TRIPLE POSITIVE GROUP
Comments
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I'm right-handed. Cancer was in the left breast.
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cypher Mammos & US are only good as the people reading. With dense tissue it can be more challenging. The place where I had my diagnostic mammo (remember I had blood coming from the nipple and a dense area) said "Suspicious but not typical of cancer." Switched centers. The BS got very quite looking at my mammo. (No US because those jerks copied over the wrong disk). At one point he started to talk about "Breast cancer being very treatable" but stopped because I think he saw my eyes get a little teary. When I went for my biopsy I questioned the radiologist. "he said they were doing the biopsy to PROVE their diagnosis of breast cancer… If that didn't prove it they would do something even more invasive to prove it. So the issue isn't always the technology.
right handed with left IDC/DCIS and right LCIS
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Sitting here getting Herceptin. Got a prescription for tamoxifen today. My ER+is only 26% so the MO says if side effects are bad I can quit. The one that is worrisome is a 1% chance of a blood clot - that seems like a pretty high chance. But they found LCIS in my surgical path, and the MO says tamoxifen reduces that risk by about half. Any words of wisdom, advice, tamoxifen success stories?
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Right handed tumor was in right breast.
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PatinMN My ER is 30%. My onc said nothing about if the SE were really bad I could quit Anastrozole. It is not unusual for triple positives to have low hormone positive levels. (Granted we do have a few gals here that are in the 90's) I wouldn't worry about terrible side effects just yet. Worry if you actually get them. I know women out there that have very few.
My biggest fear was Rads and hormone therapy. Ended up I got a pass on rads and the SE from the Anastrozole isn't that bad.
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Does Tamoxifen (or the AIs) address the progesterone aspect of the tumor?
I keep forgetting to ask the oncologist what my hormone levels came back at (not the tumor receptor percentages).
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Cypher, same thing with me. Clean mammo and I kept telling them I had a lump. On ultrasound, I could see the techs getting very quiet. I'm with you, MRI in my future!
And Ton Lee and Lago, super cute pics. I am inspired and will change mine because I have a fuzzy head now and am pumped!
Patin, there are some common blood tests that they could run to see if you are prone to blood clots. Ask for those (i.e. Factor V Leiden, platelet activation, phospholipid antibodies, etc.) Have you had a successful pregnancy with no issues? If so, you are probably a-ok. But do ask for peace of mind.
I'm a little bewildered. I saw my NP at my radiation appointment today and we were chatting. She mentioned that I needed to get prepared for the hormone-blocking therapy soon. She asked if I'd experienced menopause, and I said yes, and without one dang symptom (I was lucky). She asked when my last period was and I said December of 2010. She said I was "on the bubble" and that I would probably start on Tamoxifen then go to an AI later. On the bubble? I don't even own a tampon anymore...
I'm guessing she is thinking I still produce a good amount of estrogen, especially since I had an easy menopause. Still, it's been 2.5 years. I'm thinking I should ask for some blood work before they make their decision. Plus, I want to get the cytochrome P450 gene chip test done, but my insurance doesn't cover it (even though I work for the friggin company that makes it and I helped them get it through the FDA!!) Anybody on here have that done?
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Left-handed and right breast cancer
Vball, Tonlee and Lago - great new avatars0 -
Thanks, Lago and Pbrain. I am going to ask the doc about those tests for prone-ness to clotting. I am about 4 years past menopause, but my MO starts with tamoxifen anyway, for 2 years, then followed by an AI. He might have explained why in my appointment today, but if he did it didn't sink in.
He did say that tamoxifen actually prevents osteoporosis - so a good SE. Lago, you started right out on an AI? I told the doc today that I am going into this expecting no SE - I think sometimes these things become self-fulfilling prophecies so I hope to maintain a positive outlook on this next step.I was worried about some lumpiness in my "bad" boob. The MO felt them and said it's perfectly normal - glands sort of shrink and harden during radiation. I am relieved!
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Love the new photo, Pbrain! And your eyebrows look fantastic!
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I agree PBrain...I actually think that looks better than the avatar with hair! You're glowing!!
