To reconstruct or not? to be or to do?

A fellow BC sufferer/ survivor in a FB group asked if she was mad to have no reconstruction. Like me she's having/had a one side mastectomy. Like me she's opted for no recon. Like mine, her surgeon says she can change her mind later  "Did any of you do the same as me and then change your mind later?"

When I had my right mastectomy in March 2020, I reasoned it would be risky to have more surgery and it was for looks on, not for function. S. daughter #2 advised me that her daddy could manage me having only one boob!  

S. daughter #3 advised me that losing the boob meant I became an Amazonian woman (proverbially they thought they could fight better without the R one!).  

My tae kwon teacher admired my ability to get back to training within weeks. I could still kick, punch, block, squat, do sit-ups, press-ups, see, hear. Having had a boob job would mean I couldn’t do press-ups for months.

A year on, I’m ok with my looks. What I can do matters more than how I look. Looks make me feminine, but action makes me feminist.

PRIVATE AND CONFIDENTIAL

PRIVATE AND CONFIDENTIAL is how you get letters addressed to you from an NHS healthcare provider. The NHS provided me with healthcare in 2011 when I blogged my breast cancer in I like it in the glory hole. I had cutting (an operation), burning (radiotherapy) and just in case therapy (adjuvant aromatase inhibitor - drugs to stop oestrogen, just in case any oestrogen-positive cancer cells remain). About a year ago, I made "a uni-lateral decision" (quotes because that is what my NHS GP wrote to the consultant) to come off the aromatase inhibitors, becoming one of the 36% who stop taking the drug by four years. Last week, five years after the BC, I had a write-you-off (discharge) letter,

"Thank you for attending for your recent mammogram. I am pleased to inform you that your mamograms (breast x-rays) show no sign of breast cancer."

So that's it then.  No more annual mammograms. Well that might be it.  I do have calcifications and apparently calcifications can lead to BC.  We'll see. In the meantime, I shall continue confidently trusting a private GP.

Hyaluronic Acid

Wandering round the local health food shop the assistants, whom I know because I'm often in there, asked me how I was. I had a little moan about the side effects of the aromatase inhibitor drug I have to take and then commented that my skin was also losing its elasticity, which it would do anyway at my age, but seems to have lost more quickly recently. The assistant recommended hyaluronic acid. This sounds wonderful - an anti-aging drug. But being as it's expensive, I thought I'd go and do some research on it first.

Googling just for hyaluronic acid tends to tell you about what it is, how it might work and some of its side effects but it wasn't until I searched for 'hyaluronic acid' and 'breast cancer' together that I got the scariest warning. Don't take hyaluronic acid if you have any cancer, but particularly if you have breast cancer. Hyalonic acid (HA) is recommended for creaky bones as well as for ageing skin - it seems to rejuvenate. BUT its ability to counter-act the side effects of Arimedix may be because it supports/ encourages breast cancer. There appears to be correlation between high HA and breast cancer - though cause is not yet proven. So I repeat:  

Don't take hyaluronic acid if you have any cancer, but particularly if you have breast cancer.

Breast cancer women 'stop drugs'

** Breast cancer women 'stop drugs' **

"About a third of breast cancer patients stop taking medication because side-effects are more severe than they expect, researchers suggest"

says the BBC here.

I'm not surprised. Last time I saw a specialist doctor, he listened only to the first side effect that I mentioned, then he launched off into a spiel about the side-effects only being in the first three months, while I went through another side effect that minute. I watched him and thought perhaps after three months you just get so used to the side effects that you think them normal. But after reading this BBC article, I realise that you just don't bother telling the doctors because they aren't going to listen anyhow. If the doctors aren't going to listen, then you have to do your own thing to deal with the side-effects, and if that means stopping taking the drugs, then so be it.

I had an interesting email from Cancer Research UK about the causes of cancer that you can control, with a wonderful graphic that I recommend downloading and printing. In breast cancer, the fifth most important cause is inactivity, not something you might have accused me of. However, since I last saw that doctor, a new side effect has attacked me - creaky achy joints. I need supple joints so I can kick at tae kwon do, so a side effect that prevents me being active in order to prevent cancer is a very unhelpful side effect, to the point of being contradictory, and therefore the cause of the side effect should be avoided. The cause is the drugs so stop taking the drugs.

Cancer statistics

Did I have cancer? Am I a survivor because that routine mammogram in February found the tiniest lump, diagnosed it as cancer and I had local treatment (operation & radiotherapy), followed by systemic treatment (these nasty anti-hormone tablets). I reasoned that it was such a small lump that it wouldn't have been feel-able for at least a year, and then some. So with treatment at that stage I'd certainly have lived longer than five years from last February. Now I've had the diagnosis and the treatment, of course I'm told I'm likely to survive five years and the survival statistics would look good, but I would have survived those five years anyhow!

