Team ILC Warriors
Comments
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I too, had shoulder pain that seemed to be getting worse. My MO ordered an x-ray of the shoulder and ruled out progression. She sent me to a dr that specializes in physical medicine and rehabilitation. This dr determined that I had bursitis or tendonitis of the rotator cuff. She said that she sees many women who have been treated for BC who have this issue. A change in posture etc can irritate the bursa and/or rotator cuff. I have been seeing a PT who agrees with this diagnosis. Strength training, stretching, and better posture have made a big difference. Hopefully, your pain is due to something simple like this.0 -
thank you so much GeorgiaRai. I did have Dr Hahm on my list to consider. It is always nice to have a recommendation as well.
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Has hormonal therapy been mentioned? My NP just told me at a check up last week that arimidex can cause joint issues, (of course) but one of hte joints affected is the shoulder.
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I am so thankful for your sharing! Its where we can relate or receive knowledge..... I am going in to discuss poss tests for the area. Hopefully I can chaulk it up to its nothing or deal with it....
Its scary to think in some cases blood work does not show flags when you have a reoccurance..That is sneaky! I was looking to see if I could find a better understanding of my stage# ,whether I am lla or what can anyone input? I feel so ignorant right now.... And how do you know what form of ILC do you have??? I understand there is two! Has anyone had the BRACl BRAC ll tests and it came back positive?
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mtks, as far as I know there is only one kind of ILC, and that is ILC. Perhaps you are thinking of ILCS, but that refers to the stage (0) not the type.
Your onc should have explained your stage to you, but from the stats you have in your siggy, it sounds like stage 1 and low-grade, so the chances of recurrence are low.
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No there are three types of ILC, Classic, Phleomorphic and I believe another one, but I can't remember what that one is called. I will try and find out and post for you.
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This may help, or not because you practically have to be a scientist to understand: - http://www.breastpathology.info/Lobular Carcinoma Variants.html#Alveolar
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Fizzdon, ok, yes, that is true. I hadn't thought of that aspect.
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Hi ladies I'm going to sound a bit silly here but how do you know whether your ILC was classic or pleomorphic. My path report only said ILC and no other description and my oncologist has never told me what type I had, only that it was very slow growing and lazy is how he described it. I was grade 2. Couldn't have been too lazy if it found its way into my lymph nodes. I'm getting the impression that pleomorphic is a faster growing type of ILC, am I right?0
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Yes from what I believe Pleomorphic is the one with the least favourable outcome. I can't see it on my pathology report either, but I thought I had the Classic type, I'm sure I asked and my surgeon said that the type I have. On my pathology report it just says Infiltrating Lobular Carcinoma. It does say Tubule formation:3, Nuclear atypia:2 Mitotic index:1. I will have to do further investigation.
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Good point, Tania! If it's slow growing how come it made it to my lymph nodes is EXACTLY right! Just because it's 'slow growing' doesn't mean it isn't deadly. I heard that line about slow growing being a good thing sooo many times in the beginning. Like when I was pushing for surgery dates, I was told "you've had this for a looooonnnnggg time..." SO WHAT? I want it out. Now!
Don't let anyone downplay ILC just because it's "slow growing."
I remember asking my nurse about the type and the question really stumped her. Call and ask your team. It's just one more way we can make docs aware of the differences between ILC and other types of cancer. If they don't know, shouldn't they? I personally believe we need specialists who work just with ILC. RIght now there are docs who are treating us like it's standard stuff and it's not.
Ok, rant over
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Yeeesssssssssss I so totally agree bc101 - and how about training them in how better to detect ILC, the length of time it takes to detect at the moment is just not good enough!!!
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Hartrish, I agree with GeorgiaRai. I use to live in Canton, GA and went to Dr Hillary Hahm. She was the best. I since moved out of state and ended up with another breast cancer 6 years later. Believe me, I have not found any oncology practice in my present city that measures up to her (and staff). She looks at each patient as an individual so that your treatment doesn't have to fit some one size fits all recipe. BTW, I hugged her so tight when I finished treatment and before I moved out of state, she didn't seem to mind.
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Tanai, from what I undertstand, the pleomorphic invasive lobular pathology shows a variation of cell shapes. Like a combination of ductal and lobular types. I have pleopmorphic invasive lobular. But an even rarer form is the triple negative status. Pleomorphic Lobular triple negative cancer is so rare there isn't hardly any research to work with for treatment plans. .
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Yes ladies, I do have to say that it is so disappointing that they treat lobular as your usual "run of the mill" type of breast cancer. I find that they seem to give less priority to ILC patients due to it's slower growing nature but you're absolutely right bc101 in saying that just because it's slow growing it doesn't mean it's not deadly. I sometimes question the use of chemo on ILC as they say it works better on faster growing cells. Then there's the study that says Tamoxifen isn't as effective for ILC but when I mention that to my specialist he just says that this is the standard of care. Do they really know how to treat this type of breast cancer or are they just guessing? More studies need to be done and they really need to treat this type of disease separately from the more common types like IDC.
