Long Term ILC Survivors?
I would love to hear from you!
Comments
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Laura,
I don't know if I qualify as long-term, but I'm 3.5 years from dx...Stage III, 7cm, 4+ nodes.
All the best to you,
Trish -
laura----my mom had ILC, stage one, negative nodes. Was treated with lumpectomy, rads and tamoxifen ( for 7 years, this was before they felt 5 years was optimal length of time to be on tamox) and is now a survivor of over twenty years without a recurrence!
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trish -
3.5 years...that's great! Thanks!
awb -
Your mom rocks! Thanks for sharing her stats and survivorship! -
AWB - thanks for sharing - 20 years wow that is awesome. And Trish - congrats on 3.5 years. I look forwared to becoming a long term survivor too. For me its just over one year since diagnosis, and I just had my recon, so still finishing up procedures. karen in Denver
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Hi I would like to know if there are any ILC longterm survivors with positive lymph nodes.
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Hi there: don't know if I am considered a long-term survivor or not!! was dx with invasive pleomorphic lobular carcinoma in November of 2003. One positive node and tumor 2.5 cm. did dose dense, radiation and now on arimidex. I appreciate each day I have and hope to have many more!
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Hi...I'm approaching my 5 year mark! I, too, had invasive pleomorphic lobular carcinoma. I've read that pleomorphic can be more aggressive than classic, but my oncologist doesn't seem to pay much attention to the type of lobular carcinoma. Does anybody else's oncologist focus on the type of lobular they were diagnosed with? I was dx in May 2002, right mastectomy, 1 1/2 pos nodes, AC + Taxotere, tamoxifen (counting the days...almost finished!!) However, onc wants to put me on an AI...not sure if I will.
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Hi Mdale: Wow, am I encouraged by your post!! No, my onc did not focus on the pleomorphic issue either. To him, cancer is cancer. The only thing he did say was that her/2 positive lobular can be more aggressive than your other gardern variety lobular but this is true of ductal as well if her/2 positive. Now herceptin is available for those patients. I was a bit confused by your post though: is it that you had 1 and a half positive nodes? Just curious! Thanks again for your uplifting post and congrats on being 5 years out. It gives so much hope to those of us hoping to get to that 5 years. For me, every day is a victory!!
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Hi mja: Yes...I had 1 and 1/2 pos nodes. One node was metastatic lobular and the other was micrometastatic lobular. Just curious for any other long term survivors who completed 5 years of tamoxifen...did you continue with an AI? My onc had me switch to an AI 2 years ago and I had very bad side effects from Aromasin and Femara so I went back on Tamoxifen. I would love to be drug free at this point, but I'm afraid to take the risk.
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Hi Sherri: It's nice to hear that your friend is doing so well. How long will she be taking an AI? Is it 5 years like tamoxifen? I'm so tired of the side effects...I was hoping for a drug holiday.
Mindy -
Mindy, I agree it is hard dealing with the side effects of AIs but the fact is, particularly for ER/PR positive Lobular, they are one of the most effective treatments you can take. Generally I believe 5 years is the usual target although I am hearing more about 7 years and even continuous AI treatment for more locally advanced or aggressive cancers. In my case with my degree of nodal involvement my onc has indicated that I will always be taking some kind of anti-hormonal. I am on Aromasin now and have been for 1 year. Painful hands and joints have become a way of life for me but I feel the benefit of the drug outweighs the negatives at this time. I just hope as new treatment options are found that the side effects will be less of an issue.
Linda -
Why would you think there would be few long term survivors with only barely two+ nodes and no tumor equal to 5cm? There is every statistical and clinical reason to believe you would be.Beth
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Hi there Mdale 22 and all- so interesting that the pathologist distinguished between macro and micro amounts of cancer in the nodes. It is so amazing to me how far the knowledge has come on these issues. I only took tamoxifen for 3 months. The study on Arimidex had just come out that summer of '04 and I told my doctor I wanted to take the risk and switch to the AI due to the exciting study results. After he determined that I was truly post-menopausal (I was 45 and after all that chemo my ovaries were pretty much destroyed), we agreed to go for the Arimidex which I have been taking since August of 04. Who knows if the risk will pay off!
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Hey ladies-
I have a good friend who had ILC with positive nodes, and she just had her 5 year anniversary of being cancer free! I was happy to be there with her to celebrate. I am almost 2 years from my dx.
We will be around for a nice, long time! -
I have Invasive Lobular carcinoma and it was a 7 cc tumor in my right breast. I had a right mastectomy with 9 of 10 nodes positive and I am +++ Her-2. I am neg., for hormones. ANY LONG TERM SURVIVORS WITH MANY + NODES??
This sneaky cancer returned in my incision immediately and as a rash. That was almost 5cc. The cycle of Taxol, carboplatin and Herceptin shrunk the visible skin lesion from my scar almost immediately.
