have such a severe reaction – she couldn’t have anticipated that part of it. On the other hand, she could and did expect me to enter chemopause, and she failed to warn me of this beforehand – had she, I would have likely not opted for chemotherapy, because I know my body tends to have heightened reactions.

    Most women who have lumpectomys don’t have seromas, or cording, or lymphedema. Most women are able to work though the same chemotherapy regime I had with very minimal and transitory ‘side’ effects. So, I’m a bit of an outlier.

    On the other hand, persistent clinical depression & fatigue is common in breast cancer patients, especially among those who have undergone chemotherapy (about 50% of patients suffer these symptoms) and I do wonder how much of that is directly related to the long term effects of chemotherapy.

    Oncologists can be very focused on treating the *disease*, at times to the detriment of treating the *person*. Statistically, chemotherapy lowered my risk for recurrence… but the cost to my quality of life was, for me, unacceptable.

  3. Depending on your age and your own body’s pre-determined biological clock, chemopause may or may not be a permanent result of chemotherapy. My chemopause lasted 16 months. My cycles have resumed two years ago and are 21-28 days regular. The fatigue, however, is a chronic condition brought on by a variety of reasons, one of which is the development of anti-parietal antibody, preventing my body from Vit. B12 absorption in its oral forms (and this, only discovered after months of months of trying Rx forms of B12 pills!!). I was also discovered to be miserably Vitamin D deficient. Bringing my levels up to a point where I can function daily without naps or extreme exhaustion is a challenge. These are believed to be a result of the assault of chemo drugs on the digestive tract where nutrients are processed. Two endoscopies were required to remove strictures I had developed after chemo due to acid reflux scarring. I had two surgeries for MRSA infections that nearly killed me and am now left with unsightly scars from those. You are right. The after effects are not something doctors willingly divulge to patients and it is almost criminal to have to find out for ourselves.

  4. dropjohn says:

    Motherspreciousgems – I’m really sorry for your troubles; it’s a bugger all right.

    I was 47 when I went through chemotherapy, aside from the little matter of breast cancer, I was pretty healthy; with no symptoms of peri-menopause. Given my age, and the complete shutdown of all ovarian function, it’s highly unlikely that menopause *won’t* be permanent. It would have been better to know this going in; I could have made different choices – or even if I had made the same choices, they would have been *mine*.

    It’s hard to adjust to the loss, and feeling that I was ‘tricked’ into choosing chemotherapy makes it that much harder.

    May it get better for all of us… and soon, dammit!

  5. I completely agree that the long-term side effects of chemotherapy are under discussed for various reasons. Actually, I just posted on this myself. I’m sorry for all you’ve had to go through. Thanks for writing about this.

    http://nancyspoint.com/are-the-long-term-risks-of-chemotherapy-other-cancer-treatments-under-discussed/

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