Team ILC Warriors
Comments
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Neoadjuvant chemo seems surprising given the small (1cm) size of the tumor. Did the doc say what grade it was? I'd think a low grade tumor (low mitotic rate) wouldn't be likely to respond. Maybe if it's grade 3 (dividing quickly). Chemo drugs target quickly dividing cells. I'd see if they mentioned the grade anywhere. Others may chime in about neoadjuvant, but I would have thought a small tumor like that would be candidate for a lumpectomy.
Edit to add:
My understanding is that neoadj is not the preferred treatment in lobular. I'll see if I can find some others.
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Lemon, I guess that was a little misleading. At my first meeting with the BS (before the biopsy) she did tell me that she was pretty sure it was cancer and that 2 lymph nodes looked very suspicious in the ultrasound. She said at that time if it was what she suspected she would probably want to do chemo before surgery. I was at that time too stunned to ask a lot of question, and why chemo first was one of them.
Then I had the biopsy which my breast surgeon did herself, she called the next day and told me I had grade 1 ILC and that it was in the lymph node that was biopsied. Then I had the metastatic work-up and the next day her assistant called to say all was negative except for a what they suspected was a cyst on my ovary. The day after that I left for my vacation in Key West.
I called my BS when I was in Fla and asked her assistant what would be happening next. She said I needed to have a U/S of my ovary to make sure that the abnormality was just a cyst. She said that after that I would be referred to the oncologist. I told her that I would like to get appts scheduled so that I would know exactly what was going to happen when I got home. So she called and left me a voice mail with the appt for the U/S and the oncologist. Then the oncologist office called me and confirmed the appt, and gave me the appt for the rad Dr the next week. I was at work and really didn't ask any questions.
So yesterday I went for the U/S, this morning the BS assistant called and left me a voice mail that said, " I wanted to let you know that your ultrasound was negative, just a small cyst on the ovary, and confirm your appt for next Wed with the oncologist. If you need a port we will get that taken care of ASAP."
I assume all the questions I have will be answered by the oncologist as I really haven't had a chance to ask why the chemo first? I do really like my BS and I've read up on the oncologist, and heard wonderful things about her. My tx is with University Hospitals.
My earlier post was a condensed version, and after looking at it very confusing… just wondered if anyone else went right to the oncologist after dx.. Also any help with questions that I need to ask the oncologist would be greatly appreciated.
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Genny
That sounds so much better! The last you need is to be ill informed on what is happening and why. I am glad to hear they seem to be communicating with you well and you like them, so important.
I know how hard all of this is, it does get better. The Xanax does help.
Take care.
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I don't know what to think. I've been reading about neoadjuvant therapy for ILC with Femara for post-menopausal women but it sounds as though it is used when the tumor is so big it is thought to be inoperable, or possibly so small that they can shrink it in order to do lumpectomy. I'm hoping for the latter. They did say it was 1 cm, but would that include the "branches?" I guess I should stop speculating and just wait until Wednesday, or should I call my BS on Monday and see if I can get some answers. Opinions anyone?
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Hi Genny, I am sorry that you are going thru this. It is a confusing time. I would wait and talk to your doctor because doing chemo prior to surgery is really just to shrink it small enough to do a lumpectomy or if it is too close to chest wall they may want to try to shrink it so a bmx will get clean margins. If you are grade 1 then chemo will not shrink it as fast or reliable as it would grade 3. Surgery is your first line of defense with a 1cm grade 1 tumor unless it is in an inoperable place.
At this time everything is rushing by and you are probably not realizing what is happening. Make sure you either have someone with you at all doctor appointments or bring a recorder. Also I wish that I had known that I really had time to breathe and didn't need to rush anything. When you first hear cancer you freak and want to do drastic things fast. Try to stop and get a second or third opinion before you make any decision. I was 42 when diagnosed and was rushed into a bmx with reconstruction/ tissue expander placement. If I had to do it all over again I would not have had the reconstruction. Take this time to figure out what you want to do that's best for you. If I had had your stats I would probably just have done a lumpectomy and MAYBE radiation then tamoxiphen or AI's.
Have you had a brca test or a mri on both breast or any other test?
Good luck and please keep us informed
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Genny, I had neo-adjuvant, but with a much larger tumor. However, it may be the grade 1 + nodes that is triggering this approach. They may want to see how the cancer responds to chemo. ASK them, and if you don't like what you hear, get a second opinion. Actually, even if you do like what you hear, still get a second opinion.