Pbrain, you were ER+...does that mean your ovaries were producing enough estrogen to feed your cancer, but not enough to ovulate? How much ER+ were you?
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Oh PBrain u look great.
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My tumor was ER+ and I had my last period in 2003.
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Right handed--- Cancer was in Left breast.
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Pbrain-- Great Photo
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Pbrain (and PatimMN)I was perimenopausal at diagnosis. My periods were regular but getting lighter. My last period was 2 weeks BEFORE chemo. My mom start menopause at age 51, my sister was finishing at age 53. My onc said at my age (turned 50 two weeks PFC) and family history that I wasn't oing to get my periods back. She tested my esteriol levels for 5 months. Yup… I'm at prepubescent male levels
Seriously you might want to ask. I know I didn't want to do Tamox because my mom had issues with blood clots.Pbrain your photo is awesome. I so wish I had a nice shaped head to go with my smile. I looked like Gollum bald. I believe I've posted that photo.
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Lago. Wow I must really be an odd case. I was 73 yrs old when I was diagnosed...long past menopause. I am 100% ER/PR plus Her2/. My MO said it was better to have a high ER/PR %. I get so confused.. From your research what is better high ER/PR + or low ?
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This is what I believe the thought is:
High ER is "better" because that means they have more drugs to fight/stop/cure/etc. the cancer. This is why triple negative can be so scary. Once chemo is done it's not like they have 5 (or 10) years of AIs to keep them NED.
So basically you have more guns in your arsenal to fight. With triple negatives, if the chemo gun doesn't work, then they've got mets and mets sucks.
Now the lower ER+ you are the more like being triple negative or HER2+/hormone negative you are. Prognosis for both of those are not as good as being triple positive. Note that being hormone positive only has the best prognosis. I'm sure being able to fight with something for years (hormone therapy) is part of what makes this a better prognosis. (Also tend to be less aggressive but not always.)
But your MO would know before I would. BTW I know an older woman who was triple negative. Now that is really unusual. I think what's less common for you is being HER2+. I'm not sure where I read this but I do believe HER2+ is more common in younger woman… but I'm not positive of that fact. Something to ask the onc.
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Pbrain, I'd like to hear more about this stuff - cytochrome P450 gene chip test -- ???
Lago, that's interesting and I hope true as I am highly er/pr+. however I thought I read that women chemo may not be as effective for those of us who are highly er/pr+.
re the MRI-- they said it was an "area of enhancement," something like that. They did see something on the US (last time) and I do feel like I owe a thank you to that US tech, as she was very diligent. IT didn't quite seem like cancer ot her, but she wasn't quite sure what it did seem like, so she persisted.
This time around, there was nothing in the MRI in May (supposedly). I mean, other than the cancer, but this is someplace else. It seems really unlikely to me that it's actually cancer b/c this is the same boob that was just nuked from dec-jan. I would probably be more concerned if it were someplace else, actually. Though I suppose the point could also be, maybe a different tech would read it differently. Sigh. It's all so ... complicated and scary.
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pbrain - is this the CYP2D6 Tamoxifen metabolizing test?
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Ah shucks, thanks guys. I have kept most of my eyebrows, but now PFC I'm losing my eyelashes. Sob...sniff...
TonLee, they never told me how strong my receptor status was. I need to ask my nurse navigator. That's an interesting question. Let me see if I can find out. My hospital has my records online, and I can see most of them, but the sugical/anatomical pathology practice used (and anesthesiologists) were seperate entities, so I can't see that info.
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Cypher, the cytrochrome p450 enzymes reside in the liver and they are responsible for a lot of our drug and toxin metabolism. We all have them, but they can be genetically different in people. What I mean is you could have a cytochrome p450 enzyme type that metabolizes a cetain drug very quickly or efficiently where my CYP450 enzyme metabolizes that same drug very slowly or even not at all. So while we all have them, some may work better in you than me. That explains why some women do just fine on TCH and I ended up in the hospital after 1 treatment. I must not have cytochromes that metabolize something in that chemo cocktail very well. But my boss had 6 treatments over 18 weeks and never missed a day of work.
