Team ILC Warriors
Comments
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sgreenarch, Very interesting article, thanks for sharing. I hope that with 30 thousand of us the medical community will begin to make it more known to stand in front of a mirror and really look at yourself naked. I think many of us tend to avoid doing this and I have seen so many post on here from women like myself that just happened to be blow drying their hair or something when they first noticed it. And then weren't really sure it meant anything . All I ever heard was get your yearly mams and feel for lumps, I never heard of standing in front of a mirror and flexing. I would love for the PCP's and gyn/ob's to start telling all women about this.
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I ordered the full text of the article that sgreenarch posted because after some research, this study seems to claim that tamoxifen not only doesn't work for some ILC cases, but might actually induce tumor growth. I will let you all know what I find out when I read the whole article. I ordered it free through Patient Access and it sometimes can take a full day to receive the email so it might take me a little while to post.
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agreenarch, thanks for that article.
Leaker, how did you adder the full article? I would like to,do same and show to my MO. I am premenopausal and would like my ovaries removed, but MO says chemo probably out me in menopause anyway. I really want to be on arimidex for the reasons in this article.
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hi All,
Got the results of MRI yesterday. US had showed tumor to be 20mm but MRI shows it to be 60mm x 37 mm x 16 mm. This is a big difference. my BS has changed the course of action and is now recommending mastectomy instead of originally planned lumpectomy. this is stressful. surgery planned for friday
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I googled until I found the actual article and ordered it through Patient Access, which is free to register for - just google that too. I'm sorry but I don't have the links handy from my iPad - if you have trouble finding it, PM me and I will try to get them for you.
SoCal - you really won't know how big that tumor is until after surgery - even MRI can be wrong. If they're talking about PET and CT scans anyway, why wouldn't they do them before surgery so you can have as much information as possible? For such a large lump, they could consider neoadjuvant (before surgery) hormonal therapy or chemo if it's indicated. If you do neoadjuvant, it could possibly shrink it enough that you could still have a lumpectomy if you want. Even with mastectomy, you still want clear margins which can be difficult with such a large tumor. I don't mean to give you more things to stress about, but I want you to have all the information you might need. If you've already considered and refused neoadjuvant, please disregard my comments.
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hi sg
Yes I love good news !!
What a relief re your brain MRI - I think waiting for initial scan results was definately the hardest part in this whole journey for me - a window to our future !!!
Soo glad all clear for you. Xx
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SoCalMom, I'm so sorry you have to go through this. We all will be here with you. I too had the huge change from what the US diagnosis was -- my US showed 4 IDCs under 1 cm and maybe a couple nodes. Final pathology was one 4.8 cm ILC and 6 nodes. My first radiation is tomorrow. I have three kids -- all teenagers -- at home. It isn't always easy or pretty, but it IS very doable. For me, the hardest part was the time when I didn't know what I was dealing with. It sounds like you might finally be getting some clarity on what you're dealing with, and I hope that helps you get some feeling of control over what's going on; I know that's what I needed.
I have found so much comfort from the women on these boards. I participate mostly in the November 2013 chemo starters group, because on a daily basis we are all going through similar things. It has helped a lot. They know exactly what I'm going through. Also, sometimes, I don't want everything in my house to be about me having cancer, but I need to communicate with someone about the noise in my head. The women here are the best.
Please PM me if you want. (BTW, I grew up in Santa Ana!)
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Lekker, please post when you have read the article. I am curious what the "issue" is with the estrogen receptors in lobular cancer.
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I read the abstract of the article, couldn't get full text. It suggested the lobular cell line they have is less susceptible to tamoxifen. They also had a xenograft, so closer to actual in-a-real-human sample, and it had some altered gene expression that related to estrogen receptors (different proteins being transcribed) but less alteration than the cell line. I will see if I can get the full text when I go to work tomorrow and read more carefully. I'm hesitant to read too much into it because these cancer cell lines have been in vitro so long that they can really express some different genes and mutate beyond what's going on in vivo.
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Lojo, it does fit with the big study concluded recently that showed AIs to work better on lobular than tamox. It sounds promising if they are beginning to figure out why that is.
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Yes, it does. I'm looking forward to reading the whole thing as the abstract suggests some growth factor targets that could be targeted to restore susceptibility to tamoxifen. I guess I'm leery of over interpreting cell line results, but it does potentially reveal some new avenues of research to pursue.
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Very interesting, Lojo. My onc has stated that I will be doing 10 year tamoxifen and no AI. Would like to hear more about this for sure.
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SoCalMom, Best f luck to you on Friday. you will be in my thoughts and prayers.
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Here's the link.
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I wanted to say hi, I have been finishing up the last of my chemo treatments, in fact my last Taxotere is Friday and the last few weeks I have not felt good at all so I was not on keeping up with all the post's. Blessings to all my ILC sisters and I will try to get caught up on recent posts.
