New, autistic and scared

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Pls be kind, this is all very new to me and frankly I’m petrified. I’m desperate to find other autistic womxn who are in or around their early 40s who can relate to this or similar (not that I know what similar looks like, I’m that new to this):

Small patch under nipple went from sore to uncomfortable to painful.

GP examined and found lump.

Hospital did mammogram, ultrasound and physical examination; found enlarged lymph nodes in armpit.

Biopsy showed cancerous cells.

Now going through more tests; MRI, CT and bone scan.

Won’t know results for another couple of weeks.

I’m scared. I don’t know what to do or what to think. I’ve been told breast cancer can come or show in more than one form.

I’m late diagnosed autistic, I’ve not found a support group specifically designed for autistic (or neuro divergent people in general) and the big C yet.

All I want to do is withdraw between tests. And the waiting is doing my head in: my patience jumped ship the moment the word cancerous was heard.

I was already trying to navigate burnout amid my other responsibilities - so I felt the weight of this news. The uncertainty of what’s to come is severely disrupting and impacting upon everything. I don’t have an autism support dog yet either.

Part of hating the wait is also being driven by the fear of whilst I wait, whatever it is, has the chance to spread. That’s not helpful at all. I’ve already got to the point that if it’s in the breast too, they can both go. Take whatever lymph nodes too.

If you are like me, pls respond.

  • Hi  

    I'm very sorry to read of your tests showing positive for cancerous cells. It must be very worrying for you. I noticed that you had not had any replies from other people with cancer and also autism. I hope you won't mind me replying to you, I am not autistic but have some experience of it. I have cancer but not breast cancer. If you would like to read my cancer history please click on my username. It is a good idea to write a profile yourself as it helps others in their replies to you and it saves you repeating yourself. Just click on your own username, then profile and save when you've written it. By responding to you, it will place your post back at the top where hopefully you will get more replies.

    https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer

    I have linked some information for you above. 

    https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/understanding-breast-cancer-in-women

    The link above is the Macmillan booklet for breast cancer. I know you are worried and anxious but it may help you to read information on the subject. I don't know your situation but you mention that you are feeling burnt out. When I was diagnosed with cancer, I attempted to continue my life as it was and wanted minimal disruption. I worked right up to my surgery date and wanted to be back without proper recovery time. When I look back, I wasn't taking care of myself and this impacted my health. If you can - stop some of the duties/responsibilities - recognise that you need to take some time out to care for yourself. Have a read of this community news article  If I could go back to the day of my cancer diagnosis 

    It may help you to talk to someone about how you are feeling. It may help you if you are feeling anxious and overwhelmed. The team at the Macmillan helpline are great and will support you. They will offer you advice and may signpost you to other help. This is the link to contact https://www.macmillan.org.uk/about-us/contact-us

    I hope the information I've linked, helps you and can ease your mind a little. Best regards.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Hi Lyta,

    I saw your message and wanted to reply.  I'm in my forties and was diagnosed in October...I remember only too well the horrendous wait between receiving the diagnosis and getting a treatment plan.  You will see others on this forum saying time and again that it is the worst part.

    I know you are interested in hearing from others who have autism.   I hope I will do, although I have chosen not to seek official diagnosis.  Instead, I have considered myself to have high-functioning autism for many years, one of my children has it too.  I've become quite the expert on the topic over the years and have no doubt I would be diagnosed, if I were to pursue this route. 

    It's a horrible life-altering moment when that 'C' word is first mentioned.  I remember feeling like I was floating above myself, like it wasn't really happening to me.

    Following diagnosis, I fought with my fears, just as you are now.  I reached out on here and on other forums and could see I was far from alone.  That helped.  If you haven't already, try posting in the main breast cancer forum too as your posts may reach a larger audience than here in the Under-50s section.

    At times, I found ways to cope and get on with life but sometimes living with uncertainty simply consumed me: The waiting, my health being in the hands of others, not feeling in control of my own world, the fears and the many 'what-ifs'.....

    Like you, once I knew I had breast cancer, all I wanted was for them to get rid of it.  As soon as possible!  But, inevitably there is a wait....  

    Since that time, I have had 2 surgeries, the 2nd being a mastectomy  -  which was my choice.  I learned (some way into the process) that, in order to gain some control back, I had to start advocating for myself and saying what I wanted and needed....Difficult for me as I'm not usually so assertive.

    Here are some of the things that helped me when I was where you are now:

    -Speaking to others on here (and other BC forums)....Made me feel less alone (even though no one had my exact diagnosis or treatment plan, as everyone is different....but, emotionally, we all seem to be in very similar places).

    -Speaking to Macmillan nurses/Breast Cancer Now nurses on the telephone.  It takes some guts to make that first call but, wow!  They are so supportive and so knowledgeable.  I can't begin to tell you how helpful I have found this service.

    -Talking to others...It's a personal choice who we share our diagnosis with...I shared my diagnosis with the people I needed around me for support.

    -A book I have (and treasure) called 'The Untethered Soul' by Michael A. Singer.  I just kept dipping in to sections of the book that had words that gave me strength at times when I felt I had none.   It's whatever works for you....Meditation helped me at times too...

    -When I wanted to cry and bury my head under the pillows, I did.  I didn't try to hold it all in or stuff it down deep inside.  I let it out.  It helped.

    -Distraction/compartmentalising also helped me at times.  For example, I'd talk to Macmillan or have a good cry and, afterwards, go and do something else: Work/clean/go out somewhere/lose myself in a TV programme, whatever I felt like.   The key here is that I couldn't have done this without letting it out first.

    I hope something here is helpful to you.  If you can, please be kind to yourself - You are dealing with so much at the moment and everyone on here knows that feeling.  Keep reaching out any time you need support and read some of the other posts too....You will find a lot you can relate to.  Grab every bit of support that comes your way.  Wishing you all the very best and also hoping you get some answers soon.  Once you know your treatment plan, things feel much more in control.  It's the waiting that tries to break us but you won't be waiting forever...