Pleomorphic LCIS

Cathy-- negative nodes--that's fantastic news !!!!! I'll be praying you won't have to have chemo or radiation.  Have they talked about possibly tamoxifen for you? (I don't know if I ever told you, my mom had ILC with negative nodes years ago-----lumpectomy, rads and tamoxifen--and is now a survivor of over 23 years without a recurrence. I've read ILC responds very well to hormonal treatment). Do you have to keep making that long trip for your reconstruction or are you going to have it done closer to home?

Anne

Cathy - Nothing in the nodes!!!  Whoo-hoooooo!!  I'm so happy for you!  I'm so glad that you got it all before it had a chance to spread. Did they tell you that your margins were clear too?

FYI - my med onc said that if I had a BMX, and the nodes were clear, she would not recommend chemo, rads, or tamoxifen.  Of course, that's for a PLCIS diagnosis - I don't know if it changes for an ILC diagnosis.  Hope not!  On to recon!

OmahaGirl - repeat after me: "Long Island is not warm."  It is warmer than NE, but it is not warm. Virginia is perfect weather for me.  Mostly warm, but the occasional snowstorm to remind you that is is truly winter.  And hot in the summer, but not like Florida hot.  Hey - it's your turn for good results.  I'll get mine after my BMX next week.

Line up, ladies, a round of good news all around!  How's that sound?

Chris

I second the motion!!!!!!!! Good News should be on the way for all of us because we deserve it darn it all..

Okay, LI is not warm, and tomorrow it is expected to sleet and snow, but Omaha has like 6 feet of frozen snow and has been below freezing since Thanksgiving, and I still want to go home (:

Minnesota that is great news!!!!!  Here's hoping we are off to a good start here and continue with the good news.

How soon will you be able to have the PM? I had someone ask me how I felt now that I know they only found fibrocystic changes on the left side, and I can tell you that I am 100% sure that I did the right thing for me.  I would have had to start already my 6 month follow up on that breast in March, for a BIRAD 3 that was seen.  I can't even begin to imagine to start doing this all over again.I had my first biopsy done last March.  NO THANKS. 

Cathy

Cathy

Its going to be a great year....biopsy results are in and they are B9! My Dr. is presenting my case at a meeting to see what others would recommend. I laughingly said I would like to be a fly on the wall because I want to know if anyone would say "She should have a BMX" she said she would tell me if anyone does.

Thanks for all the well wishes,

Linda 

Cathy ~ I agree with you ~  everyone here means the world to me and I depend on reading and hearing others hints , ideas,knowledge, and just the compassion that is running through all these threads.  I sign on in hopes that one of my friends has posted something.  I just love it here!!!

warmly,

Balsie

Ladies - I so agree with you that you have become like family.  I find that if I skip a day checking in on you all, I miss you!  I don't know how I would have made it through this mess without being able to vent, and listen to your stories.  You have given me courage, as well as quite a few laughs.  My DH is always patient when he sees that I'm on the computer, 'cause he knows that if I'm "talking" to you, I'm not going to be venting at him. LOL.

Linda - FABULOUS NEWS!  I am looking forward to hearing what your doctor comes up with.  Ninny's?? New one on me - and too funny!

Well, it's off to my pre-op appointment tomorrow.  BMX on Monday. Ready to be done.

Cornellalum, good luck with your preop tomorrow.  I know it is a difficult and agonizing decision for anyone to have to make about having a mastectomy and it is very personal. I can only tell you from my experience, once I made the decision I have never 2nd guessed myself and have never looked back.    It is also such a relief for me to be on the other side of it.  Also the recovery has been much better than I had expected.  However, I did not have immediate reconstruction either so, likely that has made a big difference.  You will be in my thoughts.

Cathy

Cathy and LInda WAHOOOOOOO!!!!!! What great news. I am so happy for both of you B9 results are great. Cathy you must be so relieved to be past all of this. I am so pleased things worked out for you. Good luck with your reconstruction.

Cornellalum good luck with your surgery.

Stephanie

Hi Ladies

I met with the medical oncologist and he would like me to enroll in the TailorX clinical trial and have my tumor analysed for 21 different genes.  He expalined that although the 2 invasive components that they had found in previous surgery was small, sometimes a small tumor can be agressive.  The TailorX or Oncotype test, helps to decide if chemo is the best way to treat me personally or not.  Everybody's breast cancer is so different and this is one way to analyse mine specifically. It will take approx. 3 weeks to get the results, as the tumor is sent from Toronto to my home city, and then it is sent to California.  That is one trip I would have like to go on!           It has got to be warmer than Canada. That must be one huge lab in California if all of these tests are going there.