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Tania, I suppose it all depends on which standards of care your doc is following.
Yes, it is guesswork, but on the positive side there are some exciting things going on in cancer care. For example, I think we are fortunate that right now the focus is on the molecular biology of your tumor. Did you have an OncotypeDX test done? Really I don't think your team can have a handle on your treatment unless an Oncotype is done. It's not everything - it's just another piece of the puzzle. In case you don't know, this test predicts your risk of recurrence over 10 years. My score was low (10). BUT with lobular cancer, the risk isn't so much over the next 10 years as it is more than 15 years out. So with ILC, it's not a case of getting us past the first 5 years and then we're in the clear. I realize there are no guarantees, but the risk with ILC is different. They don't tell you that in the beginning as not to scare you. But in just thinking about this and knowing that type of risk is different, how should they treat us? If your Onco score is higher, they'd recommend chemo just to have some big guns against it, not necessarily because it's a sure thing. You're right, recent studies have shown that with ER+/PR+ cancer, hormonal therapy works better. Your doc might have other reasons for having you on Tamoxifen. If you're concerned about it, you might want to get a second opinion. It never hurts to have more than one doc weigh in on your treatment.
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I am 5 years out at the end of 4/15 for Stage 3 ILC with 5 cm tumor and 5 large positive nodes out of 7 in left axilla. I was tested because of large family history but was negative for BRCA 1 and 2. DId not have oncotype testing but now wish i had but a little late for that. I will have been on Femara(letrozole) for 5 years 9/15 with many nasty side effects but i am still here. My onc told me at diagnosis that i had to have had the cancer from 8-10 or even more years as it was a Mitotic score of 1 and extremely slow growing. I think that it is crazy that it never showed on my mammogram or anything else including an MRI 3 years before diagnosis. I found the cancer in my axilla by being a volunteer patient for a new breast ultrasound unit at our Breast Imaging Center where i work as a Diagnostic Breast Specialist. I had no symptoms other than breast feeling heavy and underarm slightly tender. I had bilateral mastectomy as i know as sneaky as ILC can be it was likely in other breast just not seen. MRI was negative but surgical path at removal showed 2 precancers of different types in right breast in same area as left lobular cancer. The types were ALH and ADH so they were primed and ready to blossom. I did not do reconstruction as i was fighting for my life with a Stage 3 BR CA and did not want to compromise my immune system with more surgery. I wanted to hit it hard and fast. So far that thinking has been a blessing and i thank God everyday for still being here. I am still kicking just not as hard and high as before. I try to be an advocate for all my patients at our center but have to be careful not to step on toes of surgeons and oncs. it is a tricky road but one i walk daily with confidence i am doing the right thing. Well that is my storyin a much shortened form.
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wow! Its all too amazing what info you all can give. I feel like if i want ot know somethng,I should come here!!! Good job girls for helping me find info! I saw on my path report :
Histologic Grade: Nottingham Histologic Score (note l)
Glandular(Aoinar) Tubular Differentiatton Score:3
Nuclear Pleomorphism Score:1 Nuclei small with little increase in size in comparison with normal breast epithial cell, regular outlines, uniform nuclear chromatin, little variation in size.
Mitotic Count Score:1
There was something marked out with a marker under the overall grade ....?????? curious to what it was!
It looks like I didn't get ALL of my pathology report because where it says (see note l,) or any other letter, I cant find any pages that have the in-depth report on that specific item.
Looks like I have some research to do!
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@mkts... If curious, here's how the "Grade" is determined.
There are different "scoring systems" available for determining the grade. One of these systems is the Nottingham Histologic Score system. In this scoring system, there are three factors that the pathologists take into consideration:
1. the amount of gland formation ("differentiation" or how well the tumor cells try to recreate normal glands)
2. the nuclear features ("pleomorphism" or how "ugly" the tumor cells look)
3. the mitotic activity (how much the tumor cells are dividing)Each of these features is scored from 1-3, and then each score is added to give a final total score ranging from 3-9. The final total score is used to determine the grade in the following way:
Grade 1 tumors have a score of 3-5
Grade 2 tumors have a score of 6-7
Grade 3 tumors have a score of 8-90 -
Lobular, from the many, many papers I've read since dx'ed, always gets a 3 for tubule (gland) formation, because it doesn't form tubules.
If the nuclear and mitotic scores are both 1, your ILC is score is a 5 and you're considered Grade 1. Anything other than a 1 on both, added to the automatic 3 for absent tubules, and you're (minimum) Grade 2, which is where almost all ILC falls.
