Lobular carcinoma in situ, anyone know about genetic testing

Hi everyone 

I had a bloody discharge from my left nipple that I found just before Christmas. I was seen in the breast clinic mid January and after a mammogram and scan which showed nothing, the consultant wanted to do a major duct excision to rule anything out. He thought it was most likely a papilloma.  I had the Hadfield proceedure to remove my ducts in February and he had to go quite deep on one duct. I went for my results yesterday and there was a papilloma as suspected but also a small area of lobular carcinoma in situ (LCIS). The consultant explained that this just means I have a slightly higher chance now of developing an invasive cancer and I will be monitored for the next 5 years. This has totally freaked me out. It was my mums anniversary yesterday too, she died  suddenly of sepsis and I had to bring my kids up without her support and my kids lost the experience of a loving Grandma. My mums mum also died suddenly when we were kids. I don't want my kids or grandchildren to go through that pain.

I have big boobs and worried I won't find any lumps if anything develops. I've read lcis is rare, only 735 people are diagnosed per annum but the rate of invasive cancer at 20 years is 20%. That sounds huge to me. I'm 47 so I have a decent chance of developing cancer in my 60s. That's still so young.

I'm due a follow up in 6 months so I want to ask about genetic testing (my dad had prostate cancer which I've learned is sometimes genetic cancer and a few cousins  and aunties on my mums side have had breast or bowel cancer) and I'm going to ask about tamoxifen. My head is spinning with it all. I know I'm more fortunate than others as I've not actually got an invasive cancer, but my anxiety is through the roof. I'm sorry for  the long post and if anyone thinks I'm dramatic, but just wondering if anyone else has any experience of this. Thank you for reading and listening.  

  • Hello Loopy and welcome to the Cancer Chat community.

    Hopefully some of our members who have been given the same diagnosis will share their experiences and advice with you soon but if you'd like to talk things through with one of our cancer nurses they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    I noticed you mentioned genetic testing. You can find out more about this on our website just here but if you have any questions just give our nurses a call on the number above. 

    I hope this proves useful and that these tips I've found will help with your anxiety at this time.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi Steph

     

    Thank you for the reply, its nice to know there is someone to talk to. I spoke to my consultant yesterday, he doesn't think genetics would test me as tge history isn't strong enough. I'm starting tamoxifen next week so I'll hopefully be ok.xx

  • [@Loopy107]‍ Hope your ok. Such a lot to worry about! 

    Im sorry for the loss of your mum, these anniversaries can stir up a lot of worry.

    The genetic testing criteria is literally so confusing! I have tried to wrap my head around it over the years. But I have a cousin, aunt and grandmother with bc all on my paternal side. Since my own bc diagnosis I’ve been referred for genetic testing. However, it’s partly to do with my age (32) and my cousin was 41 when she died.

    I think it would definitely be worth asking for a second opinion and maybe call one of the advice lines as they understand the criteria a lot more than me. It seems unfair it’s so difficult to get tested. 

    All the best 

    Phili xx

  • Thank you for replying Phili,

     

    I think.i will just give the number a call and just see. I don't think I fit the criteria for the bc as its literally just 3 cousins and a couple of her aunties on mum's side and her side is huge. I was more interested in my dad as I would never have linked prostate and bc until I read about it. 

    I'm sorry about your diagnosis at such a young age, you absolutely qualify! I hope it comes back OK and your treatment goes well. 

    Sending love and positivity 

     

    Lou.x