I did see the onc right after DX. In fact, I would have insisted on it, if it had not been scheduled anyway. The treatment plan should be a joint effort by surgeon and onc, and both should be consulted before you do anything. In my opinion, that is.
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Thanks Momine and melmbc, I guess that's what is puzzling to me, is the approach given what they said was the size of the tumor. I do trust my BS, she removed a small B9 cyst for me about 10 years ago, and I liked her then and that was why I requested her this time. I guess I'll just have to be patient and ask the onc all my questions on Wed. My husband will be going with me and my best friend who also has been an RN for 30years and is chemo certified. She is going to talk to the full time chemo nurse at her hospital and help me figure out which questions I need to ask. The waiting I think is the hardest part, I want answers NOW. I'll keep you all posted when I find out more. Thanks for reminding me also that I do have time to breathe... I think we get so caught up in the idea of just getting it out of there and getting our lives back that its easy to forget that.
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Hi Genny,
You changed your avatar. Once you get a plan with surgeon & oncologist it does get easier. The thing about chemo is everyone reacts different, although most has similar side effects. Also treatment #1 can be different than # 2. My tumor was 1.1 cm. my surgeon was very pro lumpectomy, lots of the lobular ladies have mastectomies. The surgeon took about a golf ball size chunk out. Looks fine to me, not that I care at his point.
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Yes, I did change my avatar, figured my little dog was more fun to look at than me. Thanks I appreciate the input, it'll workout one way or another, I'll just be glad when Wed gets here and I have some answers. I do think I will call my BS on Monday and ask for a copy of all my metastatic workup reports, I think I'd like to see them before I go to the onc. Thanks again for your feedback.
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Do any of you ladies know,what to do about cording? I just noticed it on my bad arm. I have been doing the massages. The arm is painful but not swollen. Thanks!
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Smr, PT can help quite a lot. I had some pretty nasty cording at one point, but it eventually resolved.
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smr -
To echo Momine, PT is the best answer to cording. PT will be more vigorous in massage than you probably are. Also, at PT you warm up your arm before massage and stretch it out after, and eventually the cords dissolve. I learned that cords are the collapsed lymph vessels and blood vessels that are no longer in use after surgery. They stiffen, dry up, tighten and eventually break and reabsorb as I understand it. PT speeds up the process and gets ROM and some strength back.
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16Chris, sounds right. Mine was pretty awful and bothersome for a few months, but then it disappeared. It is also important to do the walk-fingers-up-the-wall exercise daily, or several times a day.
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Can anyone explain KI-67 to me?
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genny - Here's a link to a short explanation right here on BCO:
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Thanks Tina, I will print that off, helps a lot. There is so much to learn.
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genny - I just noticed the handy little pdf brochure about understanding one's diagnosis/path report at the bottom of the page on that link. Looks very helpful!
Best wishes!
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TinaT, I ordered it today(printer is almost out of ink), but I used it while looking up my lab and path reports, thanks. Tomorrow is the oncologist for the first time, wish me luck, looks like it's all much more advanced than I originally thought.
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Good Luck to you Genny, hope your first visit goes well.
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Good luck, Genny. I agree the booklet is a great resource for us and to give to friends and family who want to understand more about BC.
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Chris and Momine, thanks. I will be calling my PT.
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smrlvr,
I'm having similar issues - I posted a thread in Radiation Treatment a week ago - got some good answers there. I'm 1/3 of the way done with rads - didn't have any cording issues post surgery, but then immediately after starting rads the position with my arm over my head was stressful and I felt a few cords pop and it was pretty painful. I told the rad techs about it, they told the doc, and my doctor is sending me to PT at the lymphedema clinic in the hospital. She said it's not lymphedema (there is no detectable swelling in that arm at all), but that the PTs at the lymphedema clinic know how to deal with the cording issue. My arm has been stable for the last week - not much better, but no worse either. I have my first PT appointment tomorrow, and I'll let you know what they do/how it goes, but my RO was very keen on getting it taken care of quickly, so I'd definitely ask for a PT referral - preferably someone with experience with patients after breast surgery. Best!
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Sorry it took me so long to summarize the article that was mentioned a page or two ago. It's written at a pretty technical level and I'm not a scientist so if anyone has any additions or corrections, please post. The main point I got out of it was that ILC has different gene expressions than IDC and that might be a reason that ILC develops tamoxifen resistance. Estrogen is not the only fuel for the fire so to speak and many different genes may play a role in tumor growth. They specifically mentioned that FGFR1 can be over expressed in certain ILC and this might cause tamoxifen resistance. In that example, theoretically, giving an FGFR1-inhibitor (several are currently in trials) along with tamoxifen would allow the tamoxifen to do its job. The results of this article are all still very much conceptual and no studies are even set up to start investigating if this would work in humans.