Roche (the company I work for) cleared a blood test a few years ago that tells you genetic information about some of the common cytochrome genes. If you have a certain one, you might be faster at metabolizing (or clearing out) a drug. Where this test really shines is with certain drugs like tamoxifen and some of the antipsychotics. It can actually tell you who will metabolize tamoxifen well and who might just not metabolize it at all and it does nothing.
So it is good information. But doctors don't always know what it means. My MO couldn't run it to see if I would be able to tolerate TCH because there isn't any real data on that. So the insurance payers don't cover having the test done. Since you only have to do it once (your genetic type doesn't change during your life), it is expensive. And it usually isn't covered. But I want to know if I will metabolize tamoxifen so it helps me, or if I will just let it roll through my body and out the other end. :-)
I think some women on this board have had it done. I think it is good info because you don't want to take something for 5 years that due to your metabolic abilities is doing absolutely nothing.
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K, yeap, that is the one. Did you have it done? What did it tell you?
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pbrain - I am surgically post- meno - hyst/ooph about 12 years ago, so I went straight to an AI - first Femara, but switched after 6 months due to a trigger thumb which has resolved on Arimidex. Now my hair is thinning, lol! Its always something!!! Plan on asking my onc if switching back to Femara will improve the hair - I would rather have hair and a sore thumb, ha! I am tolerating the SE decently - have the usual joint pain, but Tamoxifen has that too. I don't make much in the way of estrogen anywhere else because I have had mega hotflashes for all of those 12 years, even on HRT.
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Oh and one more thing and I'll stop yapping and hit the sack. Any thoughts on starting a bisphosphonate after treatment? I haven't been counseled on that, but I sure as heck want to keep my bone turnover down. :-)
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pbrain - because I was osteopenic prior to dx, and had loss after treatment, my onc put me on a Prolia (not a bisphosphonate but a monoclonal antibody) injection every 6 months. I had reflux surgery in '95 so cannot do the oral bisphosphonates. I have had 3 injections and had no SE, but I believe that it is for use in post-meno peeps only. My onc likes it because it is preventive and rebuilding. There is also a school of thought that these types of drugs help decrease the possibility of bone mets.
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OK I had an ablation done in 2009 or 2010 would have to look it up. For trying to stop periods anyway it took me down 3 days out and it wound up not stopping my monthly it was lighter and not as long but still had it anyway since chemo I have not had one at all what i am wondering is there anyone that had this done too before breast cancer ? did your monthly come back after time after chemo? I am now 45 years old and before chemo was spot on time.
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pbrain - I had the Tamoxifen PredictAR test a couple of months ago. I acme back with one allele that does process Tamox (*1) and one that doesn't (*4) which makes me an intermediate metaboliser. The recommendation on the report was to consider higher dose of Tamox or consider AIs.
My MO "doesn't believe" in this test so no action taken as yet and I'm still taking 20mg od of the Tamox (although every few days I take two to make me feel "better"). I'm seeing a new MO on Tuesday this week ;-) Will see what his opinion is...
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Pbrain, I asked my oncologist about that test and he didn't think it was too reliable. Now obviously you know a WHOLE lot more about it than I do -- I couldn't really counter the argument or even understand it. The fact that you think it's reliable makes me inclined to do it, even if it's out of pocket. Any idea how much we're talking about here?
Also, bisphosponate? Why that?
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I just don't get these MOs saying this test is unreliable. It's a genetic test for goodness sake.
You have two alleles sitting at that position in your DNA. One came from your Mum and one from your Dad (mostly, but this is not a genetics lesson...). This test tells you what alleles you have. Research has already shown which allele combinations enable or don't enable metabolism of some drugs, including Tamoxifen, by the body.
I just can't figure out where the unreliable bit comes from... I guess it may be that other parts of our DNA also play a part in metabolising these drugs, but equally they may not.
So what harm is there in going with what we do know and offering women who are intermediate or poor metabolisers different treatment options?
Here in Australia the test cost me $100.
Bisphosphenates - they strengthen bone and can prevent bone mets (evidence there but research ongoing currently for early stage) or treat bone mets (trials already done and proven).
Jenn0
