I have a 90% chance of being alive in ten years' time.
Is that good? I think it's excellent. But statistics are funny things, aren't they. As my wonderful GP agreed when we had another good long chat this week, you tell one patient that his chances are 70% and they go Oh how fantastic. You tell another patient with the same diagnosis exactly the same, and they break down in distress, Oh how terrible.
So I wasn't surprised when my husband and I sat in the cancer consultant's office for the very last time this week, and she responded to my "What are my chances" question with a "Do you really want to know?"
But she wasn't surprised that this particular patient said Yes I do. She had already turned to her computer screen to show me the systems they use to work out the answer to this kind of question. Clearly, she had pigeonholed me (accurately, I feel) as an intelligent, articulate patient who is able to negotiate the healthcare system. She said so herself.
This was in response to another question, about follow-up appointments.
There aren't any.
There used to be. Breast cancer patients used to be invited to return to the doctor's office every six months to begin with, then once a year. But the cancer team found that this could lead to patients not reporting in with worrying symptoms (new bone pains, say), because they would think, Well, I've seen the doctor two months ago and she said everything is fine, so I'll wait until I see her again in four months' time. Plus, apparently most new problems are not picked up at the routine appointments, but discovered by the patients themselves in-between appointments. Oh, and another thing: patients tend to get rather anxious about the follow-up checks.
So now they've started a new system called Open Access Follow-Up, where they don't call you in, but you contact them with any worrying symptoms.
The problem with this, said the consultant, is that some patients are easily put off if they are not immediately successful in getting an appointment. Others who are perhaps less clued in than I am might simply not turn up with their new aches or pains.
Interestingly, she added that patients tend to use the OAFU (yes, honestly, they use that acronym) in the months following the end of treatment, and then tail off. Perhaps they simply need to get over the shock of not being a full-time patient anymore, or the insecurity that comes with not having doctors and nurses peering at your blood results and prodding your surviving breast on a regular basis.
According to the OAFU leaflet (see, we're all learning to speak the jargon here), the breast care nurse will teach me what kind of symptoms warrant an immediate return visit to the clinic. I haven't heard from her yet, so we'll wait and see... she's been off sick with stress from too much work, so perhaps it's just as well that I already know what to look out for.
New nodules in my scar or neck or other breast, of course. But also signs that the cancer might have spread (for me as a breast cancer patient, that is most likely to be my bones, lungs, liver or brain): any persistent bone pains, shortness of breath, tiredness, weight loss or headaches, and I'll be on that phone. And if they don't give me an immediate appointment, I'll just nip down to the clinic from my office, preferably wearing my Staff Badge, and make a fuss.
What they did offer me are annual mammograms, but I'm trying to argue my way out of that one.
No point, as far as I can see. My particular cancer was not visible on a mammogram, not even on that day when I went along to have my lump checked. The consultant touched my breast with one finger and went Oh yes, there it is, I can feel it and sent me along to the mammogram room followed by the ultrasound room.
"I've looked at your mammogram and it looks absolutely fine!" smiled the ultrasound woman. She soon stopped smiling, because within seconds, there it was on the screen, an unsightly ragged-edged mass that clearly wasn't the cyst we were all expecting.
I had never heard of breast cancers that are invisible on a mammogram, but now I know there's even a word for it. Mammographically occult.
Definition of "Occult": having mystical, supernatural or magical powers, which I prefer to the medical definition: not accompanied by readily discernible signs or symptoms.
That's my cancer: one with magical powers, in possession of an invisibility cloak.
I've added mammographically occult to my vocabulary, which always catches doctors by surprise. Keen as I am to understand everything, I made Ultrasound Woman explain to me how it is possible to have an Occult Breast Cancer, and I now see how it happens (bit too convoluted to explain here, but it's to do with having very dense breast tissue. Too much information, perhaps?)
Consultants have been mumbling promises of an annual MRI scan instead.
Ah, the MRI scan. I've seen the pictures taken shortly after my diagnosis, when they wanted to check whether the cancer was limited to the lump or whether it had gone all dotty in the rest of the breast. No hiding under a magic invisibility cloak here: my lump lit up on the screen like a beacon.
