24 MARCH 2010
This morning I had an appointment at the breast cancer clinic in Windsor to remove my dressing and to find out the tissue results from surgery, two weeks ago. The results would determine whether I would need further surgery and whether my cancer is likely to have spread.
Here is some background based on my memory of what I have been told.
When a tumour is removed, the surrounding tissue (the margins) is also removed. If the margins are cancer-free, it means that all of the tumour was removed in the first attempt. If the margins aren’t clear, more is removed in a second operation.
In addition, breast cancer can spread via the lymphatic system, via ducts and nodes. People have about 20 lymph nodes in the armpit and some of those specifically drain the breast.
As I understand it, a lymph node is a site where your body battles infections. In a losing battle against cancer, the lymph nodes will themselves become infected and cancer cells can then spread around the body. ‘Secondaries’ is the term for your original cancer turning up somewhere else. If I’ve understood right, it’s much harder for secondaries to develop.
I found out only last week that breast cancer is different to liver cancer, for example. And liver cancer is different to skin cancer. Each cancer is different depending on where it first develops. Cancer could be detected in the bones, for example, but tests could show that it isn’t bone cancer, but breast cancer which has travelled. Imagine, it’s possible to find the secondary without locating the primary cancer!
So, on the day of my surgery, I was injected with a radioactive and a blue dye to locate the relevant lymph nodes, specifically the leading (sentinel) nodes, the first in the flow. The removed lymph nodes are also sent to the lab for testing. If cancer is found in them, more are removed with another operation.
I found out today that they removed three lymph nodes.
Hope or no hope
Up until yesterday, I allowed myself to feel hopeful about the results. But I’d also been prepared from the outset that I’d have follow-up surgery; it seemed too much to hope that all of the cancer would be removed at the first attempt. That said, I wondered how I’d feel if that would be the case and whether I could organise a party for Saturday.
But yesterday evening, I started to feel less hopeful. The worst news would have been that all of the removed lymph nodes were infected, which I would take to mean that the cancer was likely to turn up somewhere else. I couldn’t bear thinking about living with that kind of fear every day. I chastised myself for thinking negatively, as if I could jinx my results. I then chastised myself for being superstitious.
I watch the TV game show Deal or No Deal and there’s a strange attitude about hope: that, after choosing which box to open next, one can “hope” that it has a low money amount in it.
But the box contents don’t magically move from box to box based on anyone’s hope; the amounts and boxes are randomly allocated before the game begins.
No amount of negative or positive thinking can change which box contains which amount during the game.
Similarly, before my surgery, I could meaningfully hope that it would go well but, two weeks later, my hopes and fears can’t change the outcome; the surgery has happened and the results are already in.
Worry or no worry
In correspondence following the announcement of my diagnosis, some people assumed that I have been very worried, distraught, upset and tearful. In fact, I have been none of these. I don’t know why – I would never have predicted it – but it seemed to me that worrying wasn’t going to change anything and so I didn’t bother worrying.
Deliberate worrying wouldn’t have changed the outcome. The only effect it would have had is to fill my head with worry. Interestingly – and also unpredictably – I haven’t done any research or reading online of my condition or therapies. I figured that if I needed to know anything, someone at the clinic would tell me. (I have also assumed that I will be given very few – or no – decisions to make regarding my treatment.) The more unsifted information I had, the more fuel it would be for the fire of worry-world.
I had been given a useful booklet after my first clinic appointment that was published by the Breast Cancer Care charity. I noticed they had a web site and discussion forums. I registered and read a few posts and then started a thread on when and how to tell friends and family of a diagnosis.
One gets addicted to these things as soon as people start responding and so I was soon looking for new posts and replies several times a day.
Women and some family were there from all stages; some just diagnosed, some undergoing therapy, some with secondaries, some with terminal cancer and a mother whose daughter had just died of cancer.
Poking around, I found a thread called “What not to say” (we don’t like to be described as ‘brave’) and one intriguingly titled “What to pack in your chemo-bag”. This was a collated list of items to have in a small basket with you at home while undergoing therapy.
To chew on?
I found myself reading about the gruesome effects of chemotherapy that some people experience. I found it very disturbing and wish I hadn’t read it. I was very quickly going off the idea of chemo.
A good friend pointed out at dinner a few days later that a self-help forum is used by people in distress or in need for help (of course, there are a great many people there offering support).
People who have had good experiences, no questions or no problems won’t use a self-help forum. One therefore gets a very skewed picture. So, the next day, I stopped reading the forum. After my surgery, I returned to post a link to my post-surgery blog post, to add a positive experience.
