ILC vs other breast cancers

I am very annoyed by my Her2+ status.  1% of ILC is Her2+.  I almost feel like its a mistake and they are throwing the most aggressive treatment they can at it.  I am defintiely being treated like a IDC triple positive. Had I not been Her2+ I would have done what you did. Had the oncotype, and with a low score skipped chemo and moved on to hormonal therapy. I will most likely pass on radiation unless it really bumps my survival up more than a couple of % points. 

ccjj - I agree with dixiebell that it would be good to have the Mayo pathologists run your pathology themselves. Did they do the FISH test on it? My initial HER2neu came back inconclusive so they ran the FISH test on it. Good luck and glad you're getting to Mayo for a second opinion.

Dixiebell,

I have been on tamox since May, no terrible SEs, all not bad all in all.....a few things I noticed...waking up hot at night, not sweating though thank goodness...did get a few leg / foot cramps... I take mine before bed.

As it is my only weapon of choice...I'll stick with it  

I have a small embroidery business, It kept me busy while I was taking Chemo and radiation.

I do a lot of blankets for my church for someone who is sick or just to give encouragement.  I have them on my face book page.  I generally put a name or whatever some is interested in

I also do work for a local gift shop.  I would love to share them with you

Nancy

nancy1946, I am on Femara which is the alternative option to Arimidex. My onc said it was immaterial which of the two he prescribed for me.  I take the name brand, not generic as I read on another thread that some ladies seem to have more problems with the generic.  Cost is the same for me in Australia.

If you look at the treatment and side effects info on this site there are comparison tables of the side effects of all the hormonal drugs.  Not everyone gets all the possible side effects. The only SEs I have are hot flashes and mild joint pain on getting moving.

Are you sure your tiredness is a result of the Arimidex and not something else?  I suggest you consider other possible reasons for your tiredness. 

I assume your onc will be recommending that you start another drug? I think it is worth giving Femara a go.  I have read good reviews about its efficacy. cp418 posted one yesterday.

This is a different question and I have reserched this and I read my diagnosis, What is the difference between stage and grade,My breast cancer is ILC grade 3, I had seven out of eleven lymph nodes

positive for cancer. I keep reading that stage and grade are different, can someone explain this to me.

I was told that my left breast was , the way that my doctor described it, rotten, But they didn't put a stage to it, only a grade

nancyj I also had positive lymph nodes and nothing was picking up my tumors (both in my left breast). mammo and US in Feb showed my usual- dense cystic breasts. MRI in Sep didn't either. Pretty scary.



I hope this post finds you feeling a bit better.



Would you mind if I ask what treatment you received?



I am to begin AC x4 then taxol x12 then radiation. I know each of us is unique, but it seems to me that many ladies with ILC have a different tx.



Thank you and hugs-Laura

Racy not only do I not mind, but greatly appreciate what you share. Reading different threads this does seem the more common treatment. I have an appt with the onc tomorrow and wanted to discuss this option. It may also have something to do with my more extension lymph involvement, and will have to keep that in mind. (1st onc also advised AC T but I wasn't armed with all my questions at that appt. He did at least talk about taxotere, but as an alternate to the taxol.



Thanks! And hope you're doing and feeling well!



Laura

Dreaming thank you for your response. How wonderful that you are 20 years post dx!



I am not adverse to receiving chemo- I just want to follow the best protocol for my diagnosis, as we all do. I still feel there are so many unknowns with ILC, and I have a few more questions for the oncologist.



So much important and invaluable information has been shared by so many wonderful ladies.



I can never thank you all enough.



Laura

Thank you Ellie & momand2kids!



I want to be as prepared and informed as I can be.



Be well and I will update soon.



Laura

Hi, hope you don't mind if I jump in.  My course of treatment was a little different, so I thought I would share it with you. I was stage 2, grade 2, ILC.  I had 3 rounds of FEC followed by 3 rounds of Taxotere, and then UMX (clear margins, no nodes).  No rads. 

Gitane I did ask the onc about the trial you mentioned and she was not terribly receptive.



Also no oncotype was done with my node involvement.



I hate to feel helpless in my decision making regarding my health care. I have never just blindly followed the advice of any Drs. Sometimes that has backfired on me. I am quite outspoken when it comes to my care or when they were younger my children's care. But now, so many decisions had to be made so quickly. And about something very serious. There's no room for mistakes.



Sigh.



Laura

Gabby thank you for sharing this link.



It does appear that my onc recommendation falls within many of the established guidelines.



I'm sure there are always other factors that may alter treatment for others, even with a similar diagnosis.



Gonna have some faith and get started on Thursday,



I see you're almost a year out. I hope you're feeling really well!



Laura

seacretgardn - Hope everything goes well for you on Thursday. I'll be thinking of you. Thursday will coincidentally be the 1-year anniversary of the mammogram that flagged something suspicious and started the ball rolling for my diagnosis and treatment. 

I'm doing well and have started to get my life back. Thanks for asking. 

All the best, Joan