Hi sorry to jump on your post .

I had a lumpectomy and axillary clearance last August,  they removed 18 lymph nodes and 13 was cancerous,  5 weeks later I had to have a re-incision because they didn't get clear margins,  luckily after the 2nd op they got clear margins. 

I still suffer numbness under my arm , down one side of the arm and on the shoulder,  luckily I have full movement in that arm its just the numbness and the having to be careful of getting bites and scratches due to having no lymph nodes in that arm and of course now the summer is arriving having to make sure I wear high factor sun screen so not to get burnt. 

I was supposed to have had chemo,  radiotherapy and hormone blockers,  I refused them all , my choice .

I have a dented breast where the scar is and was told they could do plastic surgery to improve it but it doesn't bother me , I'm 51 and long since showed that part of my body to the world lol .

I wish you luck in your recovery x

Hi.

It must have been a hard decision. 

I got a copy of a letter sent to my doctor about what was found.

Had a 16mm grade 3 and a 24mm grade 2 invasive ductal carcinoma in 90mm of DCIS. 2nd surgery soon to try and clear margins.

Only radiotherapy was mentioned before my 1st surgery but am now worried as they found grade 3 that I'll need chemo. Not sure what to do but guess no point fretting until I'm told...

Hope you are keeping well xx

Hi, 

Yes it was a hard decision but felt it was right for me, I know my chances of it recurring is very high but I guess I'll face that if and when it happens. 

I only had the one lump , at first they thought it measured 22cm and thought it had gone into one lymph node but after they'd removed it they realsied it measured 28 cm and had spread to 13 lymph nodes,  plus they didn't get clear margins so needed another to get them which they did , but because it had spread to 13 lymph nodes they said it was grade 3 and needed to do a bone scan and CT scan to see if it had spread elsewhere. 

The bone scan came back clear , the CT scan showed a shadow on my right lung (breast cancer was in the left side) they seen a shadow on my kidney , that turned out to be a fatty benign lump needing no treatment , the lung shadow is a nodule and need to do more CT scans to keep an eye on it , well I had another CT scan about 3/4 weeks ago now and they rang me to say I'd need another CT scan in May because the nodule had changed , she didn't explain what it meant or anything else but did say if it had changed again in May would I be prepared to see the Consultant again , like you say there isnt any point fretting about it at the moment until things are finalised. 

I'm ok the original diagnosis kicked me about and sent me back in depression , but after 6 months I'm slowly starting to pick up .

Hope you're OK? X

Hi, it's been a while. How are you doing?

I had my 3rd surgery yesterday. They found more grade 2 cancer and another dodgy lymph node in my 2nd and margins were still not clear. Now the 3 week wait for results...

Hi,

It certainly has been a while .

Sorry to hear you've had another surgery though :-(

I'm ok I guess, suffering with my mental health .

Have had 2 more CT scans , one in March and one the end of May , when I had a CT scan last year they found what I think they call a lung nodule,  they said it was an area of concern. 

Well in March they said the CT scan showed the lump had changed , they didn't know what it was still but I'd need another CT scan 3 months later which is why I had one the end of May, I think the results are due in the end of next week .

Hope you're OK?

Hi,

It certainly has been a while .

Sorry to hear you've had another surgery though :-(

I'm ok I guess, suffering with my mental health .

Have had 2 more CT scans , one in March and one the end of May , when I had a CT scan last year they found what I think they call a lung nodule,  they said it was an area of concern. 

Well in March they said the CT scan showed the lump had changed , they didn't know what it was still but I'd need another CT scan 3 months later which is why I had one the end of May, I think the results are due in the end of next week .

Hope you're OK?

Blimey, you're really going through it! The waiting and not knowing must be driving you nuts.

I've not had CT scan or anything like that. Not even been mentioned. 

I was told that if the results from this surgery don't come back clear, then it will be a mastectomy. Got a 3 week nervous wait now. 

Was asked to consider the Optima trial. Trouble is, I don't know if chemo is even on the treatment plan and won't know until I eventually see an oncologist. 

My mental health is shot. I just want it over. I'm so down a lot of the time. I try to take my mind off it but something crops up and reminds me. Seems every advert break on tv has a cancer advert. I can't concentrate. I even struggle to get a simple sentence out. 

I hope your results come back with good news for you next week! Keep in touch. 

Xx

The waiting game is the worst part and you must also be going nuts with waiting.

I am very surprised that  CT scan hasn't been mentioned to you though . 

When they realised the cancer was more advanced than they first thought the first thing they suggested was a CT scan and a bone scan , bone scan came back clear .

The fact you needed a third operation but not offered chemo or radiotherapy is a bit puzzling .

When they diagnosed me with stage 3 breast cancer they at first said it was stage 2 but after the first operation and realising it was bigger than they thought and had spread to 13 of the 18 lymph nodes removed and having to have the 2nd to get clear margins they told me there and then that I'd need bone scan and CT scan plus so many sessions of chemo and radiotherapy plus hormone blockers,  neither I might add have I taken. 

Maybe different areas do things differently? I'm in the south west of UK. 

You also keep in touch x

I'm in south east.

After my biopsy, they told me it was stage 1. They've never told me any different. The cancer removed was grade 2 and grade 3 (3 different lumps). 2 out of 7 lymph nodes affected. 

Perhaps it's different because of stage/area/hospital... who knows. Doesn't help with the worrying though. I'll add it to my note book and ask when I see surgeon in a few weeks.

X

Still sounds strange, write a list of what you want to ask , I always find I'm dumbstruck at the time and think of questions long after so usually take my partner and she asks all the questions   x

I take my husband with me but we both forget to ask the questions. I was stunned when we went last time - wasn't expecting them to say more was found. Just sat there nodding. I have a little notebook now that I keep in my bag. Everytime I think of something, I write it down. 

I've tried speaking to cancer nurses and they are really lovely and supportive, but don't have answers.  

Just over 2 weeks to wait now. As long as results come back in time... the waiting really sucks!

How are you getting on? Feeling ok?

Thats me haha,  always remember I was supposed to ask this and that once I'm back home .

It's a bit unusual for the BCN not to know anything though , as I found mine knew the answers when I asked questions, I do leave the asking of questions to my partner though as I don't really like speaking on the phone , the BCN are good tho because o ce they phone me to tell me something they ask if they should phone my partner to tell her .

I'm ok thank you , tired but I suffer M.E so thats a usual occurrence for me , I am expecting my results of the latest CT scan to come through at some point this week which I am dreading and really hoping its good news but I can if you wish let you know once I do get the results? X

I'll be thinking of you with fingers crossed for good news. Only share if you want to though. X

Will do  snd keep me informed of your news too please x