I hesitate to post this but am concerned. I found this research by accident today which seems to state that those with lobular cancer are less likely to be helped by tamoxifen:
cancerres.aacrjournals.org/content/68/21/8908.full.pdf+html
I also found this which suggests that ILC does have a good response to hormone treatment:
ncbi.nlm.nih.gov/pubmed/18035533
I suppose my question is how would we know if tamoxifen is working?
Has anyone specifically discussed their lobular cancer with regard to tamoxifen with their Onc? I’m not seeing mine now until November.
Elinda x
Hi Elinda, I saw some discussion on the subject on the breastcancer.org site, when mentioned to onc at beginning of the year he just said tamoxifen was the gold standard treatment for pre menopausal ER+ women regardless of having IDC or ILC. Will be interested to see what others say. So far, I have been told by my team my treatment for ILC is the same as if it had been IDC. x
Thanks for the links Elinda, I think I will definitely raise this with my oncologist when I see her next. It won’t be for a while as I start rads on Monday and won’t see her until after that’s finished but I’ll print off copies to take with me.
Nymeria x
This is very interesting (and worrying!!), thanks Elinda.
I have ILC and am on tamoxifen as am PR+8 and ER+8. Will ask my onc about it when I next see him, though I think that might be in a few months time.
Would be interested to hear what other people’s oncs have to say about it.
Gill
I’m also ER+ 8 and PR+ 8. I’m thinking its not something to panic about but I would like to raise with my Onc and would be wonderful if some of you do too and we can exchange responses.
Tina - when you mentioned to your Onc was he aware of the research?
Forgot to say that I have e-mailed the lead researcher in that first piece to find out what they recommend/further info etc. Don’t know if I’ll get a response but worth a try.
Hi Elinda
I am going to try to get my oncs opinion on this next week i am off Tamox at the moment and they have just given me effexor to take before i start it again. I couldn’t really understand totally what the research was saying. Is it saying they found a lot of ILC were not really affected by tamoxifen?
Thank you
Jaynex
Hi Jayne - it’s not the easiest article to understand by a long way. My interpretation (but I could be wrong) is that they are saying that:
the features of lobular cancer are very different from those of ductal which is why they are looking at the particular mechanisms for resistance in ILC.
Overall a higher percentage of lobular tumours are ER+/PR+ than ductal.
REgardless of tumour type, tamoxifen resistance is a ‘pervasive clinic problem’. One third of breast tumours don’t respond and the remaining 70% can potentially stop responding at some point.
The research is mixed as to whether ILC patients have a smaller or greater risk of mortality after antioestrogen treatment.
I’m not sure on reading this again that is saying ILC is more likely to have resistance at all although I have read that as an interpretation of this study - possibly scaremongering.
It might be good to ask your Onc about tamoxifen resistance and see what he says. I expect s/he will say that statistically we’re better off with tamoxifen than without. I don’t what the difference is between those on tamoxifen as opposed to those postmenopausal women on aromatase inhibitors. I suppose it would be impossible to make a direct comparison.
I’m going to ask my Onc if there is any test to check tamoxifen resistance.
Elinda x
Thanks Elinda it’s really good to have someone to read these things that one was really hard to get my head around. I will ask and see what they say. If only things were black and white with cancer it’s the uncertainty that gets me. Hopefully they will know more in the near future.
Thank you again will let you know what he says, he is really involved in research so hopefully will have some good feedback
Jaynexx
That would be great Jayne thank you.
I know what you mean about the uncertainty, that’s what I struggle with too. I never knew there were so many grey areas in cancer treatment.
take care, elinda x
No problem
I know and the more you look into it the more grey it becomes. I keep thinking i’m not going to look anymore and then can’t help myself.
xx
Elinda, when I mentioned my concerns re ILC and tamoxifen, he just said that despite all ongoing research tamoxifen was without question the best proven treatment available. Didn’t specifically ask him if he had read that article but might ask again! Is tamoxifen resistance the same as tamoxifen metabolism (cyp2d6)? I suppose none of us really know how well tamoxifen works for us. I can only hope it’s doing it’s job!
No idea on that one Tina. I might try and look into a bit more. I’ll post if I find anything. Elinda x
Hi, My visit to the onc. informed me that I have Grade 3 ILC and have been told I will require tamoxifen. The worrying thing for me is I have been given the option of chemo with only a 3% improvement and I ask myself is it worth the trauma. Can anyone reassure me that the chemo is the route to go down. Has anyone rejected chemo?
Hi Sultana
I would suggest starting a separate thread on that to open it out to all women who’ve had cancer. I know there’s been discussion of whether or not to go ahead with chemo before and you may find there’s quite a few woman who could help.
Chemo was always on the cards for me. I think the choices we have to make in our individual cancer treatments are so difficult. Elinda x
Hi Sultana
Can’t help on the decision making but can tell you about my experience. I’ve just finishe 6 FEC.
Because I asked for mx AFTER chemo i could see the chemo working. It has gone from being a square-shaped, nipple-turnin, Quasismodo style boob to a normal looking one. It still has to go obviously, but actually being able to see what the chemo was able to do was/is very reassuring. I think my atitude is to throw everything at it so that in the future i will never have that ‘What if…If only’ thing going on.
- I’ve got the mx, rads and Tam to look forward to and i’ve questioned every step and asked for 2nd opinions all the way, purely and simply to make sure that i’m happy with what’s going on and, again, to make sure i regret nothing in the future.
Best of luck x
Thanks to all of you who responded. I have spoken to the Breast Cancer Nurse and I appear to be borderline for chemo - so I have alot of Good luck to you all on your journey.
xx
Sorry for the late reply. Spoke to onc this week and he says he hasn’t heard of that and that one trial isn’t enough evidence to make a difference.
About dichloroacetate (DCA) - I did take ask him about this drug in Canada that is supposed to cure cancer and he hadn’t heard of that either but was very interested when he looked it up. Said he would get back to me on it. Not sure if you have heard of it?
xx
Thanks for posting what your Onc said.
Funny enough I have read about dichloracetate this afternoon! Spooky coincidence. I’ll post more tomorrow or Tues when I’ve got a bit more time. Elinda x
Excellent look forward to reading it. Does look pretty interesting.xx