TRIPLE POSITIVE GROUP
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LAGO, right with the recurrence studies. Everything I read seems to say that if we make it through the first three years...odds drop off. Lots of variables...but that was my takeaway from lots of pubmed dumpster diving. Im just a few weeks from my 2 year mark. I swear , it feels like I have been dealing with this for decades.
Meglove, good luck with the colonoscopy!
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Lago How do you know whether you are Luminal A or Luminal B? Is it on a report? I had an oncotype dx done because my initial biopsy was er + pr+ her2 neg. My recurrence score was a 28. The Her 2 was equivocal on that report. My MO repeated the Her 2 because of this and it was positive. I have dug through my reports and I can't find anything about the "luminal A or B" Think you might have to put an MD after your name
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bucky - I believe that the 4 molecular subcategories are: Luminal A being ER+ and/or PR+, Her2-, while Luminal B is triple pos, Basal is triple neg, and Her2 type which is ER-/PR- and Her2+.
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Meglove I think the acutual colonoscopy procedure only takes about a 1/2 hour. You are under local anesthesia which in my case knocks me out so I don't remember a thing. Just remember them giving me cookies when I woke up. They should be giving you directions as to what to do and what to eat. You will have to drink this "toxic waste" crap the day before and the morning of. I think you will be eating nothing but clear liquids and jello the day before, then nothing after midnight. Be sure to ask about the pills you take. BTW it was painless. And they give you pictures of your colon after. I did not post these of facebook.
Bucky we are luminal B. It does explain that in the powerpoint but this link has a better explaination.
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Ladies: I'm hearing a lot about colonoscopies here....is this a standard procedure after bc? No one as mentioned it to me so just curious.
Thanks, Arlene
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I turned 50 two weeks PFC. Colonoscopy is part of the turned 50 initiation. All clear. Don't have to drink that toxic waste for another 10 years.
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I'm on the every five year colonoscopy plan based on family history.
Meglove-In between choking down a gallon of that nasty stuff, I drank Emeril Lagasse's chicken and/or beef stock. It is delish and tastes more like actual soup. Ate lots of jello too.
Lago-I asked my onc once whether I should worry most about the her2+ part or the estrogen positive. I am ER+ (40%) and PR+ (14%). On my path report, it lists both of those as weak. The LCIS tissue found on the fist biopsy was 80% estrogen though. After he told me to worry about neither as that is why we have the medicine, and I gave him my stink eye, he kind of said the same thing, that in the shorter term, it is the her2, but in the longer time period, it is the ER+.
I agree that study appeared to imply that after 5 years, there was much less to worry about. I didn't really think that was true. I had planned to worry for the next 25 years! As I mentioned somewhere else, I am having a really tough time with the HER2+ and the "moving on" part. I have pretty much decided I am going to talk to someone soon.
If we really don't have to worry much after the 5 years, wouldn't you think they would look at keeping up on herceptin for 5 years as a precaution?
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Oh, and I should mention that my KI-67 rate is 15%. Path report says that is borderline. Anything over 20% is high and anything under 10% is low. It figures I would be right in the middle.
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And how do you find out if you have the P53 gene mutation? I just read all through my biopsy pathology and can't find anything about it.
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fluffqueen my ER is 30%, PR is 5%. My MIB-1 (Ki-67) is "High proliferation index" >20 I don't know about my P53 gene mutation. I don't know if they test for that or if that's something you find out if you get an onco test. But remember we also have no nodes so that is a good thing. Also you have a smaller tumor, also a very good thing. Stage 1 puts you in a very good situation statistically.
I haven't read about Herceptin for 5 years as a precaution. I thought the trend was to lower treatment to 6 months rather than a year (unless you have mets ).
My neighbor was having issues too with her diagnosis and went to see someone. OMG she's like a changed person. If you need the help get it. This is tough stuff to deal with.
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Hi ladies - Just wanted to introduce myself and say hello! I had a lumpectomy on 9/8 and go Tuesday to the MO and Wednesday to the RO to find out what comes next. I'm strongly ER/PR+ (88 & 81) and obviously HER2+++, but have a low(ish) Ki67 at 13%. So....I'm guessing chemo is in my future?? I'm almost 49, healthy, very active, and doing great until this came along!
Joanna
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Thanks for the info on the colonoscopies.
You guys have way more information than I do...guess I need to get a copy of my path report because I've never heard of the Ki-67. Way too much stuff to know.
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Thanks for saying that Arlene. I have no idea what Ki-67 is either and was feeling pretty ignorant about it. Is it important to know?
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Arlene you should have a copy of your path report. Demand it.
madpeacock I was 49 when I started all this and perfectly healthy/active too. Go figure. Did you have a FSH test for HER2 status. It's more accurate. I only ask because HER2+ usually doesn't have a high ER/PR status and is grade 3. Granted there are women here that are HER2+ that are highly ER+/PR+ (even higher than you) and also grade 2. You just want to be sure. No need in getting Herceptin if you don't need it. I turned 50 2 weeks after my final chemo. BTW I actually look better now than before my BMX. It's along journey but you do get back to being yourself again.
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Ki-67or MIB-1 is how fast the cells are dividing.
