To have found my first mammogram really upsetting?

[YompingJo]

Got a letter through with very basic details if an appointment. Turned up and found the whole thing demeaning. Tiny room, intimidating machine taking up most of it. The radiologist was monosyllabic and bossy and manhandled me into the right position including grabbing each breast and shoving it into position, pushing other bits of my body out of the way, not once asking first. I know it's a necessary procedure, but a bit of sensitivity would have gone a long way, and having the respect to ask for consent before grabbing a breast is a basic consideration. I'm autistic and needed to know much more what to expect beforehand. The letter gave a way to request assistance in the case of SEN, but I don't consider myself to have SEN and didn't know what I'd need until I was right there, so that wasn't any help. There was a QR code for feedback, which I gave but I just feel... invaded and demeaned. AIBU?

I don't think I could cope with it either. It sounds barbaric. I don't care if people think I'm being precious either. I just can't put myself through something that I know will haunt me afterwards.

I've got anxiety just thinking about it.

A mastectomy- as one doctor pointed out to me- would be more barbaric and cause even more anxiety.

I have had many mammos thanks to dense breasts, in this country and others, and no matter how nice the radiologist has been, I still feel like a cow at milking. Will take that over the alternative though.

The problem is that if you do get breast cancer, you're going to have to undergo far more breast handling.

I've had multiple mammograms, and, though I know different women feel different levels of pain, I can honestly say that none were painful. Uncomfortable yes, but not painful.

When yours is due, I suggest that you contact the service and explain your very real anxiety about it. They might well take steps to help you manage it.

I'd hate to think that this thread might lead to women getting advanced breast cancer through avoidance of the screening.

Scans are not compulsory. You can just go through the rest of your life worrying if you've got cancer. It's your decision. I've had several and they caused minor discomfort, but as an adult I accepted it was worth it.

Sorry you had such an uncommunicative/insensitive Radiographer on your first ever mammogram, I would imagine she would have known it was your first one from any notes she had, so should have shown a bit more care.

Personally, I've only had 1 mammogram about 10 years ago and didn't bother with the 2nd one offered to me as i found the first one so uncomfortable and unpleasant, though I didnt have any complaint about the manner of the Radiographer, just didnt enjoy my boobs being clamped into a vice. I know i should get over it really, but I just couldn't be bothered with the whole thing. The same applies to smear tests - had my fill of those too! Can't help thinking if men had to undergo such unpleasant/painful procedures they would manage to invent a better system for these tests 😣 I don't recommend other women follow my lead though, i think i am just particularly sensitive to being prodded and poked.

I'm not bothered about pain. I've got quite a high pain threshold, really. It's being treated like I'm not a human being that makes me freeze up.

Unfortunately, other medical professionals have already caused me so much trauma that I find it beyond challenging to engage with this kind of thing. Anything where I feel like I might be treated badly or lose my dignity causes me so much anxiety that I genuinely can't bring myself to go through with it. It's not logical - I already know X or Y would be worse. I still can't make myself go through it. It's like trying to step out onto a ledge at a great height. My brain can't cope with the threat of danger.

Honestly, even talking about this is making my heart rate go up. I'll just have to take the risk that avoiding this stuff won't work out badly for me.

And honestly, it's not the OP that puts me off. I find it reassuring that I'm not the only one who struggles. It's all the people insisting that the OP should suck it up and that it's fine to be treated like that, some of whom have admitted they're medical professionals. That attitude terrifies me.

My sister is currently receiving treatment for cervical cancer and it's brutal with horrendous side effects. So please continue with your smear tests.

Yeah, i received another cervical smear appt invite the other day and my husband spotted the envelope and is nagging me to ring up and organise it, but i must admit i am loathe to do so, despite all the horror stories of cancer you hear about. I havent chucked the letter out, just building up mentally to booking it.

When I went the lady explained everything before I started and told me what she would do as she went along. It was still not a nice experience but the best it could be with someone who was kind and helpful.
Its such a shame you didn't get someone like that.

When I went for the first time the "Receptionist" was absolutely lovely. She explained everything and was really helpful, happy to answer questions etc However, the person doing the scan was very abrupt and never smiled or said hello or anything. She did tell me where to stand and told me that she was going to move me into position etc before she touched me. The only saving grace was that it was over in a few minutes. It was late in the day on a Friday and I just assumed she'd had a hard week and was ready to go home.

Its the Church of the NHS Its to be worshipped

Are you the poster who had pain for months afterwards. I remember it from another thread.

From reading most of the posts on this thread, it appears the majority would prefer to be told about the procedure and what was going to happen and when, and there are a few who don't need that.

I have yet to have my first mammogram as I had an operation the week I was booked in, but I have had many smears and internal examinations over the years. During all but one I was spoken to about what they needed to do before I half stripped off, given a cover whilst I was on the bed, and then again when lying on the examination table.

