ILC - just found out I'm triple negative
Hi. I am very new to my diagnosis. I just met with my surgeon and oncologist for the first time yesterday.
I had had the prelim results of my core biopsy that told me I had ILC, pleomorphic type. The new information received at my appointment was that the tumor/cancer is triple negative. (This is supposedly unusual for ILC so the oncologist is going to have my biopsy sample slides retested by her pathologists there at Sloan Kettering just to confirm.)
Anyone else out there that is triple negative ILC?
What treatments did you follow?
I still need to have a PET scan, heart tests and breast MRI next week, but as of now the game plan is two rounds of Adriamycin/Cytoxan + Immunity booster and then see if tumor has shrunk. If it hasn't then go in for surgery.
If the A/C+Immun is working on the tumor, then 2 more rounds before moving on to Taxol/ another tbd.
To those of you with ILC, did any of you test with far flung ILC cancer cells throughout your body at the time of your initial diagnosis? I guess I'm still really scared about how far this may have spread at this point.
As far as surgery goes I was thinking I'd go for bilateral mastectomy even if there were no signs of cancer on the "healthy" breast just to "be safer". I'm having genetic screening to see what my risk level is, but now I'm considering keeping the one breast if the risk is low.
Any PILC people advise double? Especially with triple neg?
THANKS!
Comments
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Sorry that you're here. ;( But you've found a great place for support and understanding.
My mom was ILC/triple neg. She had lump and radiation and four rounds of chemo (I'm sorry I don't know what type). She was older and followed all doctors told her to do. Even though she wanted BMX. Go figure. She's doing great 10 years out and follows NOTHING special. Has not changed her life except she gets a lot of exercise. A lot. Still drinks modestly, eats whatever, never really researched, no supplements, etc. I'm the exact crazy opposite!
Me: I'm ILC as well. In part, I chose to have BMX because some, not all, MOs will tell you that ILC tends to increase chance of it occurring in the other breast. Other pooh-pooh this. I went to a new MO recently (after all surgery) who said: Good you chose BMX because you also had LCIS. And this increases chance in other breast. THAT I had never heard! All doctors tell us different things. It's kinda hard to navigate.
It's difficult to make the decision on surgery. Just talk to a lot of people here, ask questions, talk to your doctors and go with what you can live with. My tumor was not located by mammo even when I was pointing it out to them. Nada. That pretty much sealed the deal for me. No lump and future mammos to contend with when it did not work for me before (dense breasts).
Hugs to you!
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Agatha, - As you can see below, I had a similar diagnosis. My bmx was done before chemo, but many have it the other way around.
(For me, however, this was a second ILC diagnosis, - the first was er/pr+ and I opted for lumpectomy at that time.)
These boards are a wealth of information. I am sure that someone will have answers to what ever questions you have!
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Thank you all for replying. I am hanging out with friends today trying to relax. I'm going to read your posts later tonight when I can pay them the attention they deserve. Just wanted to thank you for responding. It helps not to feel so alone!
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None of what follows is meant to influence you. It is meant to inform you. We will support you in your treatment decisions.
Here in the ILC forum section, you will find many discussion threads from which you can learn a great deal about ILC, including characteristics that you may want to take into account in your deciding on surgery. ILC has more tendency than IDC to bilateral occurrence. In addition, it has been known to be capable of evading detection by mammography, sometimes by ultrasound too, sometimes even by MRI too. Take the time to read through at least some of the longer discussion threads, such as these __
https://community.breastcancer.org/forum/71/topics/747515?page=1
https://community.breastcancer.org/forum/71/topics/835060?page=1
https://community.breastcancer.org/forum/71/topics/800630?page=1
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Sep 1, 2017 10:20AM - edited Sep 1, 2017 10:31AM by Icietla
Another ILC-er here. By my calculations, the little-to-no-statistical-difference-in-outcomes so often used to argue against our mastectomy and CPM choices is roughly 93% weighted by IDC and DCIS cases. Somebody tell me if I am wrong about that, huh?
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"Bilateral involvement is reported to be 20–29% in lobular carcinoma [10, 12, 16, 41, 42]. In our dataset the incidence of contralateral breast cancer in women with ILC was nearly double that in women with IDC."
Source: https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr767
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More to consider__
https://community.breastcancer.org/forum/113/topics/820712?page=1
https://community.breastcancer.org/forum/113/topics/805330?page=1
https://community.breastcancer.org/forum/113/topics/844617?page=1
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Hi Agatha - you posted on my thread about lobular specialists at Sloan. I'd be interested in knowing who you saw.
I had BMX for peace of mind, because they had a terrible time finding my tumor. It's there , it's not there, nothing's there, wait we should biopsy, nope, can't see anything to biopsy ... and so on. With that track record, how could I ever be sure about mammogram results? And after you do more research you will see how difficult lobular is to find on scans. Whatever your decision, I wish you the best.
There's also an ILC group on Facebook that is incredibly responsive and helpful.
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Icietla - Thank you so much for all the links to other discussions. I really appreciate your gathering it all together like that for me.