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Thanks Lago and Omaz. None of my doctors have ever mentioned this and I wonder if I was even tested.
Hey, how long does it take before your normal sleep pattern returns. I'm almost 17 weeks PFC and still wake up at 3 am and can't go back to sleep.
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My path report didn't have percentages like some of yours did, but my tumor was highly positive for ER/PR & HER2, also the KI-67 was intermediate.
ArleneA - I got copies of all reports from my docs, pathology, any tests like echo, CT,MRI, and all blood tests. I guess I'm a control freak and don't totally trust any doctor, so felt the more knowledge I had the more control I had over my treatment, and it also made me feel more comfortable and confident that I was receivin the best treatment possible, as well as making the life changes I need to to help prevent a recurrence. Also, every one is different with their sleep patterns I'm almost 13 months PFC and I still have insomnia issues, sometimes it because of the pain I have and other times, it's the brain on overdrive.
My DH tells me that I look better and healthier than I did before diagnosis. Despite the residual SE's I feel that I am healthier, physically, mentally and spiritually. Though I have to admit I do have my bad days filled with bad attitude, but they are coming less and less often.
I just love these discussion threads.
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thanks for the explanation of Ki-67 - I'll also be getting a copy of my Path report at next visit (if not sooner). They offered it to me at the time all of this was happening and treatment was starting and I didn't want it....didn't mean anything to me at the time (or so I thought). The Ki-67 sounds like a very important # to know.
My ER/PR is 68/73 and I'm Grade 2 so guess I'm one of the odd ones with a Grade 2 HER-2+.
Geez so much to know.
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My ER/PR is 80/40 and my grade is listed as grade II/III. WTH? It's like they couldn't decide or something!
My grade is Elston-Ellison...don't most of you use some other type of grading system? Nottingham?0 -
The link didn't work for me but in some of my research it noted that they are beginning to incorporate the ki-67 rate into the risk for liklihood of recurrence. It has been a few months since I looked at all that.
I have so many reports now, lol, after my colonoscopy in December, which was normal , they did not send the report. I called and they said they didn't send them for normal ones. I told them I wanted mine anyway, so I have that now with a lovely colon illustration all marked up with notes.
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Here is a link to the question I asked on ki-67 several months ago. There is some good information on there explaining it and how it relates to other pathology.
http://community.breastcancer.org/forum/5/topic/705247?page=1#idx_5
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Let me repost that link so it works: http://community.breastcancer.org/forum/5/topic/705247?page=1
BTW thanks for posting that.
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I updated my ki-67 link to go to pubmed rather than the article.0
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JoAnna: Sorry we missed your post. I am pretty sure you'll be getting chemo - it seems to go hand in hand with HER2+. It is very doable and while not fun, easier than you might have heard. You have a lot of knowledgeable folks here to help you through it too.
Special K: Do you have LE? I noticed you mentioned that you would avoid the sun until you get your sleeve? I don't have LE (and hope I never do, of course) but with me working out outside (I do go in the late or early hours) am I putting myself at risk for LE? I've heard if you don't have LE that you shouldn't use a sleeve.
Thanks, Arlene
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ArleneA - yes, I do have LE in my node arm. It is mild (stage 1), I just finished a couple of months of physical therapy. They are recommending that for working out I need the sleeve/glove on the affected arm, and need a sleeve/glove for the other arm just for flying. If you do not have LE I don't think there is a problem with you exercising outside. The risks are more to do with an injury to the node arm, like cuts or scrapes, and having BP or blood taken. The deal with flying with or without sleeves is opinion driven - some say yes, some say no. My physical therapist has only had one case of someone who had LE caused by a flight in her 27 years of experience. People who already have diagnosed LE is another story. Also you had a SNB with only 2 nodes out - I had an AND so lost more nodes. My SNB on the prophy side was 2 nodes also - that arm seems to be OK.
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Whew! Thanks SpecialK. I need to update my profile because I originally was told 2 nodes but the pathology report (which I still need to get a copy of) says 8 nodes. The surgeon told me the other 6 were tiny grain ones that many times come along when the SNBs are removed (if that makes sense) but they were negative too.
Thanks so much for the response. I find myself so focused on that arm (and definitely don't let them take blood pressure or blood from that arm) and worry about injuring the arm. I've had a few scrapes to the arm but thinking that is almost impossible to avoid just doing normal things like cooking. Weird that we have to worry about this the rest of our lives.
Arlene
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I was diagnosed in August and have just started TCHL therapy on Tuesday. I am very curious as to other people's experience with the Lapatanib. I am miserable. Terrible face soreness/acne, diarrhea, fatigue, etc. Only on 750 mg per day and they want me to go to 1000. Just wondering if anyone else has had these sensitivity issues to the drug and if they were ever reduced in dose, etc.? Hard to know how much of this is "normal" and will eventually level out. Any and ALL info appreciated.
--Betsy
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Hi Betsy, you might want to double check with your onc on the lapatinib. I read that recent studies showed it wasn't effective. I have been keeping an eye on it as I am in the neratinib trial and I know the 2 drugs are similar.
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I am taking it in combination with the TCH regimen. Are you referring to the recent information that it wasn't effective independently?
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