I have never heard of this happening. I am stage 1V. I have had little time to learn anything because it has all happened too fast and too very aggressive.
Would like to know if an MRI and a CAT Scan should be used to do my tumor marking. None of the skin lesion or recurrence showed on the CAT? I heard an MRI would show this?
Please help-worried.
Cathleen8 -
Hi
I am a new and I have a post about my 1V invasive Lobular C. I am not considered cureable. I am also HER-2+++ and I am on herceptin with the Taxol, and carboplatin. 8 of 10 nodes were positive and then a node in the left apeared in that breast..This never showed on the diagnostic mam...Also, right after my R. Mastectomy, cancer develooped in the skin along the incicion within three weeks: about 4cc and also a rash. I have never heard of anyone having this. I hae never had cancer before. My father had prostate cancer and my mom had a kidney cancer caught very early and both were stage 1
My cancer is said to be particularily agressive... I am going to be visiting a radiology next.
Does anyone know what works best to find sneaky cancers? and the skin that has breast cancer. Those lesions failed to show on the CAT -
I will be ending finding comrades here I have had no success with this ILC and surving issues.I am stage four I do not have the time. IN the instant chats I found only one or two women would chat and help me. I will always remember those brave women and I am grateful to them-the rest left or changed the subject to inane conversion as a tactic to avoid the topic of cancer. Well that said I know very little about true survivership or sisterhood I had hope to find....good day and good-luck.
Cathleen8 -
Hi Cathleen,
I am an ILC survivor and I am sorry to hear about our dx. I don't know a lot about the symptoms you described as mine was stage I with no node involvement. I can tell you that my surgeon and oncologist both told me it is just as treatable as IDC so I think you have good reason to be optimistic. You will have a great struggle ahead of you but if you keep positive, I think it will help. I'm sorry no one answered your cry for help. I read your post and feel bad for you. Good luck with your treatments and I hope to talk to you again.
Take care,
Nancy -
Cathleen,
I am sorry you are not getting a lot of response. Perhaps you can try the triple negative portion of this BB even without all three negatives there may be more ladies there that have dealt with similar issues.
I wish you luck....we all feel so alone sometimes and even lost. I pray for your journey on this ....many of us struggle and we all do it differently at different times.
Bless you. -
cathleen----since lobular bc is more unusual and occurs less frequently, this thread might get less responses than another purely due to the numbers of women affected. Don't give up--try posting in another thread (or in several) and you may get more of a response. There are a lot of wonderful caring supportive people here.
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HOLY MOLY -
I just got back from my monthly Bunco Night - and one of my gal pals brought her Mom along. We were talking about bc and she told me she had bc 30 years ago, but she doesn't talk about it much because it was a forbidden topic back then. How sad, but we've come a long way baby! But...she confided in me and told me she had Lobular, too. She also told me she just celebrated her 78th birthday...I am not kidding...she does not look a day over 65! An AWESOME woman!
THAT MAKES HER A 30 YEAR LOBULAR SURVIVOR!!! I hugged and kissed her and poured her a huge glass of wine - and me too!
30 YEAR LOBULAR SURVIVOR - YOU JUST GOTTA LOVE IT!
Where there is hope...there are possibilites! -
cathleen8 -
Post with more info and there's surely someone here that will help you. We help each other 24/7 - let us know how you are doing. -
Cathleen8,
So sorry you are having to deal with this. You have a very unusual form of ILC. Most are hormone pos and her2neu neg. Most lobulars show up on MRI - but I am not sure about skin lesions. You might want to post on the HER2+ thread also. Good luck to you. -
Laura, did your 30 year survivor have a mastectomy or ??
I suppose back then, that is all they did.
WOOOHOOOO!!!!!! 30 years!!!
Maybe I will continue to be a thorn in my DH's side -
Laura...thank you thank you for posting that! And you are so right, I DO LOVE IT!!!!!!!!! Marsha
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awesome friend to have met laura!!! the fear of recurrance now that i am out of treatment can be overwhelming!
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wallycat/everyone -
She had a radical single Mastectomy - unfortunately she could not remember whether her tumor was er/pr positive or negative, nor could she remember the size, etc. I think back then they did a Mast. even if a tumor was small - but not sure. -
Laura, I love hearing stories like that! 30 years, wow!!! thanks for posting!
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Laura---my mom is a twenty year survivor of ILC (stage one--lumpectomy, rads, tamox), she's also 78. She's had colon cancer twice in the last 5 years, but never a recurrence of bc and is doing very well.
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I'm curious if your mom kept her ovaries.
I can't let go worrying about the higher risk for ovarian cancer. Maybe I just need to let go of worry for recurrences but it's only been 2 months since all of this and I feel like it is looming over my head.
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