TRIPLE POSITIVE GROUP
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chachamom--Hi there and welcome!!! The FISH test was neg for Her2 for me at 1.2 after my initial biopsy. (under 1.8 unamplified, 1.8 to 2.2 borderline and >2.2 positive.) Because of the small size of my tumor and being 100% er and 97% pr the thought was that I probably wouldn't need chemo, but an Oncotype dx was ordered and my score was a 28, (high intermediate risk)19% average rate of distant recurrence with my Her2 being equivocal at 11. Positive starts at 11.5. My MO ordered an IHC test which came back positive for Her 2. My MO told me this happens rarely where you get so many different results. and.....he did say the FISH was the "cadillac" of her2 tests. So...... my case was brought up to the breast cancer review board at the hospital and discussed. Chemo was a definite because of my score, but the Herceptin was not. A couple of MO's didn't think I needed Herceptin, but the majority did, including my MO. The bottom line was that I did have one test that was positive for Her 2 (although it might not be the most reliable) but it was positive and that was we decided to go with. Good Luck and Best wishes with your treatment
!! Tests can be so confusing!!
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tonlee--Sorry to hear of your back pain. I hope you get some answers and relief. FYI.....I exercise alot!!! but I am by far not as in good as shape as you and I go through periods of terrible low back pain, esp. after spinning. Some days it is real intense, like uh oh.....is this something I should worry about....not going there..... and then other days not so bad. I have been taking Anastrozole for 10 months now and I would think I would have reached my peak of joint pain and stiffness by now, right? or does it get worse over the next 4 years or more? hmmmmm.... 0
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Bucky I'm now 15 months on Anastrozole and I can say that the joint stiffness does not change unless the weather does. I'm a little stiffer when it's colder. I also find that moving/exercise really helps. In the morning my toes are stiff but once I've done 3-4 squats they are better (do a total of 60 every other days).
I would have back issues because of my shoulder (now 2 car accidents) but because I strength train my core I don't. Granted I'm not match for Tonlee.
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lago ha ha ha !!! I am no match either!!! It is nice to know that for you it has not worsened. I believe once I can work on my core more, it will help my back. keeping fingers crossed
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Hi, Bucky!...and thanks for the info. Very confusing, indeed! Can I ask how large your tumor was? If its over 5mm, not so controversial.....but mine was 3mm. The only difference between Dance and mine that I know of is our age (I'm 57)
..and Dance: I do wonder if my Oncotype score is valid if the HER2+ is not being counted as positive, but in actuality is.
Still waiting for a response from my MO.0 -
chachamom - I think that is the only difference, except I think you said yours was multifocal, right? I know they go by the largest tumor, though, so I'm not sure that plays a factor at all.0
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chachamom and dance another BC.org woman I friend-ed has multifocal. She said that in her researching that multi focal was more likely to spread but in her case her nodes were clear.
I don't know how true this is. I haven't done any research on the multi focal issue.
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Ok, so I am coming in late to the HER2 talk, but here's my story:
One of my tumors was positive, the other negative (they didn't test the third they found at my mx). My MO sent for an Oncotype test, which came in at 51 30-40% chance of recurrance), which makes me triple positive. I have no idea which tumor was sent for the Onco and as far as I know, my insurance covered it. (haven't received a bill yet and that was back in April)
Ton, hope your back gets better.
Iago, what is meant by multi focal? For example, I had DCIS practically everywhere in that darn boob, plus, three tumors: at 11 oclock, subareoalar and 10 oclock. Would that qualify? Just wondering.
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multicentric breast cancer
Breast cancer in which there is more than one tumor, all of which have formed separately from one another. The tumors are likely to be in different quadrants (sections) of the breast. Multicentric breast cancers are rare.
Breast cancer in which there is more than one tumor, all of which have arisen from one original tumor. The tumors are likely to be in the same quadrant (section) of the breast.
* I mixed them up. It's multicentric is more likely to spread. My friend is multicentric.
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Yes, Dance, mine was multifocal, the largest being 3mm....funny they don't indicate whether "several" multifocal is 3-7....7-15........or more? Just that the largest was 3mm
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Well then, I really need to ask my MO about this because of the three tumors, one was HER2+ and one was not, which makes me wonder if the three all spewed from the same tumor. All three were in the same quadrant, and my MO thinks they were all individual tumors. Given my high Onco results, makes me a bit more paranoid.
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Hi all! Back to the thread of do you say had or have cancer, I think I found my answer on another blog. NED/BAT. Stands for No Evidence of Disease/ Beyond Active Treatment. Seems to fit better than the have/had classification.
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Moni I say NED to those who understand the term. To others it's I had cancer.0
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LAGO - Can you ask your friend how long did she have to have the Lupron shots and which AI did she end up with?
Thank you for the defination of EF. You ladies are a wealth of knowledge!
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She's still on them. She's on Anastrozole just like me. She had to do rads first. They started her out with the monthly shot to see how she would tolerate then I believe she moved to the every 3 month shot.
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LAGO - thank you for such a quick response. I find out which AI on Friday..I wonder if it'll be the same. Thanks again.
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Omaz,
Are you talking about the CYP2D6 and CYP3A enzyme studies?