Shary
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sgreenarch that is fabulous news on your tests! Always love to hear the GOOD, we have had enough bad. Thanks for sharing it is important. I am going to go and read the article now, thanks for the link.
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Also read an article that there is higher correlation with ILC and alcohol than with IDC!
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But I don't drink Fitzy! lol
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SoCalMom71 - Sorry the news isn't what you hoped for, but as Bec65 wrote knowledge is power and the more you know the better decisions you can make. My husband and I had a little ritual during the most difficult time for me, which was between diagnosis and MX. Every day I would say to him, "I don't want to do this" and he would answer, "But you have to". Dumb, but it always made me smile to know that I had his support. At the very least you have the support of everyone here who knows what you're going through. You just have to keep putting one foot ahead of the other and push through. It's hard, but you can do it
You don't mention that anything else showed up on the MRI. I hope this is correct. If so, that is great news. If not, at least you know more than you did before. The less surprises the better, right?
As others have written, it may turn out that the mass will measure differently than on imaging studies. Hang in there and keep us posted!
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Bettyboo, please show your onc this link: http://www.breastcancer.org/research-news/20121217-5
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where this study mentions femara can that include other ALS too as i stopped femara due to no QOL and take exemestane now?
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Lily, I believe so. The study used femara, but what holds for femara would most likely hold for the AIs generally, since it has to do with the mechanism of the drug.
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Momine,
Thanks for sharing, interesting information. I started Arimidex 2 weeks ago.
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Hi SoCalMom,
I don't want to provide false hope, but not all big tumors have invaded the lymph nodes - mine was more than 4cm and my nodes were clear. My surgeon was surprised, I think, and called it a big, stupid tumor. Even if you do have node involvement, as others have said, it is do-able, if not fun. I was pleasantly surprised how easy my mastectomy surgery was - the fear going in was much worse than anything about the recovery. I don't have chemo experience, and I'm still early into radiation, but rads so far is mostly just annoying and tedious.
Holding you in the light
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Gavingrama/Shary......woohoo on your LAST chemo. I was happy but nervous to be done.
Fitzy, I have read the alcohol relation also, and I cringe....I like red wine...so, it's good that Trisha-Anne does not drink, she proved them wrong....lol..
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thanks lojo.. my initial US exam didnt show any node abnormality.. will find out exactly tomorrow. praying to god!
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Socalmom71, will be thinking of you. Mastectomy is emotional but one of the things that kept me afloat through it was that it felt good to have that cancer, out. I did love that breast, but then it got sick (in several places) and now needed to be removed. The surgery itself is easier than I anticipated. It does seem to all happen so fast (my mastectomy was ten days after diagnosis.) hard to absorb, but keep thinking that you are doing all of this because now you are on the path to recovery. We are here for you, and any questions, you know where to come.
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Hi
I am now scheduled for my DIEP on May 5th! I am doing nipple sparing so I am really happy today. I am feeling really good about this decision and surprisingly calm. Keeping my skin and nipples is not something I thought would happen so I am thrilled!
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Ok so I'd like any info that any of you have. I had my core biopsy of my left breast and lymph node a few weeks ago. 2 weeks ago tonight my surgeon called me and said I have Grade 1 ILC and my lymph node was positive as well, they said the tumor is 1 cm. The metastatic work-up was negative as was the ultrasound to my ovaries. Yesterday I got a call telling me I have an appt with the oncologist next Wednesday at which time I may need a port for my Chemo. (This was a message left on my voice mail), and an appt. the following week with the radiation doctor. I have been researching this and apparently it is called neoadjuvant therapy when the chemo is done before surgery.
Anybody out there that had this tx in this order with the approximate same type of dx? Thanks for any input...Genny
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Hi Genny
I was also Stage 1 ILC but did not do chemo, left as a voice mail?? Really, that is horrible. Curious to where you are going as I am also right outside of Cleveland in Lake County. Usually when they do chemo 1st it is to try to shrink the tumor before surgery. I don't understand why they are throwing all of this at you, I went in for a long consultation before anything was done, everything was clearly described and then choices were made. From my experience after the biopsy you would either start chemo (after a consultation) to shrink the tumor or have a lumpectomy or MX to remove the cancer. Seems a bit confusing, I am sorry I cannot be of more help. I was treated originally though Lake West Hospital, rads at Siedman center in Mentor. I am now seen at the Cleveland Clinic, huge difference in care. I would be happy to share a great doctor/surgeons name with your if interested PM me. I didn't get all the options because I went to a smaller facility that doesn't offer all the options. For me its a year later and I am now doing what I should have done to begin with but wasn't offered originally.
Sorry you are going though this and like this..
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