Pleomorphic ILC

Losing my hair was one of the hardest parts of chemo for me. Big ol' hugs to you--I know it sucks.

Donspink and Gitane -

Thanks for the kind thoughts.  I'm getting use to my "new" look and the rash on my head is finallyclearing up!  I am normally a "glass is half full" type of girl but I'll admit the hair loss took a little wind out of my sail.  I normally just need time to "process" things and then I'm good to go ..... really what choice do I have?  I have an MRI and  #7 taxol infusion this Wednesday.  I'm anticipating everything will go well as I've had few SE so far and the ones I have had are more of a inconvience than a problem and they have been short lived. 

Gitane - the 75% tumor size reduction was after both taxol and AC.  I know the researchers are glad to have me in their trial since I'm such an "oddity" but if it can help me and others I'm all for the trial.

Rover

Gitane -

When I asked my onco. if he was really, really, reallysure I was a triple neg. he said he was but when the surgery is complete he said he wouldn't be surprised if I was IDC or a mixture of both ...... the tissue is the issue.  Oncol. said the treatment would be the same regardless if I was ILC or IDC.  I've gotten use to being "different" and really don't dwell on the triple neg. aspect.  Maybe I'm naive but I'm believing this treatment plan is going to work until proven otherwise.  I had an MRI last week and should receive the results tomorrow.  I guess I'll find out soon enough.

Preliminary test results are in ...... preliminary meaning the Oncol. Nurse gave me the quick and dirty info and the Oncol. will go over the results more thoroughly next Monday at our next appointment...... drum roll, please ........ the current MRI showed both my tumor and my lymph nodes were shrinking - yahoo!

Went to the Oncol. today ...... bad news ..... I'm not as special as I thought I was.  When I was originally diagnosed by a local doctor the pathology report was also done locally (or at least the initial tests).  When I transferred to the SCCA they also did a pathology report.  I asked my doc to review the SCCA report with me today and guess what I don't have ILC, I have IDC ..... which makes perfect sense.  ILC is almost always ER +/PR + ...... I'm a triple negative.  ILC is usually stage 1 ..... I'm stage 3.  For a while I felt like a walking science project because I had so many unusual elements as it turns out I'm quite common.  Doc also reviewed my MRI results and my tumor has shrunk by 70% - yahoo!

Even though in theory I'm IDC ....... I'm still a PILC at heart.

I have requested a copy of the SCCA path report ..... I didn't know it existed until last week.  I assumed they were using the one from Hospital A - silly me.  When I read the notes from my first monthly drs. visit I noted a KI-67 value which I hadn't seen on hospital A's report so when I asked my doc about the value and where it came from. He pulled up the SCCA path report and that's when I noticed the IDC diagnosis.  I did see where they did e-cahedrin staining although I don't know what was indicated.  Of course, I can't get a copy of the report unless I go through the release procedures ..... so I should see it in a couple of weeks. 

When I had my initial consultant w/ him there was no SCCA path. report yet so Hospital A's was used.  I'm sure that is where his original data came from for his reports and has either never been updated or he has never read the SCCA path report.  I'd like to believe it has never updated but I'm jaded.  Every meeting I have had with him we have discussed my ILC and 3N status.  So there has been ample opportunity to discuss the IDC diagnosis.  I know from his prespective it doesn't matter if it's IDC or ILC the treatment plan is the same but it matters to me.

The most important thing is the treatment plan is working but the sloppy documentation frustrates me.  

Thanks ladies for the words of support.  Guess I'm not alone on with the misdiagnosis and the important thing is the treatment is working.  So it's all good.

Rovergirl, the path with the IDC/neg e-cadherin staining sounds like a typo. It would be very rare for an IDC tumor to have lost e-cadherin, whereas I think it's univerally true for ILC tumors. I know in my path reports and onc notes they were constantly putting IDC down when they meant ILC. And in your case, since you're triple negative grade 3, which is unusual for ILC, it probably makes them think IDC when they're dictating notes. 

I am surprised, though, that Hospital A didn't do the e-cadherin staining when can be tricky to tell PILC from IDC.  

At any rate, I'll be interested in what the onc has to say at your next appointment about the whole thing. Congrats on finishing up the Taxol portion of chemo, and good luck with all the scans. 

Rovergirl--LOL, total identity crisis! I was going to ask you about your AC--15 infusions is a whole bunch. Whew! How often will you be getting them? Are they splitting up the doses into weekly infusions, or giving you dose dense every 2 weeks or what?

Will the AC be dosed three weeks on/one week off, or 15 weeks straight? A lot of chemos are done 3 on, one off, but not AC, so it will be interesting what the trial ends up showing with different dosing. I wonder if the nausea will be milder with smaller, more frequent doses.

And "ugh" is right on the 27 weeks of chemo. You should get a medal for that or something.