Final study results!!!!!!!

Wow--hadn't checked this thread in a few days. Y'all have been busy!

Lindalou--thanks for the info on the abraxane and xeloda in a non-metastastic setting. Nosurrender--didn't mean to freak anyone out--it's just that my mom is Stage IV, and she didn't go on abraxane or xeloda until she had mets. I didn't realize those drugs were used in other instances. Good to know, thanks ladies.

Matic--re: Oncotype DX. Mine took about 2-3 weeks. My score was 18. I had a 2.7 cm pleomorphic ILC, ER/PR+ (50%/30%) HER2 -, grade 2, mitotic 1 tumor. SNB--0/4 nodes. Am doing CAFx6. 

HI, matic,

Thanks for your comments, and yes, I did understand them (I'm a health care provider.) Having been on Arimidex and Femara for the IDC, I agree that examestane is the choice, if indeed i must choose. I'll see my oncologist Tuesday for this discussion.

Keep up the good work. Seems you have a gift for both research AND people--a rare combo in our medical world at times.

Anne

Anne

Phew!!!       Matic, I am also glad you are back posting.  I see how so many of these women depend on your counsel.   Your response to my questions worried me that you would not return for them.

I also read your responses with interest, and now that I understand where they come from it helps put them in the proper perspective for me.

As I said, my prognositic indicators  stage 1, mitotic 1 no nodes, no vascular invasion, no necrosis are all good things, but the rarity of ILC  triple negative made a adjuvant chemo decision very hard for me.   A nationally noted Oncologist in my area recommended TC for me for the very reasons you mentioned.  I appreciated you were there to respond to me as well.

Surely now that we have resolved the recent misunderstanding, I will gladly jump back into the discussions where appropriate, but..... still I am direct and I do ask questions.  This is not meant as critisim. If this causes problems for anyone... I will of course back out.

warm regards

Grandma Wolf...aka Dakota

Welcome back GrandmaWolf!  Asking questions is what these forums are all about....so please don't hold back! 

P.S. you are correct that adjuvantonline is designed for medical professionals.  There is another similar site however that I heard recently recommended in another post here.  It allows access to anyone.  I think the statistical outcomes produced on that site are slightly more favorable than the ones on Adjuvantonline so it has now become my favorite!  It still is important to mention that no Breast Cancer Outcomes Calculator can account for each of our unique pathologies. They serve only to show the relationship of general tumor pathology and treatment protocols to predicted survival.

You can check it out here. 

 http://www.cancer-math.net/breastcancer/~With%20Therapy/

LindaLou

According to the calculator, I get an extra 80 days if I do Tamox. or AIs.  The benefit for me still seems to be really low, but I think that I'll still make an onc. appt. for extra, extra peace of mind. 

Thanks for the link LindaLou

Thanks, LindaLou -  I like this calculator better than adjuvantonline, too.  Not only did it give a better outlook, but I like that it separates out lobular and looks for exact tumor size rather than just a range. 

Whew...I am so happy we're all back on track here! I love the fact that you were able to understand each other's confusion - work through it and then move beyond it. Gma and matic - you're both great! Us ILC girls are an "elite"/rare group and it's great that we can stick together and help each other. Thanks for that!

matic -

Hi! I finally found out from my Onc...the pleomorphic of my path. was less than 10% - I think he and you have both said that's considered favorable. The mitosis was not noted on my path, but I got the impression that my Onc. thought that was due to the pleo having been low at 10% - . Does that sound right to you? Say hi to Mum! Hope all is well.

I was told at the time of discussing my path report that grading ILC is not necessary since the invasive cells are lazy and well organized (indian file?)  No mitosis was mentioned.  Is tumor grading and mitosis the same thing?  I do remember discussing that the current formula to grade/score tumors can not and should not apply to ILC or if this criteria is used, all ILC would be graded the same because of the lazy tumor.  Obviously something has changed in this grading system.  Ihad my tumor out in September of 04.  What did I miss or what do I need to ask at next oncology appointment.  I usually can get these docs angry by my questioning.  I clearly get the impression of them thinking "How dare you question me"  I have been able to hold my own and try very hard to be non threatening.

Matic,

I have been a silent reader of all the ILC discussions until you told me about your mom's prognosis.