The one where I wasn't spoken to or not even offered a sheet to cover me whilst I lay there waiting for her to gather the equipment is the one that has stuck on my mind the most and nearly stopped me from having one again. It was partly that experience plus her inability to refer me to gynae that resulted in me putting in a complaint to the practise manager. The GP is no longer there, and I suspect she was like that to everyone. How you treat your patients really does impact on how their treatment goes.

Going back to the mammogram, I have tried to look up what actually happens, but have only found things where it says it's uncomfortable due to the area they need to get a good picture of. I thought it was a flat, upright plate that you had your boob squished against.

My dh had a mammogram several years ago due to some lumps he had. Turned out to be nothing sinister, but he said he was told about everything that was going to happen during the scans.

Treated like dogs? Treated as less than human?

It's patients like this that ruin it for everyone else. How is anyone supposed to take anything you say seriously, when you say things like this?

I don’t know why you’re responding in reference to minor discomfort. I can suck up even quite extreme physical pain. It’s having my bare breast groped that is impossible for me, due to flashbacks of severe SA, as I explained previously. This being done by a stranger who was terse and didn’t even communicate what she was about to do is actually making me upset to just imagine. So it’s not a “decision” for me - additional worry about breast cancer/not catching it early if I develop it will be yet another impact of my abuse. I suspect many survivors are impacted similarly, just as we often are with smears, giving birth and other intimate medical situations.

OP I looked up the NHS guidance on mammograms as I am clearly previously uninformed. One of the things stated is:

”Breast screening is often uncomfortable and sometimes painful for some people.
You can talk to the mammographer, who is trained to help you feel more comfortable and give you support. You can also ask to stop at any time.”

“Before starting, the mammographer will check your details with you and ask if you have had any breast problems.
They will also explain what will happen during the screening and answer any questions you have.”

So all those stating that mammographers don’t need to take the time to explain what they’ll be doing are demonstrably wrong. As are those who claim that women should put up and shut up once they’re there - questions are encouraged and we can say no at any time. (But I understand that communicating a no, or asking a question would potentially be harder for OP who is autistic.)

https://www.nhs.uk/conditions/breast-screening-mammogram/what-happens-at-your-breast-screening-appointment/

But this is exactly the point - you cannot, when you conduct a medical procedure on someone, assume that they know the ins and outs of the procedure (and are therefore giving their informed consent) without actually checking that.

You can send them leaflets in advance (as some, but not all, NHS trusts do), or links to websites. But you cannot assume that they know what will happen without checking. "Have you read the leaflets? Are you aware I will need to physically move your breast into position? I'm just going to lift your breast up so we get a good image, is that okay?"

"Thanks for coming for your smear test. I'll need you to take off your trousers and then I will use a speculum so that I can swab your cervix. Is that okay or would you like someone to chaperone you?"

"You're down for a gall bladder removal. I'm going to talk you through the risks, the potential outcomes etc." Then for those we actually get in writing that they gave consent.

When I go for a mammogram I'm not expecting cookies. I do expect the person performing that mammogram to treat me with the basic amount of pleasantness while I'm standing there wondering if this is the year my left breast decides to have a go at killing me. And the consultant who phoned me regarding my feedback agreed with me 100%.

You can always assess your risk and refuse to go. ( I expect this will cause a bit of a fuss) If you take that step, you will need to be very careful to examine yourself properly and regularly. Liz O'Riordan has an excellent video demonstrating how to do it, which is as a surgeon does it. Liz is a surgeon who had breast cancer herself and she knows a thing or two.

Makd sure also you know what symptoms to look for. There's lots of good information on nhs websites.

Don't forget either that if you have worries, you can refer yourself to the service at any time.

They should have talked you through what was going to happen, and checked you were OK with everything. The radiographer I had was brilliant, I was surprised she explained so much. Both members of staff were also warm and friendly. I think you just got unlucky, OP.

I'm sorry you feel you weren't treated respectfully but to be fair it is an uncomfortable but necessary procedure we just have to endure.
Yes it's a small room and a huge machine, and yes our boobs have to be manhandled, repositioned and squished between the plates. So all of this is completely normal.
You do come across very intelligent so I'm a little confused as to why you didn't research what to expect as this is what most people would do when going for any kind of hospital appointment or procedure they hadn't had before.
It could've prevented a negative experience for you and a complaint from you.

I've just had my first one and was very nervous beforehand.
I watched a load of YouTube videos so I knew exactly what to expect and the procedure was identical
The nurse was very reassuring and told me what was happening every step of the way, but it definitely helped me to be aware of what was going to happen before I arrived.
I'm sorry your experience wasn't a positive one.

Have you had a mammogram. How the hell do you expect the procedure to take place? I for one can't make my breasts move through the power of thought alone. If you can that is some superpower you have.

it may well be a better experience next time but it’s never going to be pleasant. It may however save your life.

The staff have to make sure all of your breast is fully x-rayed, it's not fun but very necessary.