Pleomorphic ILC

Rovergirl

Had my head shaved on Tuesday and cried through the whole process.  I thought I was mentally prepared for it but am finding out I'm really not.  Really feel like the cancer patient now - can't hide the cancer once the hair is gone.  I know I'll get over this just not today.

nash

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

Gitane

Oh Rovergirl, I know, I know.  I remember looking in the mirror at that tired, bald, frightened person and saying out loud, "Who are you?"  I hear you loud and clear.  There is no logic, it's just hair after all, but our emotions are not logical at all, especially when chemo is involved.  Feel my hug through cyber space, and I will feel your tears.  Love, Gitane

Gitane

Hi Rovergirl,  How are you doing?  Are you getting along O.K. after taking the Sunitinib?  I used your links to read up on it.  It sounds great.  If it is able to shrink tumors 75% before you even start AC that's amazing.  Weekly treatment sounds like the way to go, also.  You really are getting wonderful care.  I hope it isn't too hard on you.  It's traumatic getting a bc diagnosis, and the treatment is traumatic, also.  I wept and slept a lot during my treatments.  The infusion nurse told me that the drugs that accompany the treatments, the drugs that help with nausea, fatigue, etc. make us feel vulnerable and weak, on top of the treatments themselves. My husband drug me, that is I went willingly but was a lump, to the beach and sleeping on the beach seemed better than sleeping at home during the day.  My heart goes out to you as you go through treatment.  We're thinking of you and holding you hand, even if you can't feel it.

donspink

Hi there Rovergirl, I hope you are feeling ok, I know it is all pretty dauntng but you will get there, I am sending you lots of nice pink thoughts and you must do the same.  I will be starting my treatment after my next lot of surgery, and the specialist has said I won't be sick, I am very relieved about that.  This whole thing is such a major interruption to normal life.  All the best.

Rovergirl

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

Rovergirl, speaking of triple negative,  I described above how I got my Oncotype DX score back showing I have practically no PR or ER.  There is so little receptor protein/mRNA there that I am for all intents and purposes a triple neg. also and didn't know it.  Makes me wonder what the ...... kind of BC I have anyway.  Hard to be feeling so different from the others in so many ways. I haven't had a chance to discuss any of this with my onc,  should be interesting to hear what he says.

Rovergirl

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.

Gitane

Rover, I can hear you now, asking the Onc if he's "really, really..."?  Been there! It will be very interesting to find out about the MRI results. Those state of the art treatments will have done their work.  We all owe you big time for being in a trial.  It's fantastic that you are part of it.  You are not naive, you are hopeful and confident.  Great character traits to encourage and cultivate.  

Rovergirl

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!

nash

Yay, Rovergirl! Great news!

Gitane

Oh Rovergirl, yes!!! Has to be a fanatstic feeling knowing that the treatments are working. I'm cheering over here! 

Gitane

Rovergirl,  Did you meet with your Onc today?  What's the word on the MRI?  Is all going well?  Thinking about you and hoping all is well.

Gitane 

Rovergirl

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!

Gitane

Rovergirl,  First of all, the tumor is shrinking.  No words to describe that, it's the best!  I'm so happy for you.   How did they ever get mixed up with the IDC ILC stuff?  Being a walking science project myself, I can sympathize.  I'm glad the doctor was able to explain and clear that up.  Just more evidence that these major cancer centers know what they're doing. Aren't the MRIs amazing?  We can see what's going on inside of us in ways people could never do before.  How are you feeling?  I hope the treatments aren't too hard on you.  Even though you don't officially belong among us PILCs, unofficially you belong because....well, just because.  Please keep in touch.  I'll be watching these boards to see how you're doing.

Rovergirl

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

Rovergirl

Dr. Overachiever just fell off his pedestal today ...... I read his notes from my Monday appointment during my infusion today and he stated I was PILC ....... I remember reviewing the SCCA pathology report with him where it stated I was IDC ...... there were several inaccuracies in his notes I had to check and may sure my name was on the top of it....what in the heck happened?? 

I was already struggling with new IDC diagnosis ......although it possible to misdiagnose ILC for IDC but from PILC to IDC??  What's up with that?  I am having a cancer identity crisis - science project or commoner?

Gitane

Welcome to major confusion.  As if BC weren't confusing enough anyway.  Did your doctor dictate the notes after meeting with you?  Looks like it's time to get that path report out and go over it with him again.  Maybe even have the slides sent out somewhere for another look see and have the hormone receptors done again if it's lobular.  I'd be curious.

nash

Rovergirl, from what I've read, PILC can mimic IDC pathologically, and they have to do the e-cahedrin staining to be able to differentiate the two. Does your path report say anything about the staining?

It is possible for PILC to be triple negative, although rare, so it's not outside the realm of possibility. 

Also, my surgical path said IDC and DCIS in several places, when in reality I have PILC and PLCIS. I had to get it corrected. Even my onc's notes say IDC in a few spots. It's just sloppy dictation. Since the majority of women have IDC, that's just what the medical professionals get used to saying and writing.  

Rovergirl

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.  

IllinoisNancy

empty

Rovergirl

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

I received all my medical records from SCCA ..... what an eye opener.... the things my doctor never told me......we'll have lots to talk about at our next appointment.  The pathology report states IDC diagnosis w/ a negative e-cadherin staining.  Hospital A did not do a e-cadherin stain when they diagnosed me as P-ILC.  So I'm still not sure what this means.....ILC ... IDC....???

I will complete my last taxol infusion this Wednesday - yahoo!!  But I won't get too excited as I know I have 15 AC infusions starting in Sept. but it's still good to complete the first leg of chemo.  Also will have another round of imaging tests - PET-Scan, MRI, and Muga.  Life as a clinical trial guinea pig.

Rover

nash

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

I am going to ask for the path. report to be reviewed and retested because something just ain't right.   Although I share characteristics for both ILC and IDC ..... still having a cancer identity crisis.

nash

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?

Rovergirl

The AC infusions are weekly and are part of the clinical trial I am participating in when it is all said and done I will have completed 27 weeks of chemo - ugh!

nash

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. 

Rovergirl

The trial changed the order of the drugs - weekly taxol for 12 weeks and then AC weekly for 15 weeks.  The SE w/ the taxol were accummulative I felt great until about week #8 and that's when things started to change.   The biggest SE being fingernail problems but overall taxol has been quite tolerable.  So I'm assuming AC will be the same ..... things will start out slow and more SE will develop as time goes on.  I'm hoping for the best as I hear AC is worse than taxol.  All in the name of science.......

Gitane

Hi Rovergirl, I just saw your post.  It is so great that the Taxol is behind you now.  I hope those scans show that it continues to work well.  

Are they giving you a short chemo break before the weekly AC starts?  You sure deserve one.  The chemo SEs do build up.  For me it was the fatigue that kept building.  I slept and slept.   I agree with Nash, you are a pioneer and a medal is in order.  

So the pathology mystery marches on.  The medical records do make interesting reading.  E-cad testing that is negative does usually indicate lobular.  I wonder if that mystery will ever be solved for you. Seems like they should be able to give you some clarification at least.  

I think for the most part we are all science experiments when it comes to breast cancer.  The more I read on this bc board the more I feel that way.  It's not just that our bc is so different from others.  It's that bc itself seems to be such a huge, complicated puzzle and has been so for so long.

Anyway,  the treatments march on.  Today, I got my first Zometa infusion.  I don't have bone mets, but my oncologist suggested I get it every 6 months preventatively.  After googling I've learned doctors have mixed opinions about it. 

 I hope you are recovering from your Taxol related SEs and get great scans.  Please keep in touch.  I'm cheering for you!