After having leafed through an entire Hello! magazine, I was called in to see the surgeon. We shook hands. Frank was with me.
Miss P, the surgeon, asked to examine me in the small adjoining room. I was joined by three women (surgeon, breast care nurse and nurse) as I took my top clothes off. This was the first time I’d not been left alone to undress. I said that I’d had no ill-effects from the anaesthetic and no pain at all the first week.
My dressing was removed and wounds inspected (“healing nicely”). The swelling (seroma) was much larger – the surgeon said that it would go away eventually and was part of the healing process.
The tumour was 3cm and (still) classified as grade 2 invasive ductal type. They also found “associated intermediate-grade DCIS (ductal carcinoma in situ) within the tumour itself”.
The margins were clear – no sign of cancer: all of the tumour had been removed.
The three related lymph nodes that had been removed are also clear. This breast cancer will not have spread by the lymph system.
I do not have to return for more surgery.
“What good news,” I said.
When I was first told that my lump looked suspicious and when I got my cancer diagnosis, I was too surprised to look at Frank. But this time I made a point to look at him and grin.
I asked the surgeon, “would it be true to say that I did have cancer but that I don’t have cancer now?”
“Yes,” answered the surgeon.
However, to stop the growth and spread of anything left behind, I will have chemotherapy (8 sessions, 3 weeks apart) and radiotherapy.
The hormone receptor test showed that my tumour was sensitive to (stimulated by) both oestrogen and progesterone and so I will also have hormone therapy (Tamoxifen).
The HER2 results aren’t back yet (a protein on the surface of cancer cells that attach to human epidermal growth factor, another protein). If the HER2 levels are high on the tumour, I could also have targeted therapy using Herceptin.
I was given an appointment with the oncologist for the following week.
I again thanked the surgeon, this time profusely. She rifled through a pile of papers on her desk and handed me a form, saying that if there was anything I wanted to say, to please use it and she mumbled something about “anything to help fight cut-backs”. They don’t have forms for people to give praise – I’d been given a form to make a complaint!
The breast care nurse followed us out and asked if we had any questions. I was grinning and couldn’t think of anything and said so. I asked Frank if he had any questions. He didn’t. I told the nurse “I’m just grinning”. She walked us to the exit, patted my back and said “well done”.
Well done? :-) I still can’t think of a good response to that.
We drove to the town centre and I texted some friends and family and then tweeted a shorter version of the message.
I asked Frank to pinch me, to make sure that I wasn’t dreaming (I didn’t sleep well last night and so it was a distinct possibility!). Over the next two hours, I asked Frank to pinch me several more times.
It was cold and drizzling on the way into Windsor but a glorious, sunny Spring-like afternoon. We had lunch al fresco.
We then drove to the next town to buy Indian sweets from Royal Sweets but ended up doing a food shop instead, followed by a hot drink and doughnut from a Krispy Kreme diner.
I have knowingly had cancer for just 5 weeks.
I don’t have cancer any more.
(Sure, I am at a higher risk of developing cancer again but that is no surprise.)
When I wrote in my diagnosis announcement letter that I had a temporary condition called cancer, I hadn’t understood the significance of infected lymph nodes.
I feel a list coming on!
- 26-ish Jan – I found a lump
- 28 Jan – GP appointment
- 10 Feb – screenings (“lump looks suspicious”)
- 17 Feb – diagnosis (grade 2 invasive ductal breast cancer)
- 8 Mar – surgery (technically cancer-free)
- 24 Mar – results (knowingly cancer-free)
I have had quick and excellent care – all free – all on the NHS.
I know that everyone has different experiences of cancer but I hope that my experience dispels some of the fear you might have if you ever get a cancer diagnosis.
It doesn’t have to be all bad.
To increase your chances of a similarly good outcome if you are diagnosed with cancer, please regularly check your breasts (gals) and balls (guys). Ladies, there are other things to check for.
My mother called while I was writing this and asked what my lump had felt like, whether it was hard.
For me, it was a distinct area of firmer tissue in one breast only. It’s spongy, like flesh, rather than hard, like bone. Mine seemed large and obviously wasn’t meant to be there.
Breast cancer doesn’t hurt. If I hadn’t been checking for lumps every few months, I would only have noticed the tumour once it had grown big enough to see, or if I’d become symptomatic. I dread to think how advanced it would have been at that stage, or whether it would have even been treatable.
I fear that, if you wait until symptoms appear, it might be too late.