Final study results!!!!!!!

Matic,

at this time, the Oncotype DX testing is controversial, but many studies seem to point to its validity.

Currently, there is a study out to determine what the cut-off numbers for the test should be.

It is the TailorX study.

My oncologist thinks that the idea that 17 for NO Chemo is being checked to see if that number can, infact, go higher.  They know that if it hits 30, chemo is highly recommended....but they don't know what to do with the 18-29.

My oncotypeDx was 20 and with the www.adjuvantonline.com software, my benefit with CMF showed 2%, so I was told it was OK to skip chemo...plus that lobular cancer, according to MD anderson, showed less responsive to chemo and more towards anti-hormonals.

I think the oncotypeDX is becoming standard of care.....if you can, I would send your mom's tumor sample for testing...I don't know how many years she is out from Dx and would it make a difference if it showed she needed it...things to consider as we don't always get the news we hope for...how well we all know this on this BB.

Best to you Matic! (still waiting for your pictures to be posted!!)

Hi, Grandma Wolf, and welcome to the boards.

Sorry to hear you've got a new primary. Wow--that's unusual to have an ER/PR negative ILC. I assume it's HER2 negative as well?

Did they tell you what the subtype of lobular it is? Most are classical, but I have pleomorphic, which is considered more aggressive.

Well, with hormonal therapy not being an option, like you said you are just left with chemo. But at Stage I, with clean nodes, it sounds like perhaps you could get away with not doing it. On the other hand, the factors that prompted you to do chemo with your Stage I IDC eight years ago might be the same factors that drive you to do chemo again.

What do the oncs say? Do they have a tumor board at your cancer center that can review your case? 

Ahhh... such a sigh of relief.  Thank you so much for your perspective Matic 23.   Like I said 95% first dx women do not get a second primary...and guess who was in the 5%, so the statistics aren't my friend, however the only thing I could see to reduce the risk by 4% was the chemo.  At 64 I was concerned I would be beating up on my self for no reason.  One Dr would not commit to an opinion, the decision was mine.  My second dr... urges me as you do for the chemo for the same reason.  I am told the Taxotere and Cyclophosphamid may be handled better than the Adriamycin / Cyclophosphamid, and truthfully, NASTY as that was, I did better than most.  I believe I will follow my instincts and your advice to decide the right way.

Much appreciation for your perspective...

Lini,

I think Matic does mean that lobular is hard to detect and so it is usually larger, which makes it a stage 2 or 3....

I am also a stage 1, but just  so...(tumor 1.8) and I feel like this was missed 5 or so years ago.  It was almost missed again...they said my mammogram was clean and perfect--not changes.  I just didn't feel it was OK..I won't bore you with my whole story, but thanks to a breast MRI, I was given a biopsy.  If there had been breast MRIs sooner, I would have maybe known even earlier.  With new technology, I think lobulars will be more common in stage 1.

Hi, Dakota. I'm doing CAFx6. I've had 3 rounds, have 3 to go. Then rads, tamoxifen. My tumor, although er/pr +, was large--2.7 cm, and of an aggressive subtype of lobular (although still grade 2, mitotic 1). If I were 30 years older, I think I'd have taken my chances with hormonal therapy. But given my age, I opted for chemo. I had three oncs tell me to do chemo, although there were differences of opinion on which regimen to use. I opted for a middle of the road strength chemo.

My mom is Stage IV bc, so mets are always on my mind. I'm also high risk for local recurrence, although I haven't had a bilat yet. Will rely on MRI's for now.  

I'm with you on the "gee, aren't I lucky in the statistics" dept. A very small percentage of bc is diagnosed in women under 40. Check. A very small percetage of bc diagnosed is lobular. Check. An even smaller percentage of those lobulars are pleomorphic. Check. Lucky me. So although on paper, the odds of developing mets for me are probably low because my nodes were clean, I'm not pleased with how things have gone so far. My tumor board decided I was relatively high risk for mets just b/c of the pleomorphic component of my lobular. So off I go to chemo...

I had one onc tell me he uses the 4% benefit of chemo as the starting point for saying the chemo benefit outweighs the risk. I agree with Matic that in your case, you need to to the chemo b/c you can't do HT. I think they give the TC combo in four rounds, so it would probably be pretty doable. 

Good luck and keep us posted on what you decide. 

Thank you Matic.  I was not recommended AIs, but I think that it's time for a second opinion from another onc.  This one has been nagging at me for a year and a half now. 

Whoa... this is something new.  In response to Lini57 on Oct 18th, you made the statement "I meant that ILC are generally diagnosed in stage 3, there are not many women diagnosed with stage 1 especially, thus losing their (ILCs) incoherent survival advantage."

Being under the impression, stage 1 was a desirable situation, I am confused that being stage 1 implies that I have lost a survival advantage.  Incoherent survival???

Please clarify...

regards

GrandMa Wolf 

Is Matic22 a doctor?  I'm just curious as he/she gives a lot of very specific advice?  I know I asked this question a long time ago, but I don't think it was ever answered. 

g

BTW I have re-registered, I couldnt get in under my old name, which was also "littleg" I was dx in 05 with ILC.

I think you have interpreted correctly, wallycat. 

I believe Matic is a med student specifically studying ILC because her mom was dx'd with it.

I'm sure she will come along and clarify.

Matic,  

Clarification for all of us Stage 1 ILC folks please. The word was corrected to read Inherent Survival, but the concept of Stage 1 losing their (ILCs) "inherent survival advantage" for being stage 1 is still confusing.   It is better to be stage 2 or 3 in terms of survival advantage?  Something is missing here. Are you trying to say that stage 1 is rare... and therefor the usual stage 3 loses it's inherent ILC advantage?  It is important to think what you are saying for it can be confusing...especially when you are saying what you would do for "your patients" and readers may misunderstand that you are not an Oncologist at this point in your career..

grandma W

Little -G,

I think your last question is an important one for all of us to keep in mind."Is Matic22 a doctor?  I'm just curious as he/she gives a lot of very specific advice? ". 

As you say, some very specific advice is given by some one who is still a medical student, who hasn't really started training as an Oncologist. While i certainly appreciate the information Matic gives, and the conversations around it, the type of specific recommendations should always be verified with your own doctor.

GW

Hi Matic,

I appreciate all the input you have given to us.

My lobular tumor was 2.5 cms. It had a mitosis rate of 1 but a pleomorphism of 3 and tubule formation of 3.

I had 4+ nodes  with extra nodal extension.

I had bilateral mastectomies and have been in chemo since April.

I have had Adriamycin, Abraxane and am currently on Xeloda.

What do you think about this and what have your studies shown as a result for such an aggressive approach to a lobular cancer?

Thank you in advance!!

Gina