Cancer Research UK main site

2 wk breast pathway, autistic, no info so what to expect?

octo
Offline

Hello folks,

I found something on New Year's Day.   But GP saw me on the 2nd, and straight to the referral, I had an NHS app notification the next day with a date and time (next week) and thought a letter of some kind would follow.  all so efficient.  But since then nothing:

No letter, no information, I don't even know which building, I only have which hospital (from the GP) and the date and time (from the App).

 I'm autistic.  I have an assistance dog normally to help me get around, but we've still got ongoing training with her for advanced skills, like remaining calm while I'm being poked around in a medical exam and given she's trained to be very sensitive to my emotions,  that runs counter to all her other training and is a really advanced skill.  Which means she isn't ready to accompany me for this.  So I'm going to be on my own, I know the site, but not even which building on that site, and I know the day and time and that its a 'one stop shop' but no idea if I'll be there all day?  The time given is first thing in the morning.

I'm guessing they have no understanding of autism, or I'd have had some info through about the sensory side of what the tests will be - and at this point I think I'm more dreading more that I'll overload at the hospital without my assistance dog to help me survive the noise of the waiting room than I am the possible results. This feels like a huge mess about to happen just to get access to the first step of whatever is to come.

Can anyone tell me about the kinds of scans run from a sensory point of view? Are they as loud as MRI? Is there a lot of vibration? Will there be lots of bright lights? Lots of pressure? Hot or cold?  Will I need to be poked and prodded a lot? Take my clothes off and wear a gown?

thanks

Oc

  • Offline

    In case anyone else in a similar situation is reading this, here is what I have been able to find out:

    - the appointment is likely to be a few hours, but not the whole day (wow that feels good to know that)

    - having a mamogram has been described to me like a cross between dancing and hugging a machine while naked above the waist.  I'm told that there are hand holds to keep yourself stable and the machine can tilt to help it get the right angle. There will be a lot of pressure (breast is pressed between two plates) but it's for a photograph so takes longer getting in and out of position that actually taking the image.  For those of us with larger chests, more positions and images are needed to get it all done.

    - that it is unlikely I'd have an MRI that day (this was the one I was dreading, because last MRI I overloaded badly between the vibration, the noise and the long time it takes).

    - that everything should be explained to me, with time for me to raise any concerns I have.

    - that I shouldn't have to wear a gown (my sensory sensitivities worsen with stress, and right now I can't wear a lot of my own normal clothes, in my comfiest, so the idea of putting on a who-knows-what-kind-of-material gown was not great)

    - There may be a biopsy, but it sounded like it would be done with a hollow needle, not a surgeon making an incision and then stitching it up after.

    It's all going to be a bit of a sensory nightmare, and I really want to get through it all without ending up overloading and having to do it all again, so I think I'll try to get some time off work the day before so I can bring my background sensory levels down or at least stop them rising further, giving me more scope for handling it.  Lights that normally are fine all sounds like horrible buzzing right now, so I know my background levels are abnormally high... to be expected with the stress of this, but I don't want that to become a barrier to accessing the scans.

  • Offline in reply to octo

    Hi octo, 

    Sorry to read you've been referred to the breast clinic and you're also concerned about the sensory impact. 

    From what you've described in your second post, it sounds as though you'll be prepared for the investigations. The points I'd add are:

    Hospital car parks/ public transport can be busy first thing - leave plenty of time for your journey to not overwhelm yourself. 

    One-stop appointments may vary between hospitals/regions/ how many people are booked in, so it'd be worth you bringing something to distract yourself with, book/music/fidget toys etc., for the waits in between investigations, or ask to go for a walk in the hospital grounds and have someone call you 10 mins before your appointment if possible if this helps you regulate better. 

    The mammogram is uncomfortable, but not generally considered painful. The nurse will be touching you/ moving you (e.g. top half forward but your hips to the side etc), and placing your arms on the machine and your breasts in the plates to get the best imaging and this can be quite annoying, however, it's over quite quickly. The mammogram machine clamps your breast for approx three - five seconds, then releases. Try to stay still as you'll have to do it again if you move and the image is blurry. Only your top half will be exposed during this time and you can usually put your own clothes on afterward, not a gown (again this may vary by hospital).

    Yes- very unlikely an MRI would be completed on the day. Aside from ear cancelling headphones or earplugs (not sure if you can bring your own due to metal risk), I think your own coping strategies would need to be prepared- sometimes they can talk to you through the speakers and let you know how long you have left etc to better manage your anxiety too. 

    You can request to keep your clothes on instead of a gown if this will reduce your stress. From memory I don't think gowns are used for one-stop investigations as you're in and out of different rooms a few times. I used to wear a strappy vest top which I would fold down at the last minute over my hips in front of the mammogram machine, or just before biopsy, and pull up straight after mammogram etc., so it doesn't really feel that you're topless. Then I'd put a hoodie over and be out the room quickly.  

    If you need a biopsy- yes they're usually done with a needle. You'll be given local anaesthetic and be told what to expect. The biopsy needle makes a clicking noise (can feel a bit loud) like a stapler, and you only feel a quick bit of pressure from this. To help clot the blood afterwards, sometimes the nurse/healthcare assistant needs to place both hands over the biopsy for a few minutes with firm pressure. It might be helpful to have your coping strategies ready if needed/ tell them to let you know how long left etc. as this can be a bit uncomfortable if you don't like people near you. Sometimes healthcare assistants supporting the clinicians try and calm you by holding onto your hand/talking to you throughout. If you are not comfortable with this, do let them know that this wouldn't be the best option for you.  

    Before the biopsy you'd have an ultrasound. This includes having a bit of gel placed on your breast, and the clinician will run the ultrasound wand over your breast and armpit to check the imaging. The gel can be cold, and the lights are turned off for the clinician to see the screen. From memory, the whole ultrasound/biopsy was over in 15 minutes, and the mammogram over in about 10. A humming sound from the mammogram machine movement can be heard, but it's over quickly. Without a top on the room can be slightly chilly, but not freezing cold. There's always lots of machines around so if you're sensitive to noise, you may hear background buzzing from somewhere (again, use earplugs etc where possible). 

    With all your stress I think taking time to try and relax before the appointment would be useful. Also, if you explain that you are autistic, and let the staff team know that having the appointments quickly without long waits in between would be very helpful to reduce sensory overload etc., they may be able to accommodate this for you. If you haven't already done so, you can complete and download a hospital passport from the National Autistic Society website and give this to reception at the breast clinic on arrival and request that staff treating you have a quick read of your sensory and communication needs so you don't have to explain it yourself and become overwhelmed. If you don't like waiting rooms, you can stand outside in the corridor if possible (listen out for your name to be called or tell reception you'd prefer to wait outside, and someone collect you when it's your turn)-  this happens a lot so they'll be used to it. 

    Everything is designed to get you in and out pretty quickly and they know everyone is very anxious for these appointments, but let them know about your needs to help you cope better. Think about your journey home afterward and reducing your stress (travelling alone/going for a walk etc). 

    Wishing you all the best for good results. 

  • Offline in reply to Trainee

    thank you so much, that's really comprehensive.

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.