On paper this makes sense. It's like the "triple cocktail" of AIDS drugs - you have to shut down multiple growth pathways at the same time. A lot of cancer drugs are too toxic to take all at the same time, but cancer is an ever-mutating beast. That's why if even a single malignant cell survives a given treatment, that treatment probably won't be effective again. It's why even people who undergo chemo or while taking endocrine therapy can recur. In a way I've always thought it was interesting that we only measure ER, PR and her2 when there are probably dozens if not hundreds of other genes that would provide insight into a given tumor's likely behavior and treatment targets. I guess it's because they're still trying to find those other genes and quantify what their expression means (which brings up another question - what does the PR do? I've only ever been able to find "it indicates a functioning ER pathway" and that higher levels of PR expression are associated with better outcomes but no one seems to know why). It is speculated that Androgen Receptors AR probably play a role in at least some breast cancers and vitamin D receptors are under investigation. And what about the other hormones that are involved with healthy breast growth and function like prolactin and oxytocin? Thyroid and parathyroid? You get the picture. The reason that highly ER positive tumors can recur and progress even when starved of estrogen (like with an AI) is that they can sometimes find another pathway to grow. And while the cancer cells can find those other pathways, we're still looking for them.
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Lekker, thanks so much. That all makes sense, good job
I have often wondered about my androgens. I have at various points in my life had what I now realize are symptoms of excess androgens. Oh well!
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Right after I posted my summary, I saw a link on the Research thread that talks about some of the same things. It might be a good read if you're interested in this topic.
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i am 100% PR POSITIVE too so this is a good prognostic factor?
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Lily - from what I've found in my research it does appear that high PR expression is good. Unfortunately, recurrences can be PR negative even if the original tumor is positive. Like I said before, I can't find a lot of information about what the PR actually does.
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hi All
i had my surgery last friday (Uni MX) and came home on saturday. I have 2 drains and a pain pump attached for now. So far the pain is manageable.
As i had posted earlier, US showed 2cm tumor and biopsy put it as ILC grade 2. I did MRI on my own and found that it is 6cm which changed the lumpectomy to MX. From the day i found out to the surgery were just two weeks and i do feel that i rushed it, but i just wanted to do something quickly.
The frozen test on sentinel node showed negative which is good, waiting for path reports now. Can someone pls let me know what are the next steps and how treatment might change if path report show sentinel negative? Thanks a lot for all info and support
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Hi SoCal,
If nodes are negative (yay!) they might order an oncotype dx test which will provide information on how aggressive the tumor is. If it is a non-aggressive then then you might not need chemo. What I don't know is if the size will be too big for an oncotype test. Some docs will treat large tumors with chemo regardless of nodes or grade. I almost didn't get mine paid for because it was over 4cm, though some insurance companies say 5cm. See if your surgeon or oncologist thinks you would benefit from the oncotype test. Ten years ago I know I would have had chemo with the same pathology, but the test came back as very low risk for recurrence and low benefit from chemo.
Fingers crossed that final pathology is neg
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Hi all. New poster tonight.
Lojo - I had 3 nodes removed and all were negative at time of surgery. Returned pathology on the surgery showed a few clusters of cells in the sentinel node. Onc feels it might even be that those cells were dead and flushed, given the pathology results and where in the node they were located. Oncotype DX was ordered and definitely had some resistance from utilization review team at my primary care group. I switched primary care groups (have an HMO) however to switch to my 2nd opinion oncologist who agreed that oncotyping should help determine the treatment selection. Oncotype score was 14. Major history of heart disease in my family so my oncologist offered me the option of "no A" chemo (leaving out the drug that is most toxic to cardiac tissue), or radiation and tamoxifen with or without ovarian suppression.
I chose not to have chemo. Research indicates that those of us on the low end of recurrence risk determined by oncotype-dx scores aren't helped appreciably by chemo and chemo can be very damaging (and actually these less aggressive cancers are even shown to be somewhat chemo resistant). But docs still recommend it regularly and patients choose it because they want to be certain of having "done everything" to prevent recurrence. It is totally understandable and I still feel a twinge when I see how many people in my situation are getting chemo. But, I think we all have to make choices about our treatment for our own good.
Definitely I would insist on the oncotype. I would have paid for it myself even though it is reportedly very expensive. I would have done the chemo had it made sense but not needlessly.
Fingers crossed on your pathology. I remember the wait for those results.
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