Sorry, just sent a big reply to you and it didn't post.  This site can be annoying sometimes.

Hi Clarky15,

Sorry that you're going through this.

I was diagnosed with grade 1 ER+ HER2- in June. I was talked into having a mastectomy as my tumour was quite unusual and the consultant was honest and said she just wasn't confident that they'd remove the tumour and get clear margins, she also said I'd lose my nipple either way and my breast would likely look quite odd anyway. 

I had my mastectomy 4 weeks ago. Like you, to begin with chemo was never mentioned. However, I've now had my results, the tumour is double the size they thought it'd be - 6cm, now grade 2 and I had micromets in one if the two lymph nodes that were removed. Because of all this, chemo is now up for discussion. I have an oncology appointment tomorrow to get more information.

The unknown is the worst part! I've been dealing with it all quite well as from my diagnosis to my surgery, everything moved so quickly and I knew what the plan was. These last couple of weeks, not really knowing my next steps have been hell and tomorrow can't come quick enough! 

I understand your frustrations with your husband and your friends! The surgery is just the tip of the iceberg, there's still so much more to come in your recovery and it's so true that no one understands our struggles unless they've been through/are going through them which is why this forum is great! Unfortunately I don't think it'll ever really be 'over' for any of us. There's going to be a new normal but I know for sure I'm never going to be the same person ever again. For a start I spend most days on my phone looking through forums, researching all things breast cancer, radiotherapy, chemotherapy. It's my way of feeling in control but my god does it consume you!! 

Do you know when you might receive more information? X

I know what you mean about spending loads if time on forums etc. I'm reading things daily. I do try to not spend too long on them now as I was virtually spending all day looking for answers that no one could answer. And most of the time I just ended up with more questions. 

I should get results from my op in around 2 weeks. Still waiting for an ultrasound appointment for other boob. BCN told me it could be a few weeks and I have to wait for them to contact me. 

The waiting part is the worst! Living with a constant knot in my stomach.  I try to busy myself to take my mind off it but nothing does. 

I'll be thinking of you tomorrow. Hope it goes well. X

I hate it when that happens. X

I've had a similar experience with the issues of Chemo or no Chemo.

I had a full mastectomy 30th May my choice.

I thought I would get away with Chemo but as the tumour was 8 cm the oncologist wants me to have chemotherapy now and I start on Tuesday.

If they offer you chemotherapy go for it for peace of mind good luck  

If they offer, I will go for it. I want everything thrown at it to get it gone! Ultrasound on other side tomorrow as found a lump a few weeks ago. Mine weren't that big! Blimey! Mine were 26mm and 16mm in over 90mm of DCIS.

Hope it goes well for you and you don't feel too rough xx

I feel like it's quite a lonely thing having cancer. Even with well meaning family and friends around. Also, there are times when I want it to be private as when my husband worries about me and my future, it makes me more worried. 
 

i think it's unfortunate that the professionals aren't being clear with you. Of course you would be confused and frustrated. 
 

i hope it goes well.