Forum Discussion
EAA
7 years agoMember
Contralateral Breast Cancer
Dear Sisters
About 6% of us have had Contralateral Breast Cancer.
Trying to find others to discuss any surveillance offered after second primary tumour hormone therapy ceased.
With a family history ,non BRACA 1 & 2 my self discovered second tumour notched me up into a high risk
category for advanced breast ca. What surveillance for early detection is available? Looking for similar
experience in others. We seem to be a rare unmentioned category! Thanks so much....Stay strong..
11 Replies
- EAAMemberThanks for the encouragement kmakm.
- kmakmMember@EAA This forum is an amazing hive mind, and a lifeline! K xox
- EAAMemberI share your thought kmakm. It’s a bit of a worry! Having had one second tumour missed I’m hyper vigilant any others will not be missed! I find myself requesting imaging and being refused.
difficult to understand as I’ve read by the time a tumour is palpable the underlying abnormal cell division will have been happening over years. Early detection remains a mystery, I think the underlying disease challenges some of the guidelines. I remember years ago when PET came into the public space. It was welcomed as the most advanced imaging for early detection at this cellular level of cancers.
Over time it may have been overused! Now, restricting its use may be due to cost and science is good at justifying publlicly reasons for its restrictions, Not being scientists we’re in the land of unknowing!
Cancer care is so generic! I’m finding it difficult finding a practitioner
who is a scientist as well! Individualised care is an expectation hard
to fulfill,
Great to chat! Tonight, I’ve been so encouraged by everyone..
we are not alone.. Our collective knowledge and heart felt feeling
is so warming.. - kmakmMemberThat's an excellent page @primek. Thank you.
No 9 caught my eye. Interesting how often we hear of men & women being sent away being told they are too young/wrong gender. Their GPs are not meeting that standard... - EAAMemberThanks so much primek . Very grateful.
- primekMemberTook me some time to find this...but these are our current treatment guidelines
https://thestatement.canceraustralia.gov.au/ - EAAMemberThanks kmakm and primek....I’ll follow up..very helpful.
Dear Primek,do you have follow up with your GP or Oncologist.?
Was your GP able to order your imaging.. Thanks. - primekMemberBoth my sister and I have had breast cancer and her daughter but we've been marked as a no as yet identified genetic risk. Of course all sisters are on high surveillance.
When my sister had breast cancer first diagnosed some 20 years ago it was standard to do CT scans and bone scans at least annually. Research revealed it was of no benefit for early detection of mets and just caused people terribke anxiety. My sister had 5 clear years. 3 months after surveillance ended she had rib pain. A ct scan revealed mets then. It wasn't visible any earlier.
Because of current...check if concerned...in the last 3 years I've had ct scans of back, whole body, abdo ultrasounds and shoulder mri. All cancer free...but evidence of degenerative disease. So the surveillance happens if you discuss any new health worries with your Dr and always remind them of bc history. - kmakmMember@EAA I did a spit test for a panel of genetic mutations, several of which are linked with increased rates of BC. Turns out I was positive for one of them, CHEK2. It cost about $400. You might be interested in looking into it. K xox
- EAAMemberThanks Primek. Where we have a family history and non BRACA1&2, we just may beamongst the 80% for whom a gene has not been found. There are studies being done oncell methylation. (A bit complex for me) but im longing for Liquid Biopsy to become available. I cant understand why PET cannot be done to see if the cellular activity is stillabnormal. Sophisticated scans seem to be done when the disease is self evident.Ive concluded, the only early detection is public mammogram screening! We justwait for the next event... All rather contradictory given early detection is the best intervention at whatever stage.. Thanks for encouragement and knowledge..Go gently and well...