Just diagnosed at 39 - any advice greatly welcome!

I remember the day I got diagnosed in May I got a call from my oncologist quite late at night and he just bombarded me with info about the 6 months of chemo, types of drugs, side effects, treatment plan etc etc and I just decided then I can either find this all too much or just get on with it. So I wrote everything he said down, work signed me off and I just thought “let’s do this.” 
when you meet your oncologist come armed with written down questions although meetings with them never last long so find a speciality nurse you like and ask them lots of questions even if you repeat the same questions. Every single question is relevant even if you think it’s a silly question. I ask the same questions over and over again  xx

I think I might call the breast care nurse number on Monday as feel like I need to ask again about what I was told Thursday. It’s hard talking so much info in about something I know so little about. 
just getting on with it is the only option like you say isn’t it. X

It really is the only option yes. You’re in such a hard place as you don’t have all the facts yet so of course you’re worried sick and thinking the worst. I remember when I had my CT scan to look at staging and where it was I went in there crying and shaking as I was so scared about what they would find. 
Absolutely use the nurses, I call mine after every meeting with the oncologist just to go everything again once I’ve had a chance to digest the info. 
I have held up ok throughout my treatment but I have felt quite lonely and I have down days but I allow myself those days as we’re going through a lot! Xx

I asked about further scans but they said they wouldn’t do that at this point? I had an MRI in October before my op so not sure if they are just going to base staging on lymph node results?

Im Assuming then that they aren’t suspecting it’s anywhere else in your body as surely otherwise they would order a CT. They’re very careful with CTs due to the exposure to radiation so you only get one if they feel you really need one. I’m also assuming you don’t have to go through chemo which must be another positive induction they don’t think it’s gone further. 
so the next op will clear out your lymph nodes? Will you need radiotherapy afterwards also? X

They just said it’s best to wait and see what lymph nodes show after op…maybe they’d only do CT if lymph nodes are all positive? It’s just scary as I think what if it is elsewhere and things are moving too slowly. They’ve said chemo will be the next likely step after I’ve recovered from surgery. Not sure about radiotherapy. Operation in January will be mastectomy and axillary clearance. X

I think everyone worries about that, it’s natural to worry about that. Ask your nurse about that and I really hope their answers help alleviate your worry and give you some facts. There will be reasons for every decision they’re making. 
I have just finished 6 months of chemo - I’ve lost all my hair and have terrible insomnia but that’s been my worst side effect on the whole. 
I also have my op mid January and I also worry about it growing between now and then. From what I understand though it’s not enough time to make any significant changes and they’ll be getting rid of everything in surgery anyway 
X

What reason did they give you as to why they did chemo first? This is the bit I’m confused a bit that I’m just sat here waiting and there could be cells lurking anywhere. It feels like such a long time until January. I think having Christmas before then makes it so much intense of a waiting period. Insomnia must be so tough. Especially with kids to look after. Did you try the cold cap or just decide to deal with the hair loss rather than the added stress of trying to prevent it. I’m not sure what to do. 

So I didn’t go for the cold cap, I just asked my hairdresser to shave my hair off when it started to fall out. I have long blonde hair and I love having it done at the hairdressers but losing it honestly hasn’t taken up much of my mind space. But I am looking forward to it growing back now as I look horrendous! 
Goose who you were also chatting with I think went for the cold cap so she would know more  

They did chemo first as I was told because I was lymph node positive and they do the chemo first to shrink the tumour but also to zap any micro cells that could be floating around but this answer really won’t help your existing worries. They used to always do the surgery first and then chemo as this is what the 2 people locally to me had when they went through this. But every treatment plan is different and all plans will have their reasons for why things are done a certain way. 
The insomnia is tedious, I’m not a great sleeper at the best of times. I’m one of those people who worries about things at 2am! The steroids I was on mean you hardly sleep at all and I just think the chemo in general sends your body out of whack. I also lost my mum to cancer this summer on my 40th birthday (totally different cancer and totally unrelated) so I’m grieving and not dealing with it all very well. 
Please do let me know what your nurse says next week about why you’re not having chemo yet etc. there honestly will be a reason, they would not put you at any risk xx

Yeah this confuses me with my diagnosis now. Why wouldn’t they do chemo??? Sorry I know you’ll have said but my brain is frazzled…how did you get diagnosed with positive lymph nodes as not had surgery yet? Was it from a biopsy? did you have a visible tumour in lymph nodes when they did ultrasound? Sorry so many qs. I’m probably being really slow, I’m easily confused at the min, hard to process anything!

oh my gosh, I’m so sorry about your mum. What an awful year for you and on your 40th too. No wonder you are struggling with sleep, hard enough without all the chemo/steroids playing their part too. Such early days grieving for your mum. I hope you’ve got good people around you. X