Stories of Cancer
Giving Voice to Real Experiences

To chemo or not to chemo?

I start feeling sick before we even get to the cancer hospital for the first consultation with the oncologist. Dr Macdonald sweeps into the room, his white coat flapping round his waist, cracking jokes. He has a huge scab on his head. I want to ask if it’s a melanoma (now I’m seeing cancer everywhere, it’s probably just an accident) but resist and try to concentrate on what he’s saying. He seems to be doing that plumber’s thing (“oh dear what has the previous guy done”), asking if I was offered a mastectomy. (I wasn’t). I’m not sure if he’s hinting that I wouldn’t have needed chemo if I’d had one. I let go of these thoughts and question him about what sort of chemo he’s recommending and why, asking how much it will increase my chances of survival (“by about 5%”) and if he would recommend it if it was his wife. He has no doubt that he would. We talk about the idea of a “cold cap” I can wear to stop the chemo getting to the hair follicles which might stop hair loss. I ask about how sick I will be and he is bullish “have you seen anyone being sick here?[no, but they might be when they get home, anyway I know I’m in the pre-consultation unit not in the treatment area].

Terry and I come home with lots of information and decisions to make, with not much time to make it in. I know I’m still not over the surgery and want more recovery time but Dr Mac’s in a hurry and says if we leave it too long there’s no point. No pressure there then. I phone and write emails to friends, getting lots of support, and call all the help lines, visit all the websites. Make a quick exit from one chat room where a woman is writing about being sick each time she sees the colour red, the colour of one of the drugs they want to give me. I decide I don’t want to hear too much about the horrors of chemo, or I definitely won’t be able to do it. I think I’ve more or less decided I will do it, 5% is small but not insignificant, and I’m not sure if I could live with myself if I didn’t do it and then suffered a recurrence. But I still want feedback from others.

My main support person at this time (in terms of someone who’s been there) is Jill. Jill lives in British Columbia and we’ve never met. She’s a friend of my cousin. We email each other frequently. She’s brilliant, having been through everything I went through only a few months previously. She had the same chemo as Dr Mac is suggesting I have, and says if she can handle it anyone can. She’s a great resource for me. But I still want to talk to other people who’ve been there, to meet them face to face, to make connections and get advice, to help me decide whether to go for chemo or not. I speak to a couple of women on the phone, friends of friends, but both of them had grade one tumours and surgery had been their sole treatment. I needed some chemo expertise, I wanted to hear other people’s stories, and I wanted some professional input.

The Bristol Cancer Help Centre (now the Penny Brohn Centre) and Breast Cancer Care help lines are both brilliant. I feel well counselled by them. Both let me talk, neither of them hold a view either way about what I should do, and Breast Cancer Care plug me in to their peer support scheme which puts me in touch with a lovely woman, one of their volunteers, who phones me regularly throughout my treatment.

Apart from Jill and my peer support person, I lean heavily on my friends and family. By now my email list has about 50 people on it and I pour my heart out to them, hoping that by writing about it I will get clearer, and hoping that they will be able to help me make these decisions (see below). Dare I risk not having chemo at all? I’d always imagined myself as someone who would say no, knowing how sick it can make people, choosing an alternative path of meditation and herbs, but now its facing me I’m not so sure. Do I want to have chemo with an ice block on my head to stop me losing my hair; will that work or will it just make the whole experience more horrible?

Subject: news from today’s meeting
Date: 25 January 2005
Hi all
We’ve been to meet the oncologist today. He had a lot to tell us and it was hard to take it all in, both the amount of info but also what he was saying wasn’t easy to hear either.
I need to hold on to the fact that my tumour is / was early stage and that there was no lymph node involvement. However:
– it was grade 3 and therefore the risk of spread is greater, so some systemic (whole body) treatment is advisable, either chemo or hormone therapy or both
– radiotherapy is strongly advised anyway, ‘no negotiation on that one’
– the tumour tested negative for progesterone and only 30% receptive for oestrogen, so hormones are less of an issue than they sometimes are in breast cancer (not good news), meaning that hormone therapy will probably still be on the cards but can’t be the only treatment. If it had been 100% receptive I might only be given hormone treatment and radiotherapy.
This all points to chemotherapy being advisable which is what we expected but its not being as strongly advised as it might have been had it been more advanced or found in the lymph nodes. I / we do have some choice. He estimates it will improve the chances of no recurrence by about 5%. We asked him if it was his wife what would he say. He said he would advise going for the treatment. 5% is not insignificant especially if I was one of the 20% for whom it was going to recur. He also wants to get started straight away and at present we’re booked in for 8th Feb. Ohmigod…. this is all happening so fast, hardly feel I’m over surgery and here we go into the next thing. Every 3 weeks for the next 6 months. Then radiotherapy after that then hormone therapy as well.
I think I’m going to go for it and that it would be foolish to say no but I’ve got a week to think about it, so feedback / your thoughts are welcome……… Not much more to say right now, will email again soon as it all starts to sink in but I know lots of you are waiting for this news so I’ll get this sent off now.
Thank you so much for all your love and support and flowers and visits and phone calls
Love you all

My friends, my family, my extended family respond fantastically, acknowledging what a hard decision this is, giving me their opinions (most say do the chemo, get rid of any lurking concerns) and reassuring me that I’ll be fine. Not for the first time I’m so grateful for such love and intelligent support flowing my way.

Who needs support groups anyway? As well as all the emails I’m in frequent telephone contact with mum and dad, sisters and close friends. My neighbours stop me on the street to ask how I’m doing and to offer help.  I count my blessings and feel very lucky to be surrounded by people who love me. Terry has been a rock, keeping the house clean and full of food, me with my feet up in my designer pyjamas (that was money well spent, they got a lot of wear!) The house is still full of flowers and cards, and I’m on prayer and meditation lists all over the world. Can’t imagine what it would be like doing this on your own, and yet there must be hundreds of people who do go it alone. I decide that I’m going to do the chemo thing though I’m filled with trepidation at the thought of it.