Wednesday, 2 December 2009

Go Ahead, Make My Day

“My question is this,” my tone is defiant, “if I don’t have cancer, why do I need to take Tamoxifen?”

At this moment Mr Hadjiminas has the demeanour of a man who has gone to ground. Holed up behind his desk. Hunkered down with ball point pen, flak jacket and helmet.

But I think I’ve got a fair point.

For some time now I have been agonising with this decision – whether or not to take Tamoxifen. Tamoxifen is a drug that is prescribed for those, like me, whose tumour is found to be oestrogen receptive. My oncologist, Suzy Cleator, strongly recommends Tamoxifen for me. She says that, after surgery, it is the second most important treatment for the type of cancer that I have had.

So why do I hesitate? Well, here are the possible side-effects of Tamoxifen: early menopause; nausea; hot flashes; weight gain; hair thinning; loss of libido; thin skin; vaginal dryness; skin rashes; strokes and deep vein thromboses; dementia; blindness and, most worryingly, endometrial cancer and cancer in the other breast of a more aggressive type.

And why do I need it at all? The cancer has been removed, first by surgery, then any lurking cell anywhere in my body poisoned by chemotherapy. Finally any tiny bit of tumour that thinks about rearing its head is currently being nuked with radiation therapy. Answer: I think that the reason is that, um, if the cancer were to come back and it is oestrogen receptive then this Tamoxifen will ensure that it doesn’t have any oestrogen to feed and grow upon. But if that is the case, why is breast cancer so much more common amongst women who have passed the menopause and are no longer producing as much oestrogen? Answer: I don’t know. And how common is it for the cancer to recur within five years, if one has already had surgery, chemo and radiotherapy? Answer: I don’t know. What happens if the cancer comes back after five years? Answer: I don’t know. How common are the various side effects? Answer: I don’t know. What are the survival rates after ten years for women having taken Tamoxifen along with chemo and radio as opposed to those therapies alone? Answer: I don’t know.

“Maybe it’s a belt and braces approach? Like an insurance policy,” suggests Nick. It sounds so simple – just take it, to be on the safe side.

It seems that I have a lot more questions to ask. But I don’t know who to ask them of. My oncologist Suzy Cleator has gone off and had a baby (congratulations to her!). My other oncologist Carmel Coulter has gone off on holiday.

So here I am bearing down on Mr Hadjiminas again, giving him both barrels of my panic and anxiety. I’ve brought Tessa with me for moral support. Poor old Mr H only has Honoria on his team. She is about eight-and-three-quarter months pregnant and can barely stand up.

“The thing is this,” explains Mr H, “If we had a big scanner we could put Lily in and say “there’s not one speck of cancer remaining in her body” then we certainly would never give you any Tamoxifen. But we cannot be sure that the chemotherapy got every single cell of cancer in your body.” He continues, “statistically after ten years we find that out of a hundred women similar to Lily, who have had surgery and chemotherapy, twenty-five will relapse. So in retrospect, we see that there must have been some cancer cells left behind in them.” I nod. Tessa grabs a pen and takes notes. “But with Tamoxifen for five years we might find that only eighteen women relapse.”

“So, um, that’s seven percent fewer?” I ask, calculating in my head. “Yes,” agrees Mr H, “I think it’s a significant difference.” “But if I’ve endured five years of hot flashes and itching skin, had a stroke, gone blind in one eye and got cancer of the uterus, I might not want to be alive,” I retort, with an air of empty triumph.

Mr Hadjiminas steeples his fingers. “The risk of cancer of the uterus is increased but it is still very small compared to the risk of recurrence of your breast cancer. And we would monitor you all the time so if you did develop it we would pick it up straight away.” “Yes, but I would still have the cancer,” I reply. “That’s true,” says Mr H, “but it is 100% curable.” I don’t want to ask him what the cure involves. “The risk of stroke in a woman your age is about one in a thousand. That would be doubled to two in a thousand. The same goes for blindness. The risk increases by 50% so it would go from maybe two in a thousand to three in a thousand. Macular degeneration is an old person’s disease. It’s unlikely to affect you.”

“Is there anything else you’re worried about?” interjects Honoria, “the early menopause perhaps? Some women worry that they will suddenly start to look old.” “Well yes,” I wail, “I don’t want to be old. I don’t want to look all wrinkled and fat.” “But you won’t” says Mr Hadjiminas. “But I’ve read that Tamoxifen thins your skin and so you start getting wrinkles.” “Where is the evidence?” cries Mr H. Did someone take a piece of skin from a woman taking Tamoxifen and compare it with another woman’s skin? No!” I love Mr H’s enthusiasm for his work. “Some women come back after taking Tamoxifen for five years and complain that they look older. I tell them - well you are five years older,” he concludes.

“What about this ER-alpha S118-P? I read that Tamoxifen is effective in people who have high levels of that but not in people with lower levels?” At this point I’m shooting in the dark because I left the article that referred to this on the dining table at home. I have no idea what ER-alpha S118-P is. “Where did you read that?” asks Mr H. “Science Daily,” I hesitate, “I think. Can you test for that?” “Yes, we can do a test,” he replies, “but the studies are not certain. And if you found you had a low level, would you decide not to take the Tamoxifen?” “Oh I don’t know,” I reply wearily, “if I had a high level, I might decide in favour of taking the Tamoxifen.”

By now my head is spinning and I don’t think I can absorb any more Tamoxifen information. I ask Mr Hadjiminas to have a look at my back. It has filled up with fluid again. It’s painful but more than that I find it very distressing. Mr H says that if it hasn’t settled down by next week he will give me a steroid injection. I don’t even ask him what the side effects of that might be.

I change my mind about Tamoxifen twenty times a day. I talk about it all the time, to everyone. It spills over into my thoughts and dreams. On the one hand is the undeniable cool logic of Mr Hadjiminas’s approach: try it and see. On the other hand is my deep and instinctive terror of this drug. The jury is still out.

Daisy arrives for our singing lesson. Afterwards I feel relaxed and revived. She asks me how I am and I tell her about my dilemma. I run through the arguments for and against. I give her all the angles. “It comes down to this,” Daisy states flatly, “do you feel lucky?”


Stephanie said...

I have a similar thought process every time I take Tamoxifen and every time I go for Herceptin (I had a HER2+ oestrogen+ tumour removed just over a year ago).
I want to say 2 things.
1: I've been taking tamoxifen since March and although I haven't had a period since, and have had the occasional hot flush, I haven't noticed any other symptoms.
2: Like you I'm quite sure the cancer has gone from my body, so I do think the Tamoxifen and Herceptin is pointless.... so I see it as humouring the medical profession and reassuring my friends and family rather than having any effect on my body.

I know it's a wretched decision, though, Happy to talk about it - please email me via my blog or dm @bahtocancer on twitter if you are there.

Be well x