Alas, although my consultant was happy to endorse my argument, it wasn't up to her to decide whether I qualify for such five star follow-up: it's the surgeons and the radiographers, apparently, who discuss this in their team meetings, and they are not always keen on it. (Why not? Too expensive? Not enough evidence that it's necessary? I didn't ask.)
So I've fixed an appointment with the surgeon in two months' time. (Not my own lovely surgeon, unfortunately, who has now left.) If she says No, I definitely will ask why not, and I will only be satisfied with fully argued and convincing medical explanations.
Apart from the annual mammogram or MRI scan, I have started a 10 year course of hormone treatment.
My cancer was spurred into growth by oestrogen, so I'm taking pills to stop that happening. Five years' worth of a drug called Letrozole, probably followed by five years' worth of Tamoxifen (although the consultant pointed out that the treatment plan may well have changed by then, what with new research coming out all the time).
I also need to take a daily bone strengthening tablet, to combat Letrozole's side effects. Despite my gloriously young bones. Better safe than sorry, I suppose.
My GP wrote "until 2020" on my repeat prescription. Blimey.
So, back to the statistics. "What are my chances of the cancer coming back?" I wanted to know.
And yes, I did want to know. I stressed the point by saying that I understand about statistics and their limitations. So many ifs and buts. In the end, they are just numbers - and, as my surgeon once helpfully pointed out: "It could just be your number."
The consultant spent some time explaining how the online "what's her chances" system works, what research it's based on, what the caveats are. The doctors use it to work out, for example, whether a course of chemotherapy is worth the bother. I won't bore you with it all, but if you're interested, I'm happy to talk it through over coffee, as I do find it all utterly fascinating.
So, here are the numbers. These are percentages of women still alive 10 years after the diagnosis. They don't look at recurrence rates (in how many women does the cancer come back?) for reasons that I'll also explain to you, if you like, over that coffee.
Looking at a lot of studies combined, of all women with my type of cancer (sized just under 2cm, spread to three lymph nodes) who had been treated with surgery but nothing else, roughly 80% were still alive 10 years later. About 17% had died of cancer, and 2% had died of something else. (Leaving, it seems to me, a mysterious 1% who are not alive, but they haven't died either. Told you. Tricky things, statistics.)
But of the women who had been treated with surgery and chemotherapy, 90% were still alive after 10 years.
So that'll be me.
My husband was surprised that the chemotherapy had added so little.
"All that effort! You'd think that it would have doubled your chances, at least."
That's another bit of evidence that everyone interprets statistics differently. (Which is why some people keep buying lottery tickets, but I would never bother. Unless it's a school raffle, where I once won first prize, an iPad mini, with a 50p ticket. What are the chances of that? Much, much lower than my chances of getting another bout of cancer in the next few years.)
From where I am sitting, it seems that the chemotherapy has doubled my chances. Instead of on in five women succumbing, it's now one in ten.
Which is not much worse than your chances, I may add. Because one in every eight women will get breast cancer at some point. (Perhaps my chances are even better than yours, because of the Letrozole and the annual scans?).
One in three people will get cancer. One in four people will die of it.
I know these statistics. I reel them off, sometimes, when giving talks. Cancer affects all of us. So being told that I have a one in ten chance of dying in the next decade doesn't worry me too much. As far as I can see, I've always had a one in ten chance of dying. (And the chance goes up, I suppose, as we get older. What were the chances of my elderly mother surviving for another ten years? There, see what I mean? The statistics probably include women in their 80s, but I think my chances are better than theirs.)
So unlike Ms C, who had a similar cancer to mine but didn't want to go back to her normal life because she was so terrified that the cancer would be back, I don't feel terrified at all. Yes, I know that it can come back. But if it does, then it's just bad luck, isn't it. I've done everything I can to prevent it happening. The surgery, the chemotherapy, the radiotherapy, the hormones. Now it's just a case of living life again, knowing that things can, and do, go wrong sometimes.
I suppose the difference with my pre-cancer life is that now, I really know that things can go wrong.
I knew it before, but only in my head. Now, I know it in my body and in my soul.
It's a useful thing to know, of course, but you can't let it ruin your life. Life is, after all, a terminal condition for all of us - but none the less enjoyable for it.
