Hospital Anxiety

When I discovered my lump, the first thing I did before contacting my surgery was to get on the internet and search for information. The information is out there if one takes the time to look for it, and I know that every so often there are daytime TV chat shows that will attempt to educate people on such things. 

I think part of the problem is that when it comes to health matters, it's impossible to retain all the information we read or hear about unless one is fortunate enough to have the memory of an elephant. 

During that breast clinic appointment, I had also been told that it's fairly common for women heading toward the peri-menopause stage of their life (which I was) to experience issues with their breasts, but that it generally tends to settle down once they're the other side of it (post-menopausal).

In addition, large breast cysts (the size and shape of mine felt a bit like a fun-size Mars Bar) carry a greater chance of returning.

Anyway, thought I'd include this link to a web page, which provides information on the topic of breast cysts:

https://breastcancernow.org/information-support/have-i-got-breast-cancer/breast-lumps-other-benign-conditions/breast-cysts

We could definitely do a lot better at informing people about this stuff. Like you see breast cancer awareness stuff, but how often is it accompanied by actually useful information on what kind of lumps you're looking for or whatever?

Maybe it is and it just passed me by, but when I felt a lump there I had no idea whether a cancer lump would be bigger or smaller or harder or mobile/immobile. In my case my GP said they were pretty sure it was a cyst and didn't think there was a need to check further.

But you’ll go because IF u do have cancer you’re going to find out anyway one way or another. Not too mention it getting worse the longer u wait. If u don’t, it will be immense relief when u find out. 

When I was in the med field, I would run into a patient with similar feelings. For the most part CT’s are painless. So I’d explain that. For the really freaked out I would just be blunt and tell them straight out that there is a time to be brave and this is it. I don’t remember that failing. What I didn’t say (as it wasn’t my place) is your life could depend on it. 

It was explained to me at the time that it's not uncommon for women (and non-binary people assigned female at birth) to feel a lump in their breasts, and then find it has completely disappeared a day or so later because it's a harmless cyst that has gone away of its own accord. Considering that I'm a woman, I have to confess that I felt somewhat ashamed of myself for previously being unaware of that.

Anyway, yes. At the time it had felt like an ordeal. As the cyst hadn't felt like an immovable solid lump and had been causing me a considerable amount of pain, I felt fairly confident that it was a cyst, but this did not stop me from feeling anxious and thinking, "What if it's not?"

Whilst I hadn't anticipated requiring a mammogram before the age of 50, I suppose it's given me the advantage of knowing what to expect in the future. 

Cancer destroyed many families. Apparently, my Granddad had cancer; but my Gran said that it was diabetes. She was in denial.

Wow! That's an ordeal.

Bless you, I know that feeling.  I hope the staff are aware you are autistic and know how to handle that.  A health passport might help.  Also brief the BF as to how to negotiate with staff if the worst happens.

Good luck

Dear Kitty,

Thank you for sharing this with our community.

Here's our page about anxiety, which might be of your interest, https://www.autism.org.uk/advice-and-guidance/topics/mental-health/anxiety?gclid=Cj0KCQjwmtGjBhDhARIsAEqfDEfJbnnyKlatKs9J0ngHTGQVFMq35FR74PZPYQwPp2uhrVv5xhaysoEaAgD4EALw_wcB

I hope this helps! All the best to your hospital appointment!

Best wishes,

Eunice Mod

I ended up being referred for a mammogram several years ago when I was in my late 30s/early 40s after discovering a lump. My GP was fairly certain it was a harmless cyst, but it obviously needed to be checked out, just in case it wasn't. As I had never had a mammogram previously, I had nothing to compare that experience with.

The mammogram wasn't pleasant, and there were a few occasions when I had to make a conscientious effort to stop myself from swearing. Although I understood that the mammographer was only doing her job, having my breasts individually squeezed between two pieces of plastic wasn't exactly fun, especially as they had been feeling rather tender anyway. To her credit though, the mammographer was lovely and did her best to put me at ease.

After the mammogram, I remember that I was then required to have an ultrasound. This confirmed that I had a number of cysts in both breasts, just that one of the cysts was considerably larger than the others. The next part of the process was to drain the large cyst and send a sample of the fluid that had been drained to the lab. 

I am similar to you in that I also try to avoid hospitals and doctors, so can relate to the anxiety you're experiencing. I know that trying not to feel anxious is easier said than done, but my advice is to try to push the appointment to the back of your mind and do whatever you can to distract your thoughts.

That is scary. It happened to me too many years ago. I had to have a biopsy and a lumpectomy but it was benign. Horrible experience though, and no idea I was autistic back then to know what help I might have needed. I did have some treatment for needle phobia (which didn't help much but at least they tried) and had to have a sedative. I had my Mum with me but I was still getting panicky. I would have been better if I could have waited somewhere less medical until they needed me, but they had everyone go in to the beds regardless of what order they were being done. I hope it is better for you. It wasn't terrible, but not nice at all. Maybe plan some treats for yourself as a reward for getting through each stage?