I had a bilateral mastectomy, sentinel node biopsy with 6 nodes removed 2 tested positive. One .2mm the other 2 mm. The original tumor was 2.5 cm. ER/PR+ HER- staged at 2b. Mitotic: 1 tumor grade 2.   .3cm clear margins. There was NED on the left breast that was removed.. call it collateral damage.

The onc put me on Dose Dense AC then will proceed with Taxol ( despite the outcome of the research showing that Taxol might not do much for HER- gals, he feels I need to do it cause of the + nodes)

Now I am in a bind here. They are pretty much leaving it up to me to:

- go in an remove more nodes - WHICH IREALLY DO NOT WANT !

- Have full axil rads after chemo

I will be consulting some specialists but wanted to see  what your mom would be doing since we seem to be almost in the same boat with her. I will be sending my path slides out too.. anything special you would suggest that I ask about ?

I really want to keep my lymph nodes, but my priority is to wipe this out once and for all too..

Presently I have completed 3 out of the 4 AC's.

Thanks !

Nash, thank you.  I could not for the life of me remember the name Bloom Richardson confused it with prostate Gleason score.  For sure the oncologist said the only scale they believe in is Bloom Richardson and lobulars can not and would not be able to be scaled with that system.  I also remember reading about Nottingham.  I really have put a lot of this out of my mind so need a refresher course once in awhile.  I am ambivalent on information and how it relates to my personal circumstances.  I question whether I could or would change anything at this point anyway.  I did one of those therapy things recently and kind of forgot that this even affected my expected age of longevity.  I was really surprised this knocked off quite a few years.  Originally my question to the doctors was how long do I have to live.  Now it's more like what me? No way!  I have clearly cleaned up my act and am living a far more healthy life style and shoot, it has to catch up with me.  Since my friends and family are exhausted trying to keep up, I think I have cards on my side.  I do go to a hospital that considers itself tops in it's field.  I am glad that they think so but perusing even these threads makes me very skeptical.  Again it leads to some lively discussions at times of visits.  I even print some of the info and have had the answer of "I don't know where that info came from but I doubt it's validity"  I guess it does not endear me to my medical team but I do appreciate some defensive posture instead of discounting these issues,

Thanks, Gina.  I decided just today that I'm not going to let it bug me so much anymore.  It was invasive, but only 4mm.  My bilateral was considered "overkill" by some, so I'm going to relax and quit stressing over it.  20 years will put me at almost 70.  That's cool!!  I'll start worrying again then.  LOL!!

Hey Grandma - I love the picture. Just wondering if it is you????

Connie--pleomorphic ILC is a subtype of ILC and is different than the nuclear pleomorphism grade. Not all path labs distinguish the subtype of ILC. I had two labs look at my slides, and only one (the university hospital) identified the pleomorhpic ILC. The other lab just called it ILC.

So, yes, it would be on the path report, and mine was under "diagnosis".  

Of course, that doesn't really answer the question of whether you have classical or pleomorphic. There'd be no way to know other than have the slides reviewed. Since you're grade 3, there's a good possiblity you are pleomorphic. However, unless it changes the course of treatment, it's probably not worth pursuing.

hello matic22

i have ki-67 data (less then 5%)

hr -  score 0 (0-3)

i dident get grade data.

astrogen>75%, progestron>75%.

tomur 2cm ILC classical varian.

1)what  grade no. to fill on adjuvantonline

2)in the SLN 1 micrometastasis <0.5mm (is it involvment nodes - 12 nodes are clean after second surgary of axillary nodes)

thank you

PeggyDixon, to answer your question if that was me in the picture..

Yep Peg, that is me on my mechanical soulmate of almost 20 years.   I have been up through the mountains of NewHampshire,down the twisty roads of West Virginia, the beltway into DC...you name it.

When i was on chemo eight years ago feeling like you know what, jumping on that bike and riding like the wind was the only thing that made me feel better.  In fact, with the black bike, wearing black leather, sunglass's, big skull earrings and my chemo bald head, I looked like something out of "Natural Born Killers".   I got respect at the checkout counters for sure.

Right now I am too preoccupied with my current situation... just dx second primary in opposite with Lobular...only to find highly suspicious areas on the original breast.   Folks were always worried I'd kill myself on a motorcycle... not as likely to kill me as these old boobs, I think.

How is your situation currently.  Do you notice a different approach to the treatment information talked about on this board and what you experience with the medical community in Canada?

PS: am I the only ditsy one who gets lost on getting around in these conversations? I try to respond to a specific posting and usually go round in circles to get where I want to be....duh.