Is that good? I think it's excellent. But statistics are funny things, aren't they. As my wonderful GP agreed when we had another good long chat this week, you tell one patient that his chances are 70% and they go Oh how fantastic. You tell another patient with the same diagnosis exactly the same, and they break down in distress, Oh how terrible.
So I wasn't surprised when my husband and I sat in the cancer consultant's office for the very last time this week, and she responded to my "What are my chances" question with a "Do you really want to know?"
But she wasn't surprised that this particular patient said Yes I do. She had already turned to her computer screen to show me the systems they use to work out the answer to this kind of question. Clearly, she had pigeonholed me (accurately, I feel) as an intelligent, articulate patient who is able to negotiate the healthcare system. She said so herself.
This was in response to another question, about follow-up appointments.
There aren't any.
There used to be. Breast cancer patients used to be invited to return to the doctor's office every six months to begin with, then once a year. But the cancer team found that this could lead to patients not reporting in with worrying symptoms (new bone pains, say), because they would think, Well, I've seen the doctor two months ago and she said everything is fine, so I'll wait until I see her again in four months' time. Plus, apparently most new problems are not picked up at the routine appointments, but discovered by the patients themselves in-between appointments. Oh, and another thing: patients tend to get rather anxious about the follow-up checks.
So now they've started a new system called Open Access Follow-Up, where they don't call you in, but you contact them with any worrying symptoms.
The problem with this, said the consultant, is that some patients are easily put off if they are not immediately successful in getting an appointment. Others who are perhaps less clued in than I am might simply not turn up with their new aches or pains.
Interestingly, she added that patients tend to use the OAFU (yes, honestly, they use that acronym) in the months following the end of treatment, and then tail off. Perhaps they simply need to get over the shock of not being a full-time patient anymore, or the insecurity that comes with not having doctors and nurses peering at your blood results and prodding your surviving breast on a regular basis.
According to the OAFU leaflet (see, we're all learning to speak the jargon here), the breast care nurse will teach me what kind of symptoms warrant an immediate return visit to the clinic. I haven't heard from her yet, so we'll wait and see... she's been off sick with stress from too much work, so perhaps it's just as well that I already know what to look out for.
New nodules in my scar or neck or other breast, of course. But also signs that the cancer might have spread (for me as a breast cancer patient, that is most likely to be my bones, lungs, liver or brain): any persistent bone pains, shortness of breath, tiredness, weight loss or headaches, and I'll be on that phone. And if they don't give me an immediate appointment, I'll just nip down to the clinic from my office, preferably wearing my Staff Badge, and make a fuss.
What they did offer me are annual mammograms, but I'm trying to argue my way out of that one.
No point, as far as I can see. My particular cancer was not visible on a mammogram, not even on that day when I went along to have my lump checked. The consultant touched my breast with one finger and went Oh yes, there it is, I can feel it and sent me along to the mammogram room followed by the ultrasound room.
"I've looked at your mammogram and it looks absolutely fine!" smiled the ultrasound woman. She soon stopped smiling, because within seconds, there it was on the screen, an unsightly ragged-edged mass that clearly wasn't the cyst we were all expecting.
I had never heard of breast cancers that are invisible on a mammogram, but now I know there's even a word for it. Mammographically occult.
Definition of "Occult": having mystical, supernatural or magical powers, which I prefer to the medical definition: not accompanied by readily discernible signs or symptoms.
That's my cancer: one with magical powers, in possession of an invisibility cloak.
I've added mammographically occult to my vocabulary, which always catches doctors by surprise. Keen as I am to understand everything, I made Ultrasound Woman explain to me how it is possible to have an Occult Breast Cancer, and I now see how it happens (bit too convoluted to explain here, but it's to do with having very dense breast tissue. Too much information, perhaps?)
Consultants have been mumbling promises of an annual MRI scan instead.
Ah, the MRI scan. I've seen the pictures taken shortly after my diagnosis, when they wanted to check whether the cancer was limited to the lump or whether it had gone all dotty in the rest of the breast. No hiding under a magic invisibility cloak here: my lump lit up on the screen like a beacon.
