Feeling scared

hi

I saw your other post and flipped a coin to pick which one to answer.

I had several different types of breast cancer, one main area was DCIS which was very slow moving, I was missed in my first routine mammogram in 2012 and finally booked a private screening in May 2015 and the comparison was obvious, it went from about 5mm to 65mm in that time and everyone was really worried that it had spread but thankfully it hadn't. 

During the weeks waiting for surgery, since I was deemed non urgent because it was 'only' DCIS another lump popped up out of nowhere, literally one morning boom and it hurt like hell but only when I bent over. Actually the private radiologist had spotted a very suspicious area or lesion in the MRI imaging but the team in London hadn't seen it.

I still find it alarming even now how it grew so quickly, it was like a marble under my skin inner upper quadrant left breast but then it didn't grow any bigger during the wait for re-evaluation and chemo to start.  1st June  2105 first appointment in London, 15th June this other lump pops up, 1st July was surgery, 17th August chemo started. That's 2 months, isn't it.  It didn't shrink but it didn't grow any more either. 

Because the London team hadn't spotted it the surgeon followed their report and actually managed to cut around it during the mastectomy surgery, yes, it's really unbelievable how many errors have been made, nobody believed me and if it hadn't hurt I wouldn't have realised it was still there because the implant was hiding it.  So although they were already recommending chemo because the post surgery pathology showed the DCIS was scattered with IDC which was Her2+,  I was now going to have neoadjuvant chemo.

The smaller tumour was far more sinister than the larger one, so size seems irrelevant in some cases.

In fact, even though my main affected area was large at 65mm it was mostly DCIS and they only consider the scattered smaller areas, I likened it to a currant bun, none were more than 10mm and that was a criteria. 

The post op path also showed Paget's disease of the nipple, which I'd thankfully opted to have removed rather than spared. 

I waited until I had the proper diagnosis before telling my kids but that first result of DCIS made the whole thing so much simpler. 

DCIS is stage 0 and nothing to worry about ... yes, they actually tell you that and expect you to not worry, like you can do that. 

My son did say though, you said it was nothing to worry about so I didn't worry. 

My daughter was panic stricken, we all were really, but at least we were able to talk about it, she was 22 at the time. My youngest asked me something the other day and I realised I'd not perhaps kept him as informed as I should have done and actually he did say, when I told him, am I the last to know? Have you told everyone else?  Like he knew because he's the youngest that's how it would be, it wasn't how I intended it was just the others were in the kitchen and he was upstairs when I walked in with the leaflets they'd given me.

The reason I've stuck around, other than to haul the newbies into the lifeboats, is that when I was waiting I couldn't find anything to suggest that tumours over 50mm were anything other than stage 4 and very bad news indeed, and that turned out not to be the case for me. Since 2015 I've jumped in a few times when women arrive freaking out about their huge tumours, over 80mm in one case, it's not the end of the world, it hasn't been for any of us, so let's keep our fingers crossed for you too. 

Any questions shout ... that's a bit of a ramble and there's a few acronyms thrown in for good measure. 

hugs

Carolyn

xx

Carolyn28 Hi Carolyn and thank you for replying to my message(s). 

I'm so sorry to hear about everything you've been through but it is hugely reassuring to hear you've come through the other side and that the size of the tumour isn't the be all and end all. I'm still struggling to get my head round the fact that 3 weeks ago there was no obvious sign of anything and now this! 

I am flipping dreading telling my daughter. She's 11 and she's always been very attached to me. She hates it if I'm ever ill - even with a headache! My older child has severe learning difficulties and autism so we will also have to decide how to approach it with him. 

Basically the whole thing feels like a bad dream but I am determined to be as positive as possible. It will be much better when I've had the biopsy results - at least then I'll know. 

Thanks again for reaching out to me - I can't tell you how much I appreciate it. 

xxx

Hi

My daughter is 10 and is very close to me. I've had BC twice now. The first time I dodged chemo so they (also have a son of 8) weren't too alarmed by the cancer experience.

I was actually waiting for reconstructive surgery when a mammogram showed another tumour in the other boob. I've told them I'm having medicine to try to stop any more lumps coming back before I have another operation. They have been understanding with the fatigue but I'm now starting to lose my hair so I think this will be a big hurdle to overcome for them both. 

I'm trying my damndest to remain positive and finding it easier than last time. After diagnosis you're always living with cancer despite being successfully treated and having no evidence of disease, so this diagnosis just feels like another problem to overcome. 

Stay in touch and try not to worry too much. Headspace have a meditation course called Coping with Cancer if you are into that sort of thing. I've found it really helpful. 

Xx

Haysie thank you so much for your message. So sorry to hear you're going through it all again. I know - I think life is split into two parts - before diagnosis and after. Those 7 words - 'I think it's cancer of the breast' will be a defining moment in my life. I think most women do fear it happening because statistically it's so common, but when it actually does it's so surreal. 

We will have to find a way of being honest with our daughter whilst scaring her as little as possible. 

I'm not massively into meditation but open to anything that might help keep me positive. 

Thanks again. Enjoy the sunshine xx

Hi Janet, 

Sorry that you find yourself in our ‘club’ but great that they’re already working on your treatment plan ASAP. Now you’re in the system you’re in the best hands. 

You're right that it’s difficult to advise until you get for formal diagnosis and finalised treatment plan. It’s also hard to tell you what to expect as everyone’s experience is different. Some handle the situation better than others. I’m lucky that I’m a pretty positive person who deals with things through (sometimes very dark) humour. 

Let us know how you get on once you get your results and if you have any questions just shout. X