 The test will score out of 100, with a score 11 and under, not requiring chemo, a score higher than 25 would require chemo.  A score 11-25 would be considered the grey area, and you are randomized, to either chemo and hormone therapy or hormone therapy alone. Basically by flip of a coin.  OMG, how do you do something so serious as chemo by flip of a coin?  Hopefully it comes back under 11!!!!!  From what I understand, Canadians can either pay for the test on their own and not go into the trial, but would cost approx. $3,600.00.

I asked my oncologist how many other women they have in my city with PLCIS or PILC and he said I was the first.  Although he said since me, they have diagnosed a couple of other women with PLCIS, so it would appear as though the word is out, and this will be seen more often.  What he did say though when I asked about how concerned I should be about the pleomorphic invasive lobular component to this. He said they are not as concerned about that, as they are when they see PLCIS, because that they believe tends to be a stronger indicator that it is going to develop into invasive. Stronger indicator than LCIS or DCIS. So in my case the theory was in fact correct, because they did find the two areas of invasive. I am not saying that to scare anybody, but to give information about what others are thinking of PLCIS.

Cathy

OmahaGirl - Since I am going for my BMX on Monday, would it be helpful to have my doctor contact yours?  Then they can be sure that your doctor gets whatever PLCIS tissue she needs, in whatever form she needs it.  Just a thought.  If you think so, just PM me your doctor's info, and I'll pass it along.  They might already know each other, since it seems like my doctor knows lots of breast cancer surgeons from symposiums and conferences.

Cathy - it sounds like your oncologist has a solid plan for moving forward.  I have to agree with you, coin flips are decidedly unscientific, but to be honest, lots of this bc decision-making falls in that category, doesn't it?  I appreciate your letting us know what your doctor's opinion is of PLCIS.  It certainly reinforces what I have found, and gives me one more reason to feel solid about my decision to have a BMX.  I am praying that we have gotten to it in time, before it morphs into invasive.

It is very interesting that they will be looking at genes in your tumor. Are they trying to find other mutations like BRCA?  Or are they trying to tie a specific gene to the agressiveness of the tumor?  My cousins said that both their oncologists believe that we have some gene mutation going on in our family because of the number of us with bc, but since one cousin tested negative for BRCA, we know it's not that gene.  It would be very cool if they could identify more genetic mutations that cause bc, wouldn't it?  We would be able to make much more informed decisions then.

Cornellalum you will be in my thoughts and prayers on Monday (and before) Leading up to the big day is just as difficult.

 I'm sure you will feel a huge sense of relief once you have this on the other side.  I do not regret for one second my decision.

Take Care

Cathy

Ladies - thanks so much for all your support.  I'm ready to go.  Gonna try to get some sleep tonight. (yeah, right!)  Out of the house at 4:30 AM to get to the hospital by 6:30 AM.  Roads look to be clear of snow and ice, so it shouldn't be a problem.  Of course, an ice storm is coming on Tuesday, so getting home might get interesting.  Well, nothing about this journey has been typical so far, so why start now?  Talk to you in a few days.

Cornellalum,

You're in my prayers tonite. I hope all goes smoothly for you tomorrow. We'll all be waiting to hear how you're doing after you get this behind you. The geneticist here also thinks there is something going on in our family, and my cousin also tested negative for the BRCA gene. I find out this week about mine.

Cathy - Yes, thanks so much for passing on what your doc said about PLCIS. Every bit of information we hear about this, every professional opinion, helps all of us. BTW, I think this may be the study that I almost participated in. Same oncotype test, would be sent to California. But when they figured out it was PLCIS and no invasion, I no longer qualified. 

Omaha GIrl - I join Mack6 in saying "Bring on the study!" So happy we might be able to contribute something to helping unravel this weird sub-species of LCIS. Thanks so much for pursuing this with your doc and keeping us updated! 

Well, ladies, I'm back.  It went well - the preliminary results from the sentinel node biopsies was negative.  Hooray!

I'm sore (very sore), but not really in a lot of pain.  I'm am very relieved to be done.  The surgery took four hours.  I have four drains (two on each side) - very annoying.  This softee 2 cami is really helping.  The hospital was great.  I had a single room, and lots of individual attention.  Everyone was super nice, which helped a lot.

The only problem I am having is that this percocet that they gave me is throwing me for a loop.  So forget that stuff!  I'm going to try doubling up on Advil, and they called in a prescription for vicoden if that doesn't work.

I am so very glad to be on the other side of this. If we got this in time, I will be thrilled.  I wll know for sure next Thursday at my follow-up appointment.  But at least I know that I have done everything I could to head off invasive cancer.