Unless I've not found research to the contrary, these are not reliable indicators. While it looked promising in 2010, by 2011 they were able to determine these two enzymes do not in fact determine Tamoxifen metabolization. Which is why as far as I know, there is not a single reliable test right now that can prove one way or another who it works for. All they can do is look at the # of women on it, how many have their cancer come back (not working) and compare it to how many stay cancer free (compared to the years before Tamox).
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For my response to people that ask is I am ok, I now respond "I don't know that I'm not, so I am considering that ok." Seems to make them happy and doesn't enlist a lot more questions.
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FluffQueen0
Great answer...they never believe me when I say I'm okay anyway. It's almost as if they want a longer answer but not the whole huge answer (yikes). Question please for everyone. I am starting my chemo tomorrow and just received the "referral in the mail that lists all the drugs and IV and some mumbo, jumbo.....but I can't find herceptin on the list. Doesn't the herceptin start right away with the rest of the chemo?
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Blythers I got my Herceptin with chemo but a few did it a different day. I would call though. If there's one thing I've learned is sometimes things can mess up. Best to get it corrected early.
When I went for my biopsy I was told US guided. I made my appointment then they gave me this phone number to listen to the procedure. The tape described different type biopsy from what I was told. I called the BS's office and the idiot on the phone said "yes you are getting a core biopsy." Day of biopsy I'm sitting there in the gown waiting for almost an hour. Why? because the radiologist caught the mistake and they had to set up the room for the US guided biopsy.
So mistakes happen but are usually caught. Best caught sooner than later.
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I started chemo with Adriamycin/Cytoxan only x 2 (supposed to be 6x). Herceptin was given with the Taxotere/Carbo/Herceptin for my third and final dose of chemo. Always good to check though, as Lago says stuff happens. I know my insurance co does not approve anything even slightly in the future!
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TonLee - Yay - we can lay that idea to rest, you're right! Here are a couple recent publications - (c:
They all evaluated 20mg and concluded that "This may suggest that endoxifen plays a role at low concentrations, but in general, tamoxifen is being dosed at a level that is more than sufficient for even poor metabolizers to derive full benefit from this drug." in http://jnci.oxfordjournals.org/content/104/6/427.long
and
"The results do not support the hypothesis that CYP2D6 genotype predicts clinical benefit of adjuvant tamoxifen treatment among postmenopausal breast cancer patients. " in http://www.ncbi.nlm.nih.gov/pubmed/22395643
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I had carbo,abraxane and herceptin first than my BMX, after surgery had more chemo AC x4 no herceptin at that time..when finished with the extra chemo Herceptin continued with a total of 52 tx of the Herceptin ..last herceptin June 19 th..
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TonLee...With regards to the metabolizing...endocrine resistance seems to be the boogie man in the closet. Recurrence is a hell of a way to figure out that we are resistant to our tamoxifen!! There are tons of contradictory studies, all seeming to say "we don't know who tamoxifen works for and who it doesn't work for".
I am not sure if you are into natural supplements at all, but there is lots of research on pubmed about flavanoids, quercetin etc helping to "sensitize" those who are or become, endocrine resistant. So, since I simply cannot tell if my tam is working ( hot flashes are NOT any indicator) and my hormonal panels are borderline - it seems to be a crapshoot. I made the decision based on my research and my onc's opinion to continue with tamox for current goal of 5 years; monitor hormonals; then switch to 5 years of an AI. I make sure my diet is high in flavanoids (citrus) and I take quercetin for some warm fuzzies.0 -
Im more confused than ever about whether to get an ooph or not. My MO said no reason to & it wont impact recurrence chances. The gyn MO I consulted with said same thing but he is willing to do it. I had pretty much made up my mind to have it done. But today I had a consultation with a new MO -I will be switching in november when herceptin is done - and he said don't do it. He said risk of recurrence is the same with or without. Now that I have opinions from 2 top MOs from 2 major cancer centers, im really having second thoughts. He said there are 2 main reasons to get an ooph: BRCA+ or cannot tolerate tamoxifen. Neither is an issue for me.
TonLee & anyone else who has had the ooph discussion with an MO, what was their feedback? I don't want to make a decision out of fear, but I want to give myself every bit of ammo possible.0 -
Thanks Gee. That's good info..going to look into it
NJ,
Are your periods back? (Sorry if you already posted this. Short memory.)
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NJ,
I'm not sure why the MOs are saying there isn't a difference....the data shows again and again for WOMEN WHO ARE PREMENO...survival is significantly improved following adjuvant oophorectomy and tamoxifen vs Tamox alone.
You can find the studies/data pretty easy...start here.
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Happy Anniversary to me...One year ago today, I finished chemo!
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Happy Anniversary ArleneA.....many more...♥
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shore - I am in exactly the same position as you...all MO's (at top cancer centers) said no need to do an ooph, that if you do not have periods then tamox is doing its job
my gyn said she would do it, she has not problem with it and she said she does it all the time for bc patients
i was not tested for brac - i am being recommended for genetic testing now
my concern, along with the studies tonlee is referencing, is ovarian cancer - i thought there was a higher risk of ovarian if you have had bc?
on what to say to ppl - i just tell them i finished treatment and doing well, even the stupid ones who asked me what my "prognosis" was
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