On the subject of mastectomy v breast conservation, it was the 60s in the USA and UK up to the early 70s here when the docs didn’t give you a choice. I didn’t have a choice either as I’d already had breast cancer plus radiotherapy in my left breast where I had quadrantectomy in 2003, so that’s why I had a mastectomy and reconstruction this time. But they did offer me a diep surgery which I was surprised by at my age of 67 years. I am being treated at a breast cancer centre of excellence and it’s not all bad. I still feel they talk down to us senior citizens. I was rather offended when I had a fit and got carted off to the Haven in Hastings. They were terrific but then referred me to Silverline for ongoing support. It’s the charity started by Esther Rantzen for lonely older people. Admittedly my hair is getting rather grey and I am 67 but I like to kid myself I am not worthy of a telephone helpline for the more mature…Seagulls
My dentist was called [moderator note: name removed] and he was very ratty. I don’t think any children had anaesthetic injections in those days. It was drill away and get on with it, pain or not. So I too ended up with dental phobia. It was only when I got to university and went to see my GP that I was prescribed tranquillisers to go. I told my friends and they teased me relentlessly and told me every horrendous story about going to the dentist they knew. The result was - cure! I now tell the dentist I am scared and put my hand up if I am in pain so they will stop.
It sounds like you’ve been unlucky with your health professionals. I’ve almost entirely met with kindness and support, particularly when it came to chemotherapy when there was a real risk that my lifelong phobias would lead me to reject the treatment. The senior breast care nurse made two appointments for me, one to show me round the chemo suite in the evening when it wasn’t busy and I could talk to oncology staff (or they talked to me!) and another at peak time so I could observe clinic and treatment suites and get a real sense of the busy-ness. When I heard her say to the nurse shadowing her “This is a real phobia, not to be dismissed as normal fear” I knew I was in safe hands. A couple of lorazepam from the head oncologist, a private room off the suite in case I did have a panic attack, nurses who’d been prepped about me and my quirks - and I sailed through it. Thanks to them. Not once did anyone say “You’ll be fine” - they listened and took what I said seriously.
I think nowadays the emphasis is on conserving the breast. Certainly that was my first option and my surgeon’s recommendation, before my diagnosis got worse, and worse again till I wanted the whole thing gone. Yet my mother had breast cancer the year the first specialist breast cancer units were opened in London and Guildford - early ‘70s? - and the emphasis was on conserving both breasts (she had small lumpectomies on each breast). She got it again in the early ‘90s, a different type. Again, a lumpectomy was her choice.
It may be that I’ve been ‘lucky’ to be treated in a specialist centre, an RCE, so bad practice is less likely to be experienced. Staff have respected the fact that I didn’t want to know much detail, just get on with it, but now, with secondary BC, they recognise that I need to know more, I want to make informed choices. I’m given options, I’m given as much time as is safe with MTNBC - so different from the 5 yo slapped round the legs by the school dental nurse for refusing to come out of the toilet when I needed a tooth extracted!! Scarred for life! In fact, my oncologist is definitely trying (subtly) to steer me away from the next treatment because he thinks it will be too harsh a regimen for me, not mislead me into a treatment he’s chosen.
As for the form signing, it’s still the same. It has to be since they have no real idea of what they will discover and whether they can secure clear margins until they have opened up the breast. Surely that’s explained before you sign away your boob? I’ve been in this game for 4 years now and I’ve never been kept in the dark, except by choice. I’m no longer the passive patient I needed to be during primary treatment - but both approaches have been respected.
Have I been lucky? My only gripe would be that, despite clearly being high risk, I wasn’t alerted to more of the signs of secondary breast cancer, just told to “look out for lumps and bumps along your scar area”. No mention of the head or neck. That was the advice of the main female oncologist, dismissive, impatient and definitely avoided.
Different areas, different experiences? I’m now moving into the world of Gynaecology where I will react as a child and probably be treated as one too. But I’m able to speak out if I feel that’s happening. Wish me luck!!
“I have had some testy exchanges with my surgeon, who doesn't appreciate my asking the easier questions eg about scarring, and I really know what you mean about being treated like a grown-up. I haven't been spoken to like that since I left primary school!”
That is what I read just now. I am the same. I want to be treated as an adult but it’s like there’s a view of us as having to be told on a need to know basis. And that it’s far too complicated for us ladies to understand.
I was first diagnosed with breast cancer in 2003. Some things haven’t changed. I am not a lady. I was shocked that the surgeons were by and large male. The nurses were all female. A male who wanted to be a midwife claimed sex discrimination, his claim was upheld, but he still got nothing for it. I asked to see a male counsellor. That was seen as really weird but I got one. I had no idea he would be reporting back to the surgeon and oncologist on why I wasn’t cooperating. I only found out recently when I got my medical notes from 2003 which took five months to arrive after my request went in. Better late than never.
Yes I am still an adult. And they still would prefer us to do what we’re told. In the old days they would make you sign a declaration to agree to have a mastectomy before they put you under anaesthetic. They would then test the lump for cancer and perform surgery there and then. I think that was because they knew women didn’t want to have mastectomies. Then women in the USA rebelled and they started doing breast conservation surgery and radiotherapy for small tumours in outer quadrants. So it was worth making a fuss.
What I am trying to say is they think we won’t take the treatment if we are fully informed and they think they are helping us by keeping us in the dark. Well that’s the most charitable way I can think of it…