Long Term ILC Survivors?

spar2 · April 2009

I am a 5 year 3month survivor of ILC. Just had bone scane and still cancer free.

Blondee · April 2009

Thanks for the warm welcome ladies. This is a great, supportive message board and Im more than happy to give my sisters hope Smile

HensonChi · April 2009

Thanks for responding....it gives me a lot of hope! Cool

MrsRogers4 · April 2009

I just found this discussion board today and, forgive me, I'm still learning the terminology. I was dx on 3/11 and had a lumpectomy and node surgery on 3/23. 4 nodes were positive and I'm getting mentally prepared for chemo now. It is great to find survivors with my story -- my friends with bc have all been ductal with negative nodes. So my situation seemed very scary...less so now.

I am ER/PR positive and HER2 negative. I've met one medical oncologist and will be meeting a second at the University of Wisconsin Breast Center Thursday. Any advice? I'm pulling together a list of questions. For example, the oncologist told me that chemo (dose dense AC 4-cycles, followed by 12 weeks of T) improves my chance for 10-year survival by 5%. Five percent seems significant to me, but my family is worried about the side effects. They ask what percentage of women wind up with lukemia or heart damage as a result of treatment?

Has anyone asked those questions? So far it seems that this sort of chemo is the "standard of care" for my situation. Is that your experience?

Thanks for any insight you can provide. And thanks for the inspiration. Your stories provide a great deal of hope.

wallycat · April 2009

I am not sure if Oncotype DX testing is done on node positive gals; I'd read that they are starting, so that may help you with your decision.

Best to you!! I"m in brookfield!

IllinoisNancy · April 2009

Hi Walk58,

I was dx with infiltrating pleomorphic lobular carcinoma in October of 06. I had MRI's on both breasts which confirmed it was in just the left side and was 1.1 cm. After my lumpectomy, they discovered it was ER++ and PR-, HER-. My nodes were clear so they ordered the oncotypedx test and i scored a 9. I had 34 radiation treatments and I've been on tamoxifen since Feb of 07. All of my tests have been clear. Good luck with your treatments.

Take care,

Nancy

Anonymous · April 2009

Mrs Rogers - Sorry you qualify to join us! In the last few months, I have read that some Drs are no longer giving Andrimayacin as part of the chemo regimen for ILC. But instead, are giving TAC...? Don't know much about it... or why... but it's worth asking - AND perhaps some other girls will chime in. I'm surprised it's only a 5% advantage - that seems low... but again, I'm not sure.

nash · April 2009

Laura, the "A" in TAC is Adriamycin. It's my understanding that the oncs are getting away from TAC and going with TC (which is Taxol, Cytoxan) for both ILC and IDC.

MrsRogers4 · April 2009

Thanks! I've read a bit about Oncotype Dx testing for node positive, but the first oncologist I spoke to said its not useful for "high risk of recurrance" cancers. I'll be sure to talk to the doctors in Madison about it. To clarify (remember I'm new to the terminology) it's been suggested that I have 4 cycles of dose dense Cytoxen and Adriamycin, followed by Taxol for 12 weeks. They are also suggesting I participate in a clinical trial to receive a 4th drug - Avastin - if I can persuade my insurance company to allow it.

Thanks for the feedback. I REALLY appreciate it.

Genia · April 2009

I had THC. Taxotere, Herceptin and Carboplatin. My tumor went from 10+ cms to 3.5. I had a single mast. March 17th and am getting ready to start radiation soon. I also had 5 out of 7 pos. lymph nodes. So far no mets.....but I'm not holding my breath! Just prayin REALLY hard...

Anonymous · April 2009

Nash - Thanks for the info... I was confused because I had A/C followed by T. So TAC is the same but in different order...? Also, do you know why Adriamycin...is not being used? I have read it can cause heart probs... is that why?

Mrs. Rogers - It looks as though you're doing just fine with the terminology! Best wishes...

nash · April 2009

Hi, Laura. Yes, TAC is the same chemo combo as AC followed by T, but is administered differently. It's usually given altogether over the course of six rounds (TACx6).

There are two issues with the Adriamycin--one is the heart toxicity, like you mentioned. The other issue is that there is currently some debate in the onc community as to whether Adriamycin benefits HER2- patients or not. So between the two issues, a lot of oncs seem to be switching to TCx4.

Anonymous · April 2009

Nash - Thanks. So...any girls that log on and post "what questions should I ask" - one should be to question the use of Andriamycin - if it's part of their treatment. I think I read about one girl who is having neoadjuvent chemo and Andriamycin IS NOT being used...interesting.