EastCoast and AnotherNYCGirl - Thank you for letting me in on your though processes around deciding on your surgery. Peace of mind is going to be a big factor for me.
CCS648 - the oncologist I am seeing at Sloan Kettering is Dr. Jacqueline Bromberg.
I think once I have the results of the PET, MRI and genetic testing I'll be in a better spot to make my decision on surgery. I am in a holding pattern until I have all these test scheduled. Plus now have to get that root canal ASAP... the one I wanted to put off until insurance covered it in 6 months :-P
What a whirlwind!!
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You are very welcome, AgathaNYC. I will be back to your other (Surgery section) thread pretty soon.
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Just dropping by for an update.
I had a good appointment with my oncologist today. She was really pleased with my PET scan results - seemingly no signs of metastasis in other area of my body. I have been really scared all week and it helped to get some good news.
Irritatingly the lab that did my original core biopsy has still not delivered the sample slides to my oncologist at MSK who wants to retest them there just to confirm my ILC is indeed triple negative before we start chemo. My surgeon wants an additional biopsy on an area of the breast above the tumor to check on some calcification. I may ask them to do a new biopsy of the tumor at the same time to re-test the receptor status.
I had another good consult with my surgeon. I wanted to clarify why exactly I was getting this MRI tomorrow. I also wanted to confirm I'd have results of my genetic screening back before I had to make my final decision on surgery (uni or bi).
The oncologist's office assistant asked me if I'd like to see what the Chemo center was like. She took me down and introduced me to the manager of the chemo area/pharmacy in the breast center. He took me on a little tour. It really helped calm that worry a little. At least I can now imagine what it looks like and it is a little bit less scary.
OK - next up a breast MRI at 7:30 tomorrow morning.
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Thank you for sharing this good news.
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Agatha:
Very good news!
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Glad the results came back clean. Horrible that you are still waiting on the slides, but good idea about if it doesnt arrive soon that maybe they can take their own sample while doing the other biopsy.
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Hi - checking in :-) Thank you for the good wishes.
Still no slides.... and now they've "misplaced" the my mammogram films they need for comparison to re-evaluate the calcifications (old fashioned hard copy kind - and yes I was stupid enough to give them the only copies.) I'm really tying not to sweat the small stuff, but the frustration got the better of me yesterday and I had a few crying jags at the breast center.
More good news: the nodes that were glowing on my PET scan looked perfectly fine on a follow-up ultrasound yesterday. My surgeon is very hopeful that after my neo-adj chemo there will be no need to remove many of the axillary nodes.
A little bit of concerning news is that the MRI results are back showing that my tumor has indeed grown into the pectoralis muscle, but just superficially she said. Surgeon again hopes chemo before surgery will shrink the tumor away from the muscle and she won't need to remove that. But luckily not in my chest wall or rib cage so it could have been a lot worse for me.
Just a few more appointments before chemo starts in 10 days. :
- finish up dental work (just had a root canal this morning)
- biopsy to double check the Triple Negative status of my ILC
- genetic screening/counseling
- pick up the wig I ordered and have it styled
Thanks for listening. It's nice to have found a place where people understand.
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Agatha. I am so impressed how quickly you are moving through your diagnosis and treatment plan. I cannot imagine all the mental hoops you have had to jump through in such a short time. It is terrifying to be diagnosed, wait for test results and face chemo. I was diagnosed also with ILC pleomorphic type and triple negative in March. Surgery end of May and Chemo started in July. Big difference in timing. My MO also said this has a tendency to spread to the other breast, but my surgeon recommended against a bilateral. Since we have already bought annual MRIs for the next 5 years, I thought it would be fine. Hope that is so. At this point I am glad I had just a single mastectomy because I find the expander so annoying, I hate it every day. I hate the lack of sensation, I hate the weight. If I had the same thing on both sides I'd lose my mind.
Icietla Thanks for the links.
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ILC triple negative girl here. I'm in a clinical trial. I did four rounds of Doxil and carboplatin over the summer, and I had the UMX with DIEP reconstruction last Monday.
The tumor was 6 cm even after the neoadjuvant, and I had 20 + axillary LNs out of 28, plus two internal mammary that plastics took out while doing the reconstruction.
Some days I'm more optimistic than others, and today is not a day that I have a lot of optimism to share, but I send all of you virtual hugs.
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Hi, Travelhound. --- Thanks so much for posting. Sorry to hear that we are connected by this. I do feel like I've been caught up in a twister sometimes but on the other hand I wouldn't want too much time for my mind to stew, waiting for the next step. My oncologist is of another opinion, that this ILC won't spread to the other breast. If I were to get cancer there it would be a new one. Her main concern at the moment is to attack any ILC cells that mights have spread beyond my breast ASAP. So that's why we're starting with 2 sessions chemo to see if it's working. If not, then surgery. Thank you so much for your frank input about your choice of surgery. I went for the genetic counseling today. I'll get the results in 3 weeks. If my genes put me in high risk I will likely do bi- with no recon.
