Oncotype of 11 - Good?

My oncotype score was 10. I had a mastectomy- and no rads or chemo- just arimidex.

Whoo hoo, Colleen! I'm so happy for you!

Saw (my first) Onco. yesterday. She is w/ MSK and they do not grade tumors, and give all PLIC's a grade of 3  (? just to do "adjuvant online" ) I brought a lot of hard won literatue w/ me, and wanted to have a discussion of chemo regimens for ILC and PLIC, and she get's all ough and tells me she is a BC specialist, and if I do not want to listen to her, I can go to someone else. I should have left then, . But, alas, it's a full moon, had my period beiside being in pain -the recon. insert put in same day as Mastectomy - 11/25 was pumped up immed. to my reg 34 C, only high and hard as a rock, and aches like a bitch- Then she says I have a 50% chance of recurrence w/o Tx and says I need to do AC-T. I just fell apart, and held on to Peter until I could breathe.

I demanded an oncotype,( I had asked my surgeon to send it, she didn't think they were useful, but said she would e-mail this ONCO to send it, so as to get it started 2 wks, ago. Of course the Onco didn't send it, or rather , send me the consent, or discuss it pre- appointment.) So then the ONCO wants to do the oncotyping and says if I'm <11= no chemo; 11- 25 = enrollment in their CMF Tx TRIAL- (1/2 people get TAM only; 1/2 get CMF every 10 days for 3 mos then TAM), and if > 25 = AT-C........and the Onco #'s & 3 groups are about  25/55/20%. I''ve got more chance of no Tx at all than a chance of AT-C......What happened to you "must" do chemo at the beginning of the visit?   Of course, I was not processing at anywhere near my usual; she's telling hubby mostly.....and me, that she can "CURE" me. She ended our session by telling me to stay off the internet. Ha, I even thanked the bitch for the chance to be in her pissant trial.

I've been comletely falling apart for over 24 hrs (about my limit when first Dx'd) and decided there was no way I can take chemo, I just can't do it. EVERTHING I am made of says NO!! So, I really don't care what the 21 genes say. I'll try Tamox. that's it. And I immed. felt so much better. Until talking with my husband, who had previously said he would support whatever Tx decision I made, tells me I'm insane to not do chemo,,,apparently Tough Tiffany has him whipped, and even though I used to be coordinator of Gyn Oncology in the early '90's at a regional NYC Hosp- all my reading on the question of ever treating ILC w/ chemo at all, and what really make PLIC aggressive ( the usual 5cm+ tumor size at Dx, the ususl nodes +, the higer rate of mets at DX,that I have NONE of)...that I know nothing, to just listen to THE DOCTOR.  He refuses to read anything I have in the way of studies, even just the hihjloghted sentences. He says he refuses to become a cancer expert. Yeah, well, I refuse to have cancer, it's gone.

I went ballistic. Tore a door out of the frame and threw it. Nobody close, no kids in the house, and  him way down the hall behind me, but still....Then I cried like mad until the dog did too, and quieter until the cat licked my face........

There's an empty X-mas tree in the LR, and lights up outside, unlit....reflects my soul.

I go back to work (as a professional) Monday. This is not good.

The Oxford "cancer care" plan I opted into only covers MSK people- NYC area. Are they all toeing the party line, or does anyone do even slightly "tailored" therapy? Is there such a thing for me or anyone? I am so appallled at the paucity of helpful research. It just looks like people just want their names on as many "studies" as they can, even if it is just looking at presenting factors at presentation. Shit- you had 52 PLIC's for years- that's all you did was describe them at presentation. Where are they now 5years later when you publish? What happened to the < 3cm, node neg, PR/ER +'s ? Damn it, there are only <200 new PLIC's a year but we're an "orphan disease"- just called "lethal variant" and given adismal Dx" by some asshole DESCRIPTIVE "RESEARCHER", and left to be treated based on stats from the 180,000 IDC's, and 20,000 ILC's....."in general"  

Anybody know an MSK Onc. in NYC/LI who is not a bully? I talk real hard here, but I am fragile as all shit,

I sympathize with Diana's situation.  I am lucky enough to have a husband who is even more suspicious of chemotherapy than I am, but I've encountered some of the same attitudes on the part of oncologists. The first one I was sent to brushed aside my objections to an AC+T regimen with the standard "It won't hurt you if you don't already have a heart problem" nonsense, and dismissed the Oncotype DX text as merely something to satisfy the curiosity of women about  their recurrence score.

I was so annoyed by him that I asked my surgeon to arrange an appointment with another oncologist, and also requested the Oncotype DX text--the newer version for node positives. My BC is the director of the cancer center where i'm getting my treatment. She was quite willing to request the test. The second oncologist was more flexible and a better listener. He obviously bought into the line that AC+T was the "right" regimen, but was willing to acceot TC. My impression is that oncologists at cancer centers tend to adopt a "party line" and try to stay well within NCCN standards of treatment--if nothing else to avoid malpractice suits, If this results in worthless treatment of the odd cases that don't fit into the box, too bad for the odd cases.

