I been there done that as they say. Felt out of control about decisions being made for me. Had a lumpectomy and sentinel lymph node removed then found it had spread to lymph nodes so back in for full axillary clearance. Thank god I don't need chemotherapy but do need radiotherapy and the tablets for 10 years instead of 5. Don't know when that will start it's all a waiting game. Try to keep positive love. When people ask me how I am I say fine paint on a smile and keep going. Just stay strong keep you chin up xx

I totally understand the 'painting on a smile'. In front of anyone I see it's all ''yeah, I'm fine, it is what it is. It'll be fine'. Inside I'm screaming - leave me alone, I'm not ok. I'm scared but don't want to upset my husband and daughter. 

Whenever I see anyone I know...'How are you Nick?'

'I'm good, you?' Is always my response. Inside screaming again! 

I with you on that. I want to say how I really feel but it's too difficult to put into words without sounding sorry for myself I don't want pitty I don't really think I want anything except for this to be over. Still we will keep smiling saying fine

By the way fine stands for

F = *** up

I=Insecure 

N = Neurotic

E = Exhausted 

This is why I smile when I say it. Chin up love I'm alway here if you need a chat xx

You too. I love the F I N E. Says it all! 

N

Hi,

Just wanted to jump on this thread as I'm a bit further on in treatment and know how hard all the waiting is. It's bloody hard going and completely normal to be up and down and not really know how you feel. 

I had a lumpectomy with sentinel node biopsy and original plan was radiotherapy followed by hormone therapy. As we now know plans change and positive lymph nodes were found with extracapsular spread. This has sent me down the chemo route and I'm 2 down with 4 to go. Hard but doable and by middle of June this bit will be done. I'm having axillary clearance after this then radio and now 10 years of hormone therapy.

If I think about it all too much its bloody terrifying so I break it into little stages and get through one treatment at a time.

People mean well, but all this stay strong and you're a warrior aren't always helpful. Sometimes you just want people to acknowledge its all a bit *** and let you have a good cry! We will get through this ladies it doesn't matter how you do it and everyone is different.

I wish you all the best.

Kaye xx

Hi Kaye

Sounds like you've had a rather rough time of it! 

I must admit, I am getting cross every time I get told 'You're a tough cookie, you'll be ok'. I just smile it off and agree. Inside screaming 'I'm not b****y ok'. I know they mean well. But it is making me not want to see or speak to anyone.

I am worried that my plan will change again after my 2nd surgery. Scared they'll tell me I need chemo. I know I'll just deal with it if it happens but it's the waiting that is hard.

Wishing you all the best with your treatment. I have found my heart shaped cushion a comfort saver as my underarm is still swollen, sore and hyper sensitive. 

You're so right though. We will get through this. Each in our own way. Talking to people who understand is making it that bit easier and feel less alone.

Nicky xx

Oh I love that.

I’m going to be saying I’m FINE from now on xx

Wish I could contact you outside here. I've been thinking about you all day. Are you ok? I doubt it! Xx

Whereabouts do you live? Which area ? I’m in the midlands.

Think is weird how complete strangers make such an impression on you when you have something in common. I thought about you lots when you were going for your results.

I’m ok at the moment because I’ve had a glass of wine and am thinking positively.

Not doubt tomorrow I’ll be feeling differently.

Do you know when your second surgery is? X

Hi Bettyjayne.

I'm in south east - Surrey. My next op is on 7th April. Then 2/3 weeks after that I'll see the surgeon again to discuss results and next steps (again). 

Like you, I'm worried if chemo is going to be needed. Surgeon didn't say either way and I didn't ask. Brain was busy coping with a second surgery. She said that if the margins are still not enough it will need surgery no. 3. She said if that happens, I might want to consider a mastectomy. Scared the pants off me. 

Like your husband, mine was surprised I wasn't happier. I think all he heard/took in was - They got the cancer out, just margins to clear. If I have a big dent, they can fix it.

I heard/took in - grade 2, grade 3, another op, maybe another after that, mastectomy. Weird how the brain works.

Just want it to be over. It is all I think about all day. I'm running out of jigsaw puzzles too

Keep positive xx

So a question for you and anyone else who can answer it for me........

The surgeon got the cancer out during lumpectomy with clear margins, no spread to lymph nodes so do I still have breast cancer ?  

Xx

I also had a lumpectomy (it was quite big - 4cm) with clear margins and no spread to lymph nodes (had a sentinel node biopsy during surgery).

I now have 6 rounds of chemo (starts this week) and then radiotherapy as well as hormone treatment and Biophosphonate.

The way my oncologist explained it to me is that although they had clear margins so had got all teh cancer out there might be a rogue cancer cell floating around hence the reason for the chemo. 

I also had a lumpectomy (it was quite big - 4cm) with clear margins and no spread to lymph nodes (had a sentinel node biopsy during surgery).

I now have 6 rounds of chemo (starts this week) and then radiotherapy as well as hormone treatment and Biophosphonate.

The way my oncologist explained it to me is that although they had clear margins so had got all teh cancer out there might be a rogue cancer cell floating around hence the reason for the chemo. 

How you feeling about the chemotherapy Jett66? My biggest fear is needing it.

I was so relieved when I was told my route would be surgery, radiotherapy and hormone treatment only to be told on Friday they have done an Oncotype test which will determine whether I’ll need chemo first. 

So here I am again waiting for the oncologist appointment to find out the results.

Thanks for explaining what your oncologist said. My husband has been so excited because the cancer is out and think he believes I’m completely better whereas I’ve been a lot more hesitant to celebrate just yet. 

My aim is to try and carry on as best I can but of everything its the chemo that is making me the most anxious. I think its because I dont know what to expect and no one seems to give much info as they say everyone handles it differently.

It's hard to know what to do about work. Also, my son is Year 13 at school so want to try and be as normal as possibly (minus hair) to limit impact on his A levels.

I found making the decision about work the hardest thing as I’ve never been off before and am rarely ever ill.

I teach primary aged children and have now decided that I won’t be going back until I’ve finished my treatment.

This was the decision I came to after a nurse explained to me that covid hasn’t gone away and if I caught it my treatment would be delayed by 7 weeks. I’m not prepared to take the risk. I want all of this over as soon as possible.

It is hard to carry on as normal when all I’ve wanted to do is curl up and stay in bed. I’m lucky my children are older so understand. Having my 3 grandchildren here help me forget what’s going on for a few hours as they keep me busy.

Hi 

I hope you don't mind me asking why you were given chemo tx ? You had clear margins and no lymph nodes? What type of cancer was it? 
 

I have to go for 2nd op to get clear margins on my 18mm her2 pr/er positive Tumour and I'm anxious I may need chemo as there is an unclear margin all be it very small

i hope you are keeping well now 

lucy x 

I believe it's because I have invasive lobular breast cancer. My oncologist said it was that although there were clear margins there could be the odd cancerous cell floating around so it was a belts and braces approach to ensure it doesn't return.

That would make sense

how did you discover it as I think it's harder to detect isn't it? 
so pleased u did tho and your ok x 

I found the lump myself. 
 

I have now done 4 of the 6 chemos and coping ok. Next up is radiotherapy! I have been lucky as I am able to take a week off after each round of chemo and then back to working from home for 2 weeks. 
 

But I will definitely be relieved when the invasive type treatment is over and my hair starts returning!!