There is ongoing discussion/debate about whether the current grading systems are even meaningful for lobular (yet another Odd One Out factor - see my thread from a year+ ago), as they were developed for ductal.
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MmeJ
You're back!! Haven't seen you since Oct of last year.
Thanks for the clarification on the Grading. It makes total sense.Your thread: ILC - The Odd One Out? is one of the most important contributions to the ILC section, imo.
It was a catalyst for my research.0 -
This thread is a wealth of information, thank you all so much. BC101 unfortunately I didn't have the oncotype DX test as they don't offer it here in Australia yet. I hope our health system approves it soon for future patients as it would be beneficial to know what you're dealing with.0
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Last week MO mentioned she was so happy I had BMX as she feels it is the best choice with ILC. anything else is asking for more surgeries and missed tumors. I am grateful that my intuition was overriding a neg MRI and Mammo since the "good" one was so atypical in the path report. It really upsets me that I consulted several BSs and they recommended lumpectomy The MO should be seeing people with ILC first IMHO
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TaniaE we don't get the Onco type testing here in New Zealand either that I know of unless there is a strong family history. Chloesmom my BC team said a mastectomy was not necessary, although I was borderline due to the size of my tumour. They said the way they treat ILC had changed and mastectomy was no longer the first line of defence. Since my diagnoses last year I have had two MRI's which showed no cancer in either breast. They seem to keep a very close eye on those of us with ILC, in my experience anyway. The evidence suggests there is no long term benefit in mastectomy over lumpectomy. Although it does make some woman feel safer. I guess it really is personal choice isn't it and something we could debate for ever. I guess you just have to respect everyones personal choices and be guided by the professionals, even though some of them have very different views.
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What she said is lumpectomy and mastectomy have same mortality so we don't live longer getting a BMX. What she has seen is that people with ILC need more surgeries. She has seen people get a lumpectomy, then another, then a mastectomy as on rechecks things pop up that might have been slowly growing and not showing on scans. I don't know if anyone is doing a comparion and if there is data on this?
THe BS says they track people closely for 5 years as most recurrences are in 2-3. I said that's for ductal correct, but not ILC and she said the data doesn't separate the 2 so the standard for the hospital is 5 years. I replied I wouldn't be comfortable with this in the following 10 years and she said we could talk about that after 5! What are they thinking!?!?
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Please don't misunderstand if it sounded like everyone should get a BMX and that lumpectomy is not good, 2 of my best friends opted to get them and are scrupulous with their BSEs. I had pain and got blown off by the BS. One suggested to my DH that it was "in my head" and another said "if you had co,on cancer we wouldn't take out the whole colon". I would have wanted to weigh in the fact that it isn't necessarily as clean cut as other types in my decision to get the BMX and had some support to validate my choice as I wanted to have no possibility if future surgery I'm a wimp
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No it's fine Chloesmom, it's just one of those things that some people have one way of thinking, and some people have another way of thinking. It doesn't mean one person is wrong and the other person is right. It's all about personal choice - our differences is what makes the world such an interesting place
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The "personal choice" thing is one (of many) reasons I feel like I've been so blessed/lucky with the surgeon and MO that I have. My surgeon laid out all my options for me, and when I said I wanted a BMX he said he thought that was a fine choice--but he didn't push me toward it ahead of time. Pathology after surgery showed that my "good" breast was a ticking time bomb. My surgeon *did* seem a little surprised that I never even entertained the idea of reconstruction, and he still asks me, at ever follow-up visit, if I have changed my mind and it's been almost 18 months since my BMX lol. Nope, haven't changed my mind. Still go flat most of the time, only wearing bra (ugh) and foobs once in a while.
My MO's original plan was for me to start out on Tamoxifen, but when I expressed my desire to have my ovaries (at least) out and go on an AI instead, he said "alrighty then," and sent me to a gyn-onc in his practice. She agreed with me that I might as well get everything out (my mom had uterine cancer years ago--she's fine now,) so complete hysterectomy it was. Then my MO was going to put me on aromasin, and I said I preferred femara, and he said alrighty then, and wrote me the prescription.
Because of all this I always feel kind of surprised when I read about how some of you ladies make completely reasonable requests to your docs and they say "no."
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Chloesmom, I so agree that an MO should be first stop and involved from the very beginning (although I have to say that my breast surgeon probably knows more than the MO, except about chemo dosing). The first surgeon I saw refused to do a BMX, and when I insisted, he offered to have me see a plastics guy (to convince me that recon would be fine after UMX). That is when I fired the surgeon. I might have kept him if he had offered me an MO instead.
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Thank you SoutherMother. I appreciate the feedback on Dr Hahm.. It is always great to get a recommendation. Once I have my surgery I think they will refer me to my MO.
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