HensonChi · April 2009

I had one infusion of adriamyacin and than they switched me over to TCH after a second hospital tested the original tissue and they found out I was ILC and Her+++. I had surgery first though.

hlya · May 2009

When I talked to my company's HR manager about quiting the job, she said her grandaunt was dx BC at her 30's, and now she is 90yo with no recurrance. But unfortunately the manager doesn't know what the type of the BC is...guess 60 before the patient didn't know either..

hlya · May 2009

BTW:

my mother in law's neighbour got BC more than 4 years ago, the tumor was definitely not small. She said she took a kind of drug for chemo which didn't cause her hair loss, and that drug is much better than the one which had been used for a long time for the patients before. But she can't remember name of the drug.

konakat · May 2009

For what it's worth, being a stage IV (liver and bones) with ILC, I'm 2 years out, feel great, even though I've been on chemo again. And don't be scared, I was stage IV from the get-go which doesn't seem so common. By no means does it mean that any of you will ever be at Stage IV. Don't ever expect it, expect to beat it!

Look at the dx date on some of the women on this board -- they've certainly been here for a long time. Also, once the threat of cancer coming back goes away as time passes, many just stop posting. You don't get to see all the women that have gone on with perfectly healthy, normal lives.

Even if the worst happens it's manageable. I work, I play, my life is the same, except for the mutant boob and chemo. Wow, that makes me laugh when I read that sentence -- guess I've accepted chemo into my life!! And chemo was soooo much easier this time - my labs were always in the normal range throughout. I don't think I'm any where down for the count. I expect to be around for quite a few more years!!

It's scary no matter how you're staged. But even if you're a stage IV girl you don't count yourself out at all. When I'm on the Stage IV boards I see when people had their dx and it is encouraging that they're still very much here and will continue to be here. It's especially encouraging when you get postings about being NED.

I don't know if this has helped. My point is, is that it is beatable, survivable, and there are many, many women out there doing fine. My mom's one of them -- not ILC, but a 15 yr survivor of IDC.

Elizabeth

Seabee · May 2009

Sheree--Sorry to be joining the conversation rather late. How did the first onc decide that you have a tumor with a high risk of recurrence, since it is HER2 negative and you aren't triple negative.? Is it Grade 3? Very large? Or is it those four nodes?

My understanding is that Gnomic Health is not ready to offer the Oncotype test to patients with more than three positive nodes, since they don;t have enough data to support a projection. They do include a tentative curve on their node positive graph which shows a higher rate of relapse for patients with four or more positive nodes, but also some benefit from chemo above a certain score--not much help if you can't get a score.

Gitane · May 2009

Elizabeth (konakat), Thank you for coming here to post. "mutant boob"? , ya, I hear that. I don't have boobs, I have implants, but I guess I feel the same way about them. You are not down for the count, you are out there helping us and especially living life. Your mom being a 15 year survivor is fantastic. I agree, it is scary no matter how you are staged. G.

Anonymous · May 2009

Konakat, thanks for that uplifting post. "mutant boobs" - I've been wordering what to think of mine. Just finished rads a few days ago and my right boob is definitely a full cup smaller than the left. I love where you say "I work, I play..." Great, we all, especially me, need to play more.

Hood1980 · May 2009

Elizabeth, Thank so much for coming by and sharing your story with us. Please continue to come back. We like your humorous take on things. I really didn't know how to describe my situation to those curious people, but you have hit the nail right on the head! I too have one mutant boob!

angeljoy · May 2009

Hi all,

It always makes me feel good to check in with the long term ILC survivors! I have a dumb question...what is NED? Seems like I should be able to figure it out as I have most of the other "shorthand", but I can't. I'm blaming it on chemo-brain. Cool

Angela

nash · May 2009

NED=No Evidence of Disease

angeljoy · May 2009

No Evidence of Disease! Of course! Thank you so much.

konakat · May 2009

Yeah mutant boob -- about 1/3 was removed in the lower outside. What's mutant is that if I raise my arm, my nipple does an about face and perkily looks to the side. If I drew on whiskers, eyes, and ears I would have a meerkat!

My surgeon said the scar tissue would go, everything would shift -- 2 years out and nope. I toy with the idea of doing something about it, maybe, eventually...

Thanks for welcoming me!

Elizabeth

dutchgirl1 · May 2009

Hallo I am 6years survivor of lobular breast cancer had lumpectomy one node positive of 23 I had chemo 4 a/c and 30 rads I was stage 2 .I am doing ok Did 5 years Arimadex

dutchgirl1 · May 2009

Hallo I am 6years survivor of lobular breast cancer had lumpectomy one node positive of 23 I had chemo 4 a/c and 30 rads I was stage 2 .I am doing ok Did 5 years Arimadex

HensonChi · May 2009

Love to hear that dutchgirl! I am so glad you posted.

Gitane · May 2009

dutchgirl1, 6 years is good news. Thanks for sharing with us. We lobular girls are in the minority, so it's nice when we can connect.

Horselover2 · May 2009

Hello Ladies,

I am a 11 year survivor of Bilateral ILC with neg nodes. I had a Bilateral mastectomy and 9 rounds of CMF. My reconstruction was with expanders, silicone implants. I am doing very well.... I work 3 12 hour shifts / week as an Emergency Department RN and ride my horse 3-4 days / week .... I am 62 years old.... keep positive and active. God Bless everyone who is on this board!

Long Term ILC Survivors?

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