Hi Kayjay8, 

So sorry you are going through all this. 

Is there a Breast Cancer nurse you can talk to while your Oncologist is away? Macmillan are very good at answering questions if you call their helpline.

Hope all gets better, 

Ceyenne

Hi kajay. 

I can understand where you are coming from with disappointment for treatment but remember it did shrink it some. 

I'm on palliative care since February 2016 prostate Cancer gone to lymph nodes, spine, ribs, pelvis and a lung. Had chemo which stopped and shrunk it some then i wait for it to start spreading again. I call it my uninvited guest. Just been having more scans and blood test because it it decided to bite me the other month. Main thing is keeping positive and keep fighting nomatter what.. 

Good luck with whatever treatment you have next. 

Billy 

Thanks for your reply. I'm not very good with telephone conversations. I'll probably end up blubbering and making no sense whatsoever. I've just remembered I've got a clinic appointment next Tuesday to see nurse with my mastectomy and lymph node scars, so I'll ask her some questions then. If I'm told positive things, I believe them and feel and act positive. I also like to be told the worse that can happen so I'm prepared for disappointment. While waiting to see my surgeon the nurse said that I would be getting really good news. I was so excited. Then my surgeon came in and said that I made right decision with opting for mastectomy, as would have struggled getting out what was left of tumour with a lumpectomy, and then went on to say they'd found active cancer cells so would be needing further chemo, as well as radiotherapy which I had expected to have. From feeling so happy with the hint of good news from nurse, I felt sick with disappointment at the news of further chemo treatment. 

Hi Billy, yes it did shrink it a little. Surgeon said they'd managed to get all tumour out, as well as lymph nodes cancers. I just wished they'd told me it was possible I might need further chemo, instead of building my hopes up so high. This time I'll be going for treatment in a completely different head space. So sorry for your cancer situation, and you sound like you've accepted it. I hope eventually I'll accept mine. As long as they're honest with me, I will be. 

Hi Kajay8,

You've certainly been through a lot. How discouraging that it has not been as successful as you and your doctors hoped.

I couldn't help noticing this part of your original post: "I was assured that the neoadjuvant chemo was highly successful. I was not told it wasn't guaranteed". This seems to be an unfortunate (and unintentional) miscommunication from your doctors. When doctors think of a treatment as "highly successful", they mean that it has a high success rate amongst the people to whom it is administered, statistically speaking. But when they are telling this specifically to you, it's natural to think of it as applying to you personally rather than to some unspecified statistical group of people.

I can understand why you are feeling discouraged, and yet if another round of chemo might make the difference between getting rid of it for good or not, perhaps you will be ready to give chemo another go despite all the side-effects. Or not, which is also your right if you so choose.

Hi kajay. 

Don't know if it's acceptance or I've got to keep going, I'm looking after my disabled wife she needs 24 /7 care she has Alzheimers and parkinsons plus a few other problems. I had to promise I'd look after her before she'd marry me she's nearly 14years older than me we've been married nearly 50 years so haven't done bad

, main thing is being positive, thinking you are go to beat it nomatter what., as [@Chriss]‍ ‍ says get your pink boxing gloves on and give it what for.you can swear if you want aswell. 

Billy 

Wow, you are such a strong person. I admire your strength. And, you're looking after your wife with her illness too. I'm having a small blip. I think I'll be okay once I've had chat with Oncoligist. I've had a letter through today. Will be speaking to her a week next Thursday. Once I hear my options, and decide what I'm going to do, I'll just get on with it. Thanks for reply :) 

Hi, yes, I think it was miscommunication. I was definitely not told there was a chance it might not work. With my mastectomy, my surgeon told me I had option of a lumpectomy or mastectomy, but he couldn't guarantee he would be able to get all of tumour out, and that in that case, I would then have to have further surgery and a mastectomy.
 

I've had this tumour since at least July last year when my GP said it was nothing to be concerned about, and was due to trauma from a tight wired bra. I went back to another GP in December as I noticed a change of shape to my breast, which turned out to be caused by a 6 cm lump and cancer. I hadn't even noticed it. I just wanted it gone with no more delays. After my op, he said my decision to go straight to mastectomy was the right one, as he would not have been able to get all tumour out with just a lumpectomy.

If I only need a couple of sessions of chemo, I think I could accept. It's the thought of another 5 of being so ill, as side effects lasted the whole three weeks and not two. 
 

I just want them to tell me the worst case as well as best case. 
 

Thanks for reply. 

Just an update for you that responded to my first post. 
 

I'm recovering well from my mastectomy and lymph nodes removal. Just a little bit of sensitivity and a tiny bit of cording but it's much better than it was. 
 

I start 15 sessions of radiotherapy next week, and after they are finished, I'll be having 8 sessions of Kadcyla chemo which should finish in February. Kadcyla, I'm told, will be a walk in the park with side effects, compared to TCHP. I shouldn't lose my hair. But I'll only know how my body responds once I start it after radiotherapy. 
 

I'm told I will be on Letrozole for 10 years after chemo finishes. 
 

At the moment I'm feeling more like my normal self and have been out with my husband in our camper van on days out exploring, and spending a couple of nights on small, off beaten track campsites, and hiking here in North Wales, where we live and love. 
 

Making the most of feeling good :) 

Thanks for replies.