Mammogram next month

I had my first mammogram fairly recently and was very anxious beforehand. A friend of mine said it hurt a little and I was worried about that and also about taking off my top half clothing. However it was a pleasant enough experience, the staff put me at ease when I explained I was worried and it was all done quickly and didn’t hurt at all!  I do think we  are lucky for our nhs.

Deleted

Guilty of negligence!

I had your post in my mind because awareness of early signs of breast cancer and taking up the invitation to attend a mammogram appointment will be a life saver for some. 

I had an aggressive form of breast cancer about 19 years ago. I discovered a lump and made an appointment with my GP to get it checked. My GP red flagged me to the hospital, and I had a mammogram, scan and biopsy in the one day.

I was too young at the time to be offered routine mammograms, so I am fortunate that I discovered the lump in the first place, otherwise the routine mammogram would have been too late for me.

Mammograms aren’t usually offered routinely to women under 50 years because their breasts are denser and malignant areas are more difficult to spot.  

I had a mastectomy and lymph node clearance, a breast reconstruction, chemotherapy and other drug treatments. Thankfully, I have been in long term remission since my surgery, but I often think how different the outcome would have been if I hadn’t discovered the lump. I wouldn't have been writing this now. 

So my message is yes, do attend mammogram appointments when invited. But everyone, young and old, please examine your breasts weekly as that is important at any age. 

Breast Cancer Now charity has useful information about spotting signs and symptoms of breast cancer.

https://breastcancernow.org/about-breast-cancer/awareness/signs-and-symptoms-of-breast-cancer

I'm a bit sad that this threat has had so little interest as I'd hoped to raise some awareness and just generally discuss the subject

I have mine done in a trailer in a car park, its all very clean and modern. In someway I think it's nicer than going to a hosptial, it feel less clinical if you know what I mean?

I think how painful or uncomfortable it is depends on the density of the breast tissue, women who've not had children or who are pre-menopause will have denser breasts than those of us who are older or have had children and breast fed them.

I'm happy to have these tests, having heard from my step daughter in law about her experience of breast cancer whilst she was still in her mid thirties, it's not something I would wish to have. Although she's made a full recovery she did spend a year suffering from the effects of chemo and radiation threatments and her's was tiny when she found the lump. 

As I said before I think we're lucky to have all this testing for free and the treatment if anything is found, it cost my other daughter in laws mother 100k for treatment in India and most of it had to be paid upfront. She got very similar treament, to that on the NHS. My daughter in law has had a genetic test for breast cancer as every woman in her family has had it, she has one of the genes and is on enhanced monitoring and when she's had a baby will have an elective mastectomy and reconstruction. 

I was reading these NHS England experimental statistics concerning:

- 2016 to 2021 percentage of females aged 50 to 69 attending a mammogram with a learning disability versus without a learning disability, and

- 2020 to 2021 percentage of females aged 50 to 69 attending a mammogram with a learning disability and with Autism versus without a learning disability and with Autism.

https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2020-to-2021/breast-cancer-screening

The important message seems to be; that we, as an Autistic community; need to try to be the best advocates and supporters we can: to help all Autistic females aged 50 to 69 to have the opportunity to attend their mammogram screening wherever possible.

I have yet to find a good information source on such a support campaign, by the Autistic community in support of each other - to best serve the needs of all Autistic women.  

I have found a more general paper:

"Autism: making reasonable adjustments in healthcare"

- Haydon, Doherty and Davidson (2021), which explores:

"The accompanying article set out why it is important to identify autistic people and the negative consequences of not recognising or understanding autism, including more severe illness and premature death. This article sets out what clinicians can do to help reduce those negative consequences by making ‘reasonable adjustments’ in any healthcare service in which they work.":

https://www.magonlinelibrary.com/doi/full/10.12968/hmed.2021.0314

(It is not only females who may be referred by a GP for a mammogram screening.  However, my understanding is there is no automatic mammogram screening program (outside of females aged 50 to 69) in the NHS screening invitation program.  I cannot be more precise about these patient presentations - as far as I can tell; the NHS does not track the exact number of those patients who receive a mammogram outside of the female invitation program).

It would be helpful to try and find out the range of reasonable adjustments facilitated for Autistic females around the UK (and beyond) - with the intention of better enabling the missing Autistic women to attend their mammogram screening in future.

For instance, I have heard of one Hospital Trust where, if you are given an appointment at a mobile screening clinic (truck-style porta cabin trailer in a car park of an Hospital or local business) - their patients are allowed to contact the clinic team in advance of the scheduled appointment - to request an appointment in a main Hospital building clinic instead (where reasonable adjustments may be more achievable).

If you have a friend who would prefer information about mammogram screening in Easy Read format; Macmillan Cancer Support have a free Easy Read pdf which you can download - with the title: "Breast care and screening - easy read".  This is a healthcare booklet intended for patients.  However, the diagrams are obviously, by necessity, human natural biological in nature - therefore, I have opted not to include the link here.

Likewise, NHS England have published an online pdf called: "Breast cancer screening: an easy read guide" (it is also possible to request a version in an accessible format suitable for users of assisted technology).  For people for whom reading or the written word is a communication barrier; there is also a picture storyline with the title: "Beyond Words breast screening picture story" - which is intended to support a suggested storyline for family members, carers or health professionals to refer to.

There is a short video (about 11 and a half minutes duration) produced by NHS Screening with the title: "Do The Test – Go For It!" intended to support health professionals to watch with women who would benefit from an information video explanation.  From a co-production perspective; among the women video participants, this video also features women with learning disabilities encouraging others not to be scared of screening and to have the test if they want to.  The video is introduced as: "Taking the fear out of going for breast screening. A film by and for women with learning disabilities.". One of the women participating in the video agreed to be filmed during a mammogram being conducted (again, this, by necessity, involves a human biological video clip of a woman undergoing the screening with her top clothing removed as directed by the medical personnel conducting the screening).

I hope something among the above resources helps our community here; to have the necessary dialogue with one another and our loved ones / close friends to:  further enable our (predominantly, but not exclusively) females aged 50 to 69 to: better access their mammogram screening when they receive their NHS invitation to attend the screening program.

TheCatWoman said:

I know lots of women hate them

I'm not surprised so many hate them, my wife has had many painful experiences with the NHS staff in London who have been quite rough and have either bruised or caused small tears from over squishing her boobs in the scanner.

I'm glad that there have been significant advancements in 3D scanning technology that mean the old clamp-and-scan approach is becoming obsolete and with AI based analysis of the scans there is greater accuracy in detecting abnormalities.

I hope the NHS can afford the upgrades but with their budget looking as tight as it is, it looks like the painful approach is going to be about for many for a long time still.