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 

I was IDC with cancer in 2 lymph nodes, so am not familiar with Lobular. After masectomy I decided to have chemo and radiotherapy and am now on Anastrazole. 
with Predict the percentage benefits were not that high, but 2 years down the line, I feel that I have thrown everything possible at the cancer to prevent recurrence. 
I am sure you will make an informed opinion and I wish you all the best whatever you decide. 
 

Silver 

thank you very much Silver :-) wishing you all the best

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 there,

I had a 4cm lobular breast cancer. I had a mastectomy followed by 4 sessions of EC chemo. I also had one lymph node involved. I then had 15 sessions of radiotherapy. 

I had read that chemo wasn't effective for lobular breast cancer but when I queried this I was told that there's no way I'd be given chemo if it was of no benefit (it costs the NHS a fortune so they wouldn't give it for no reason) so, I decided to have it, even if the benefit was small. I also asked about lobular being "worse" than ductal. I can't remember the exact answer but it's something about hormone negative lobular being slightly worse than hormone negative ductal . If it's hormone positive there's really not much difference 

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/.../

Thanks Moll

That's interesting about the hormone comparison and yes some people want chemo but aren't offered it . To me even if it's a small benefit I am going to take it. 

I have been told I am having 4 EC followed by 4 Pac , wasn't explained why the two different drugs.

Also having 15 x radiotherapy afterwards

x

Most ladies do seem to have both of those drugs. Or a combination of slightly different drugs. It's always worried me slightly that I only had 4x EC and nothing else. But I just have to trust my team and go with what they said !

Good luck with your treatments. For what it's worth (I know everyone is different) I had very minimal side effects with my EC. Felt slightly queasy for 20 mins the following morning of each cycle when I first woke up, but other than that I was fine. 

How are you Minty? How is your treatment? Hope all is going well. I have finished my radiotherapy 5 days continuing... still debating with my oncologist about chemo... in the meantime discovered i have CHEK2 mutation... let me know how are you ... hugs from Cambridge