Large lobular tumour - I don’t do things by halves!

Hello,

I’m a newbie and have been reading but decided to stop lurking and start posting!

I was diagnosed a month back with Er+, PR+, HER2- lobular cancer stage 3 mostly based on tumour size being a whopper at c 10cm (yes that I centimetres not millimetres!). 

Bit perplexed and more than a little surprised to learn of the size of the tumour given I have been to the breast clinic regularly over the last 5 years ( and presumably a 10cm takes some time to grow...?).

Anyway, had a mastectomy last week.  I had a sentinel node biopsy during the surgery. The results came back positive for cancer so they did a node clearance. A week into recovery and am ok but still pretty stiff in shoulders - no doubt to be expected.

Have been told will defo be having rads but chemo position isn’t clear as yet until path report is back. Am hopeful that the nodes weren’t all positive so chemo isn’t such a forgone conclusion. But being a bit contrary about it all and as such equally kind of hope that maybe the chemo would be an effective treatment (given I’ve read lobular doesn’t always respond particularly well to chemo). 

Anyway completely agree with lots of other posts I’ve read that that all the waiting is a worry and energy drain. (I love the expression scanxiety!) Am trying to distract myself by working from home and online shopping for various supplements.

I think the plan post rads (and poss chemo) is to put me in tamoxifen. I’m 41 and pre- menopausal. I’ve read mixed things about the side effects, so am a bit apprehensive about being bounced into menopause a decade early (according to my Mum!). 

Is having overies removed a good alternative or do you still have to take meds?

Really helps to read about other people’s experiences. It defo helps my brain to normalise what’s going on! 

Kx

 

Parents
  • Hey, sorry to hear about your diagnosis. I was diagnosed nearly a year ago and my tumour was estimated to be the same size as yours, I couldn't feel it because of its position but it was have been there for a while, I had positive lymph nodes so had chemo first, then had a good response so had a mastectomy and immediate reconstruction and the. Finished radiotherapy a week ago. 
    I am 43 and have been given tamoxifen, started taking it in November and to be honest have had very little side effects, I think it's more the thought of the unknow that makes me anxious, I've got to have zoladex for three years and zoladronic acid too which makes me apprehensive. I asked about ovary removal and they said they would only do this in people who have a high risk factor or family history of ovarian cancer. 
     

    Here if you want to chat. Look after yourself.

    wl

Reply
  • Hey, sorry to hear about your diagnosis. I was diagnosed nearly a year ago and my tumour was estimated to be the same size as yours, I couldn't feel it because of its position but it was have been there for a while, I had positive lymph nodes so had chemo first, then had a good response so had a mastectomy and immediate reconstruction and the. Finished radiotherapy a week ago. 
    I am 43 and have been given tamoxifen, started taking it in November and to be honest have had very little side effects, I think it's more the thought of the unknow that makes me anxious, I've got to have zoladex for three years and zoladronic acid too which makes me apprehensive. I asked about ovary removal and they said they would only do this in people who have a high risk factor or family history of ovarian cancer. 
     

    Here if you want to chat. Look after yourself.

    wl

Children