Now there's a debate about routine mammograms resulting in over-diagnosis, consequent over-treatment and survivor stories that encourage greater take-up of mammograms. Here's the original research from America, in the Archives of Internal Medicine. Note that the authors, Welch & Frankel conclude:
"Most women with screen-detected breast cancer have not had their life saved by screening. They are instead either diagnosed early (with no effect on their mortality) or overdiagnosed."

Perhaps I don't need to keep taking these horrid tablets. I shall certainly argue this point with the oncologist at the next meeting in January. Perhaps it would be reasonable to stay on them only until the next mammogram in March shows that there are no more lumps. Last time I saw an oncologist, he said that if new lumps appear, it tends to be within the year or eighteen months after initial diagnosis. So perhaps I can come off the tablets after a clear year to eighteen months, instead of staying on them for five years.

Radiotherapy

Seven treatments down, thirteen to go.

They told me the side effects would mean that I'd be tired and lethargic, but the tiredness is only because I'm driving so much. I'm out of bed half an hour earlier to get to work twenty miles away an hour earlier, eat my lunch at my desk, and then drive 44 miles to the hospital for the treatment, which is nearly always late. The lethargy is because you sit around lethargically waiting, fifteen, thirty, forty-five minutes until your machine is ready for you. It takes five minutes or more for the radiographers to position you exactly right, with the tattoos and their latest felt tip pens marks lined up with the green laser lines, and then two minutes for the treatment. Then I drive 20 miles home again, in the rush hour.

These radiographers work long and intensely without a break, from eight o'clock in the morning until 6.30 in the evening, hoping to reduce the waiting lists. In the mid-afternoon, there are more people to chat. The men agonise over how long they have to wait and just how full their bladders have to be before they have the therapy - they've got prostate cancer - and they have to have a full bladder and an empty bowel so that the full bladder pushes the bowel out of way of the radiation that would otherwise give nasty side effects.

Waiting, we read, chat, do suduku puzzles. I take a research paper to peruse. I'm making a lot of progress on my reading, and I drive home calmly, usually later than I'd hoped but in time for evening activities like tae kwo do.

Race for life

Daughter ran in the Race for Life - well she walked it actually, but still completed her five kilometres in less than an hour despite predicting she was going to take two hours. Well done her, and well done that she raised nearly all the money that she targeted.

Tattoos

I now sport three tattoos.

What?! Me have tattoos?

It's not a well-known side effect of treatment for cancer that you can get tattooed, but if the treatment is radiotherapy, then they have to measure you very carefully to be sure to aim the radiotherapy in the right place, and you have repeated doses of radiation day after day after day. So when they measure you, when they know just where to aim, they tattoo you so that they can use the tattoo marks to place you and to aim the radiation just right every day.

Another advantage of tattooing is that if years later you need to explain where you had the radiotherapy, the record is there on you in the tattoos, warning medical people that you've already had radiation to that spot.

I wonder what they do when they get patients in who are already so well tattooed that there's no room for a radiotherapy tattoo.

The tattoos are tiny - the size of a full stop on this page - my husband kindly tells me that one of mine looks like a blackhead. Thank you husband.

A good friend

What's a good friend? What can you talk to a friend about? It used to be that you couldn't at polite dinner parties discuss

• sex
• religion
• politics

But I think I've discussed all these with my best friends. I had some fantastic friends in the town where I lived for twenty years, and they helped me crystallise ideas on many aspects of life. One friend - a mother of four children - had her youngest son at the same time as I had my first born. She was so helpful and sensible on bringing up children, just being there doing it in front of me, advising if I asked.

Another friend wanted to talk about religion and gave me the opportunity to attend an Alpha course at our local Anglican church, something I'd have liked to have done through the Catholic church, but there wasn't the opportunity. I see Alpha courses are discussed on Mumsnet here.

And only good friends can talk to you when you've got cancer. Servan-Schreiber writes that the evidence is that women with good friends (girl friends, not husband) survive breast cancer better. And I know from the reaction of my women friends that they're supporting me. Aren't I lucky with my friends?

I like it in the glory hole

"I like it in the glory hole"

was the status I wrote in Facebook a few months ago. The women were playing a game that involved changing your status to something intriguing that didn't refer to the actual object. Last year's game referred to where you kept your handbag, but the statuses, like

"I like it hanging off the end of the bed"

of course had double entendres.

The year before we'd played a similar game where you had to change your status to what what colour your bra was: black, yellow with white stripes, pink spotted. The ostensible aim was to raise awareness of breast cancer.

I've got a lump.

I had a routine screening a couple of weeks ago, but got a recall. An hour ago I was diagnosed with a lump in my right breast - too small to feel and picked up on routine check 2 weeks ago. I am now x-rayed, ultra-sounded and biopsied. Am to go back for results of biopsy next week.

So I'll write this blog, but not publish it yet.