Pleomorphic LCIS
Comments
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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
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Cathy I am so happy for you and that pathology showed nothing else in contralateral breast...hmm I didn't even know that word last year (:
Do you have a surgeon in Canada for DIEP recon?
Cornellalum, I drove in blizzards and more back in NE and here in NY but my cousins always tell me that the south comes to a stop over flurries. I would prefer living somewhere warm and Long Island is typically warmer than NE.
Warm Fuzzies to you all.
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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
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Anne, I cannot take tamoxifen due to narrowing of carotid artery. This is apparently a hereditary thing. In fact my mom has just had surgery for an aortic aneursym, somewhat similiar issue. So due to stroke concerns, that will not be an option for me. I am hoping that chemo or rads won't be necessary, but I will see what the medical oncologist thinks. That is such inspiring news about your mom, 23 years without recurrence is encouraging.
I do have an appoint. with a plastic surgeon in March who does DIEP in Toronto. The oncologist thought it best to deal with just the cancer first then think about reconstruction after. So unfortunately the travel will have to continue. My medical oncologist who I do really trust, is at home. This is one of the down sides to living in a smaller city, but I love it where I live.
Here's hoping for good news for both of you, Chris and OmahaGirl. Lets make 2010 a year of better news.
Cathy
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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 (:
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Cathy, I'm sooooo happy for you! Negative nodes! I hope so much that your doc is right and you'll need no chemo or rads. That's huge! I got good news today, too. Hopefully I had my last breast MRI on Monday - and got the call today that my "contralateral" breast shows no changes from 1 1/2 years ago! Yeah! So I didn't wait too long for PM on the other side! I called today to start things rolling on the PM with immediate recon in New Orleans. I, too, want to never have to worry about any of this ever, ever again! Yes - to 2010 being a great year for all of us!!!!!!!!!!
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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
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Cathy & Minnesota super good news for you....here is looking for a great 2010!
Balsie
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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
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Linda I am so happy for you!!!!!! Reading your post has just brought tears to my eyes. I so badly want this to be a better year for all of us, and you have just added to the "good vibes" that are going on. Lets keep them going.
It is very interesting to me how your stories start to feel like they are my own????? Does this make any sense? Although I have not ever met any of you, but have corresponded here on these forums, you start to feel like family.
Cathy
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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
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I second that emotion! I count on all of you for your loving support through the good the bad and the ugly of BC.
Looks like I am keeping the ninny's for another year. Ha Ha I just realized I used my family term for boobs, my youngest niece could talk I swear when she was one and she named them that, and she would pat mine and ask me if I had warm milk in my ninny's too LOL We always say she was so smart because my sister nursed her until she was 2.
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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.
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Oh Cornellalum I am praying for you that this too passes and surgery/recovery goes smoothly and quickly. I know you probably have said so somewhere on this board but are you having immediate recon? We will all be here for you!
Linda
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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
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cornellalum~ I will be thinking about you tomorrow for your preop....everything will go well.
Balsie~
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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
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Yes, Linda!!!! Yeah!!!!!!!! Another good report!!!!!!!!!!!!!! If I were you. I think I'd ask if I could be at that meeting. Really. Or maybe if they'd make a tape for you? I really, really want to hear what they way, too!
Cornellalum - Pretty soon you'll be on the other side! We'll all be thinking of you tomorrow and, of course, on Monday.
Cathy - I think the soonest I can be scheduled is April. But that's okay. I feel a lot better, knowing the MRI seems good. It was able to pick up the PLCIS last time around.
Gals - I agree with everything all of you have said about this thread. I think how horrible it would be if I were going thru all this crappy stuff alone... all of this PLCIS business. It's bad enough having to deal with this rare sort of cancer about which there is little info. But having all of you here, and having the ability to pool our info and our experiences has been invaluable in so many ways. And it's great to know that none of us think each other is nuts!
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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
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Glad to hear you will receive the OncoType, although it has its issues too, it is what we have to help us make the decision.
I actually just had my slides from my BC surgery in 08 sent to Sloan to be read. I just need to know that they did not mistake PLCIS for IDC.
My tissue from last Friday was the first of the PLCIS study and soon they will be asking the rest of you for yours.
Have a restful weekend.
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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.
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BRING IT ON !!!!!!!!
I welcome this study on PLCIS. From everything that I have read it appears that there is a link to invasive cancer unlike that of classic LCIS. I hope that through this study they can help clarify the status and determine a definitive treatment.
Cornellalum I will be thinking of you Monday and sending you healing prayers.
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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
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I will tell my Dr. to get on the ball!! But don't worry because they save all your slides for a million years so they will be able to get it once they start requesting the slides. They are going to look at mine from 2008. However, Cornellalum it wouldn't hurt to mention that your tissue will be used in the very near future for a study at Sloan. I will be praying for you and sending positive thoughts for a quick and speedy recovery.
Hugs,
Linda
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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.
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cornellalum~ Good luck,.....I will be thinking about you. give us an update when you can.
Warmly,
Balsie~
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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!
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Best wishes, Cornellalum!
If you have special requests for your pathology tissue, then make them. When I had genetic counseling, they said I may be at higher risk for Cowden's, which produced hamartomas. I asked on my next biopsy if the pathologist could make a statement if they saw any hamartomas - and they did. 'No hamartomas seen.' Since Cowden's is very rare,this helped solidify my decision to not be tested for Cowden's.
Maybe they can do things with non-preserved tissue, or tissue preserved a certain way.
The more info the better! Thank you all for trying to understand LCIS in all of its manifestations better.
Again, best wishes Cornellalum, and let us know how it goes, OK?
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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.
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Cornellalum, I am so happy to hear from you and glad that you are not in terrible pain, which I have always heard most women are not, so I happy that you are not an exception to the rule.
I find Vicodin to be less loopy than Percoset, Percoset is again as strong, Hope you are being cared for and waited on hand and foot.
Hopefully everything will be as Leaf always says "Boringly B9"
Linda
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