After trying out yet another party-liner at the university medical center, I decided to go with Onco #2, who was at least flexible and willing to look at the material I was basing my argument against Adriamycin (for me) on.  In the meantime the Oncotype DX came back with a low risk score of 16, which for node positives indicates zero added benefit from chemotherapy. I'm now proceeding to start hormone therapy (strong ER+ score) and arrange for rads, since I lucked out on the reexciision and will get away with a lumpectomy--no sure thing with ILC.

I would recommend the Oncotype test, not as the sole basis for deciding on your treatment but as something to consider, which can (as in my case) reinforce what you already know. And it is essential to find an oncologist you can work with.  Onco #2 shook my hand at the end of our last appointment and told me I had made him rethink his views on chemotherapy. He didn't say I'd changed his mind, but at least I gave him somehting to think about, and he understands my desire to make the best decision possible when so little is known..

I'd have to say that the last three and a half months have been among the most stressful of my life. At the same time, things could always have been worse.  I could have put off the mammogram longer and had an even more serious problem to deal with. I could have passively taken the word of the first oncologist I met and endured a course of chemotherapy which might have done more harm than good. I was lucky enough to be referred to a BC surgeon who was experienced, who preferred a conservative approach if at all possible, and who encouraged me to become well informed. I much prefer to make decisions based on the best information I can get, rather than rely entirely on the judgment of others. We make decisions every day based on inadequate evidence. The main difference in the case of BC treatment is that the stakes are higher, but taking a shot in the dark is almost as commonplace as breathing.

At least one thing the first oncologist told Diana was correct: Diana needs to find another oncologist. I know from reading the posts on this board that many oncologists are more flexible than the one she encountered, and there should be no shortage of them in a large metropolitan area. My Onco #2 said during our last meeting that if you put ten oncologists in a room, no two of them will agree (whatever the official "party line" might be that they adopt in dealing with patients), so they are aware that there is no absolute truth in their area of specialization. Some of them may respond defensively to this incertitude by becoming more rigid, while others may have more tolerance for ambiguity and be more willing to work with their patients as individuals. It seems that Diana would be much more comfortable with the latter tiype.

Thanks Gitane-- for posting that article on Seidman  regarding AC- after I suggested him for a consult.  He may very well reccommend AC-- but all of MSK seems to be on that track with the "gold standard" (as it was described to me) .  but if you have to stick with MSk (not a terrible thing) going with a very seasoned oncologist is preferable-- you also dont want to travel to NYC for treatment so finding someone in LI is preferable.  

I recall a poster my2boys... in the Her2+ forum is using MSK Long Island -- they started with a AC T H reccomendation and then downgraded to TC H when she raised the cardio issues -- maybe private message her?? So there was an instance of an MSK oncologist with flexibility...

Hello and a big hug to Dianaon and any other ILC or PILC ladies on this board.  Some of the threads are old so I am hoping you are still around and doing well.  I need hope at this point that we rare types can survive and do well despite the dismal statistics.  I would like to hear what people did in terms of treatments conventional or otherwise to deal with this disease.  I will need to make a decide on a treatment plan soon and I can very much relate to your post--very similar situation and feelings.  How are you doing now?  What treatment did you end up doing?  Thanks for sharing.

It *would* be nice to hear from some people who made it through and went on with their lives, but I'm guessing many don't want to keep this as part of their ongoing identity as they move forward.

My oncotype score was a 14 and I chose not to have chemo (am choosing?) and am in rad therapy now (7/33 treatments).  However, this many years later than the start of this thread I had some very similar experiences with oncologists when deciding what to do after my dx and after my surgery pathology was revealed.  Many docs use the "old school" staging system and a decision tree that really isn't based on the research of the last 5-10 years to determine treatment and it is aggressive and sometimes harmful to patients without the expected benefits (like recommending chemo to people who probably can't benefit from it).  

We are all hoping we made the right decisions and the right treatments were offered to us.  I feel angry when I see that some docs simply aren't offering patient choices as that is really important for feeling you have SOME control over this process.

Hope

I am 5.5 years out and healthy as a horse... I had ILC-- lumpectomy, chemo radiation (onc score of 25 or 26-can't remember) so I was in the gray range at the time... I decided to do chemo and have never regretted it.... ILC is often slow growing-- I don't worry all that much about it coming back--just living my life.... 

I have my "last" oncology appointment in May--will go off the drugs---- I am SO excited!!!!! Even though I think I got wonderful care and loved everyone on my team,I am ready for this particular obligation to be over!!!!   

The way I made my treatment decisions was "what decision can I make that will give me the best shot of sleeping soundly every night?"   So far, so good....

Best of luck