Hi Gloria 

Your Predict score is similar to mine.I had 55 mm lobular with one node positive.Am ER and PR positive

op only 72 %

chemo up to 80%

Hormone up to 84% 

My chemo decision has been further complicated as I firstly opted to pay for Onco DX test privately, to help me decide (trust wouldn't fund as one node positive ) The test was then messed up as lost by Fed ex so I never got that information.

I have now decided to go for chemo anyway and am happy with that decision.The factors which influenced me are, 

I lost faith in the Onco test 

I haven't had any other scans for cancer anywhere else in my body - they say I don't need them but that was pre surgery when they thought my nodes were clear.

I am healthy and have no pre existing health conditions.

If I have a reoccurance I would always think it was because it didn't have chemo ( not totally logical but I would think that)

I think it is difficult when we have to make these decisions and its obviously a personal choice but if I had a meduim risk of recurrance it would be a definate for me.

Good luck x

Hi, Thank you for your reply. It seems that you have made your decission. Well done! 

The trouble with Onco and Prosigna is that theygive graded scale of risk broken up into low, intermediate, and high risk categories, whereas MammaPrint is either low or high risk. Oncotype is applicable only to estrogen receptor (ER)–positive tumors; MammaPrint can be used for both ER-positive and ER-negative tumors. It looks like that Mammaprint is more helpful.   There is no Mammaprint in the UK, but there is in Netherlands. It is around £2400. Maybe I should have gone for that in the first instance. There remains little in the literature focusing on the role of Oncotype DX in the management of ILC, with more research this may prove a vital tool in impacting ILC treatment decisions regarding the use of chemotherapy 

In Predict tool: The survival rate is also calculated with the impact of Bisphosphonates. 

Here is the link so you and the rest of ladies can calculate yourself breast.predict.nhs.uk/tool

I 

I would also think that scans of other parts of the body... PET scan is always helpful, but here in the UK nobody recommends it. The only thing i know is that scans might not work as to find metastatic deposits is challenging due to the discohesive nature of the cells

I have also found in one of the scientific research papers that highlights some heredetaary links. Hereditary ILC is rare but cases have been reported to occur as a secondary tumor in patients or families with hereditary diffuse gastric cancer syndrome who harbor a germline mutation of the CDH1 gene.  Both of my parents died of cancer gastro and colonrectum. 

An finally, The use of letrozole seems to provide greater overall survival (OS) benefit compared with tamoxifen, suggesting an increased incidence of endocrine resistance in ILC patients treated with tamoxifen. So, Hormone blocker Letrazole seems to be the one for us! 

I am still reading reserch papers which will help me make a decision but I would strongly agree with you that If I have a reoccurance I would always think it was because it didn't have chemo. This is very logical indeed. 

Good luck to you too. xx

Hi Gloria

Thank you for your detailed reply.

I too have been looking at the research papers , alot of the trials for Onco are based on node negative , which also wasn't discussed with me.

I also read about letrazole being more beneficial , I have been told I will be on Tamoxifen for two years then Letrazole.

I had 5mm cancer in lymph node which didnt show on MRI so yes scans not always useful for lobular.

Do you think lobular is more likely to recur rather than ductile , this seems to be the general opion but I can't see any research which actually scientifically confirms this ?

Hi Gloria

Thank you for your detailed reply.

I too have been looking at the research papers , alot of the trials for Onco are based on node negative , which also wasn't discussed with me.

I also read about letrazole being more beneficial , I have been told I will be on Tamoxifen for two years then Letrazole.

I had 5mm cancer in lymph node which didnt show on MRI so yes scans not always useful for lobular.

Do you think lobular is more likely to recur rather than ductile , this seems to be the general opion but I can't see any research which actually scientifically confirms this ?

well, some reserch say it the same, some that it is worse for ILC after chemo... I am lost at this myself....  

"Interestingly, despite responding poorly to chemotherapy, ILC patients do not have increased rates of recurrence and survival is comparable to IDC" www.ncbi.nlm.nih.gov/.../

"These results indicate worse overall survival after chemotherapy (neo-adjuvant and adjuvant) in ILC compared to ER+HER2− IDC even when correcting for tumour grade, age, size, and nodal involvement, but validation is needed in a larger study population."www.ncbi.nlm.nih.gov/.../