Alas, although my consultant was happy to endorse my argument, it wasn't up to her to decide whether I qualify for such five star follow-up: it's the surgeons and the radiographers, apparently, who discuss this in their team meetings, and they are not always keen on it. (Why not? Too expensive? Not enough evidence that it's necessary? I didn't ask.)
So I've fixed an appointment with the surgeon in two months' time. (Not my own lovely surgeon, unfortunately, who has now left.) If she says No, I definitely will ask why not, and I will only be satisfied with fully argued and convincing medical explanations.
Apart from the annual mammogram or MRI scan, I have started a 10 year course of hormone treatment.
My cancer was spurred into growth by oestrogen, so I'm taking pills to stop that happening. Five years' worth of a drug called Letrozole, probably followed by five years' worth of Tamoxifen (although the consultant pointed out that the treatment plan may well have changed by then, what with new research coming out all the time).
I also need to take a daily bone strengthening tablet, to combat Letrozole's side effects. Despite my gloriously young bones. Better safe than sorry, I suppose.
My GP wrote "until 2020" on my repeat prescription. Blimey.
So, back to the statistics. "What are my chances of the cancer coming back?" I wanted to know.
And yes, I did want to know. I stressed the point by saying that I understand about statistics and their limitations. So many ifs and buts. In the end, they are just numbers - and, as my surgeon once helpfully pointed out: "It could just be your number."
The consultant spent some time explaining how the online "what's her chances" system works, what research it's based on, what the caveats are. The doctors use it to work out, for example, whether a course of chemotherapy is worth the bother. I won't bore you with it all, but if you're interested, I'm happy to talk it through over coffee, as I do find it all utterly fascinating.
So, here are the numbers. These are percentages of women still alive 10 years after the diagnosis. They don't look at recurrence rates (in how many women does the cancer come back?) for reasons that I'll also explain to you, if you like, over that coffee.
Looking at a lot of studies combined, of all women with my type of cancer (sized just under 2cm, spread to three lymph nodes) who had been treated with surgery but nothing else, roughly 80% were still alive 10 years later. About 17% had died of cancer, and 2% had died of something else. (Leaving, it seems to me, a mysterious 1% who are not alive, but they haven't died either. Told you. Tricky things, statistics.)
But of the women who had been treated with surgery and chemotherapy, 90% were still alive after 10 years.
So that'll be me.
My husband was surprised that the chemotherapy had added so little.
"All that effort! You'd think that it would have doubled your chances, at least."
That's another bit of evidence that everyone interprets statistics differently. (Which is why some people keep buying lottery tickets, but I would never bother. Unless it's a school raffle, where I once won first prize, an iPad mini, with a 50p ticket. What are the chances of that? Much, much lower than my chances of getting another bout of cancer in the next few years.)
From where I am sitting, it seems that the chemotherapy has doubled my chances. Instead of on in five women succumbing, it's now one in ten.
Which is not much worse than your chances, I may add. Because one in every eight women will get breast cancer at some point. (Perhaps my chances are even better than yours, because of the Letrozole and the annual scans?).
One in three people will get cancer. One in four people will die of it.
I know these statistics. I reel them off, sometimes, when giving talks. Cancer affects all of us. So being told that I have a one in ten chance of dying in the next decade doesn't worry me too much. As far as I can see, I've always had a one in ten chance of dying. (And the chance goes up, I suppose, as we get older. What were the chances of my elderly mother surviving for another ten years? There, see what I mean? The statistics probably include women in their 80s, but I think my chances are better than theirs.)
So unlike Ms C, who had a similar cancer to mine but didn't want to go back to her normal life because she was so terrified that the cancer would be back, I don't feel terrified at all. Yes, I know that it can come back. But if it does, then it's just bad luck, isn't it. I've done everything I can to prevent it happening. The surgery, the chemotherapy, the radiotherapy, the hormones. Now it's just a case of living life again, knowing that things can, and do, go wrong sometimes.
I suppose the difference with my pre-cancer life is that now, I really know that things can go wrong.
I knew it before, but only in my head. Now, I know it in my body and in my soul.
It's a useful thing to know, of course, but you can't let it ruin your life. Life is, after all, a terminal condition for all of us - but none the less enjoyable for it.
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