Hey, Nurseinboots - Hugs right back at ya. Sorry you are in one of the "down" days we all seem to get. Hopefully tomorrow will be different. Did your tumor shrink at all from the Doxil+Carbo? I'm sending you my absolute best wishes as you are recovering from surgery.
Take care of yourselves everyone!
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48 hours from now I'll be in the chemo chair for the first time. To say I'm nervous is a bit of an understatement. Just wanted to check in for a little group hug.
My oncologist requested that I have "do-over" of my core biopsy so that Sloan Kettering could run their own pathology on it. Maybe there's a chance it won't come back as Triple Negative? It would be nice to have other treatment options in the tool bag, but it will be what it will be.
My insurance rejected the pre-approval for the at-home Neulasta injection. I can't wear the adhesive auto-shot one because me skin is so sensitive to latex based adhesives. I spoke with the insurance co's nurse case manager and she said she'd see if she could get the denial reversed for the at home version. What did most of you guys do if you were given Neulasta?
My friend that was going to see me home after the treatment and hang out with me the day after has just come down with a bad cold. It's best she stays away. right?
On a brighter note I picked up my wig today. It turned out pretty well. The idea of losing my hair is still upsetting me but I feel better that I know I'm "covered" ;-)
Hope everyone is having a good week!
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Hi Agatha,
Oh I do hope a re-check at MSK may change the game for you. I'm sure you are in the Chemo group for Oct., but I'm glad you posted here so I could say good luck. It really sucks with insurance. Just don't understand why they make things like this so difficult. You would think we are trying to beat the system. Hopefully they can get that reversed by a personal phone call. Sometimes that's what it takes.
I would think it would be best for her to stay away. You'll just be starting treatment but you don't want to come down with a cold a few days later and deal with that on top of everything. Hopefully you will have very minimal SE's from chemo. Have someone else to go with you?
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Thanks for encouragement, beach2 beach!
My friend is going to bow out for this round. Not worth the chance of catching a cold, although riding the subway is probably just as chancey as far as germs go. But better safe than sorry,
The insurance company called and said I now have been approved for the at-home injection of Neulasta - so that's good.
Ok, gotta go get ready for my first day of chemo :-)
Hope everyone is well.
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Good luck with the first day, Agatha.
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Hi,
I'm Pleomorphic ILC Triple Negative (I used to actually be a person). I have different tumor measurements on US, MRI, Pet Scan ranging from 3-5, so I've decided that I have a 4 cm tumor. I had clear PET, don't appear to have any Node involvement or vascular invasion. I did 4 AC and am now receiving Taxol 12/Carbo 4. Carbo seems to be knocking the shit out of all of my blood cells, so I'm on a vacation from chemo this week. Awaiting follow-up CBC to see if I need transfusion.
I was told that if I have residual cancer after chemo, that I will be a candidate for Xeloda.
Cancer sucks.
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Agatha, - Hoping that all goes smoothly today, and that you have a relaxing weekend! Yes, stay away from the friend with the cold!
Lightseeker, - Hope you are feeling better and wont need transfusion! I was close to needing one after my first dose of AC, so after that the onc split up the dose and I had just C then just A, then 4 DD taxol.
Chemo is yuck, - not fun, but do-able.
Keep your chin up!!
Hugs to all here!
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Hi, everyone. Thanks for the encouraging words. Just back from my first chemo treatment. It went well. The only discomfort or strange sensation that I felt was a burning in my nose and eyes when the C was going in. But it was short lived. Fingers crossed for not too much nausea.
The big news is that the results of the 2nd biopsy showed that I have triple negative IDC, not ILC. This made more sense to the oncologist since triple negative ILC is rare. They are going to retest both sets of biopsy samples, just to make sure that I don't have both type of cells lurking in my body. If I have to be triple negative, onc says the IDC is preferable because it responds to chemo better than ILC would have.
Lightseeker - I hope you are feeling better. They haven't decided whether or not I'll do Carbo with my Taxol. I hope that you won't need a transfusion and don't have any more delays to your treatment!
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I'm so horrifically sad but, I just keep trying to accept the things that I can not change. I'm accepting the delay in my chemo. Repeat CBC did show numbers up a bit leading me to believe that previous days results were actual Nadir. I did NOT require transfusion. Depending on whether my platelets return to >100k will determine if I get to continue on with Carboplatin.
I hate that so much is out of my control
Eve
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Dear Eve - The feeling that so much is beyond my ability to control is one of the hardest part of my whole situation. I imagine it's hard for most of us. I wish I knew the right thing to say to alleviate some of your sadness. Please just know that everyone here on this board will be here to listen.
Since my diagnosis has changed from ILC to IDC I'm not going to be on this thread very often anymore, but please know I"ll be thinking about you.
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Agatha, I am both ILC and IDC, both Triple Negative.
My ILC was not discovered until surgery.
What did they discover at surgery - both types?
It’s HIGHLY unlikely they would diagnose ILC in error. It’s much more probable it is mixed breast cancer, and just depends where they biopsied it.
I hope you get a bilateral, because lobular DOES move into the opposite breast, and you will be dealing with trying to get insurance approvals for appropriate scans for the rest of your life
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