Forum Discussion

Mimand's avatar
Mimand
Member
4 months ago

It’s been awhile . Lobular and scans

I just wanted to touch base and say hello.

I was diagnosed 2018 Denovo ILC to GI tract. 
First line of treatment Ribociclib/ Letrozole was on this for just over 5 years . Well tolerated until I could not handle the constant nausea.

I am now on monthly Fulvestrant injections , on and off for a year or so . I did 10 weeks in Europe last year and had a break .

Other than site soreness and constant nausea I’m doing ok . Unfortunately my Lobular does not scan well and tumour markers are useless , so symptoms are my way of knowing things are changing . 
Anyone else with Lobular have scanning issues ? 

 

side effects

1 Reply

  • arpie's avatar
    arpie
    Member
    4 months ago

    Hi Mimand​ 

    Yay!  Europe would have been fun!

    You ILC in the GI Tract is one of the more unusual ones to have!  Are you still seeing your Oncologist regularly eg re your Fulvesltrant injections?  Make sure you tell them of your concerns re not having faith in the scans.  

    Are you still having yearly Mammograms and ultrasounds, or MRI/CT or ANY other scans?    My theory is that ANY scan is still better than no scans - just to give a 'base line' as a that time, for comparison to future ones!

    I have just signed off with my Onc after 7 years - but she has told me I must have yearly mammograms and ultrasounds and bone scans every 2 years - and remain vigilant of any changes to my body.  eg Persistent aches & pains, lumps & bumps .... that may need investigating.   So if you believe you have 'new' symptoms, make sure you advise your Onc, so they can decide whether to have specific checks or not.

    My personal mantra is: 
    IF IN DOUBT, GET CHECKED OUT

    Lobular is always more difficult to check than the other BCs as it doesn't always show as a 'lump' so not as 'easily' seen .... 

    Have you joined the Lobular private group?  Whenever I find anything 'new' on Lobular research, I (and others) whack up a link to it.   Knowledge is Power.

    Take care & all the best.