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
  • Hi

    im sorry to hear your diagnosis.  
    I was 48 when receiving my diagnosis and have gone through the same with 10cm lobular breast cancer, ER+ tumour.  Wasnt at the age to get regularmamograms and with no stmptoms or lump, it just seemed to have crept up on me.  Due to the size, I had a mastectomy, lymph node clearance (as 24 out of 32 nodes positive). Im a bit unusual (according to surgeon), as im high risk as have large lymph node involvement but my Oncotype (recurrence score on your tumour) is very low at 11 out of 100 which makes me low risk - confusing!  Anyway, I went through 6 cycles of chemo (3xFEC, 3xDoxetavil) which wasnt too bad and followed by 15 rounds of radiotherapy.   As far as Oncology feel, Im cancer free.  Now on daily Anastrazole tablets and have prostat injections and recently had my first Zoladronic injection (which is absolutely fine).  Im struggling with knee joint pain which is a side affect and other than hot flushes Ive been fine.

    As horrendous a position were in, its good to hear from others who have had similar diagnosis. 

    just want to reach outand send positivity to both of you on this link.  Love to hear how your journey goes giving any support or advice to one another.

    We have this xx

  • Hi, 

    I was diagnosed with a 74mm invasive ductal,grade 3, ER+,HER2- 'tumour'. Had a mastectomy in January, managed to remove it all and no node involvement(surprisingly), Chemo then radiotherapy for 'belts and braces'.

    I'm 44 years old and due to start having the prostap injection every 3 months and exemestane daily. I've scoured round the forums and cannot find much info about the prostap injection. How are you getting on?

    Also a big hello to all the large lump ladies. How are you getting on?

  • Hi, Ive had a few prostap injections now and they are absolutely fine.  I initially had the monthly injections and thought changing to 3 monthly would mean a bigger injection/needle.  Dont know why but its not.  Its just a slower release - Im always amazed how medications work!

    I had some slight side affects like headache and niggly tummy but nothing a paracetamol wont help.  

    Hope that helps. xx

Reply
  • Hi, Ive had a few prostap injections now and they are absolutely fine.  I initially had the monthly injections and thought changing to 3 monthly would mean a bigger injection/needle.  Dont know why but its not.  Its just a slower release - Im always amazed how medications work!

    I had some slight side affects like headache and niggly tummy but nothing a paracetamol wont help.  

    Hope that helps. xx

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