CALLING ALL STAGE I SISTERS
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ELIMAR----my tee shirt says FOCKTOBER......JUST ASK ME.....you have no idea how many people asked me....and i gave them an earfull.Its all about the pinkwashing and Komen!!!!!
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granny, I'm not as militantly against all the Pinkness, but still find Focktober (or Foctober) pretty funny. Good for you, if you are making people aware about "awareness" vs. research. prevention & cure. The scale does seem a little heavy for "awareness," light in the other areas. I'm no pom-pom girl for Komen either.
Fearless, At first glance, your Dx does look like you probably would get a low Onco score, BUT there seems to be a small percentage (I really don't know how small) similar to you in Dx that will come back with a surprisingly high Onco score. Why, I don't know? Of the similar Dx ones that I have heard of that came back with high score, I even wondered if those high numbers were wrong. ??? I can't remember if any of those surprisingly high got a second test. But the OncoDx test is specifically for women with a Dx like yours (small, low grade, hormone pos., no node) so I'm not sure why the doc would not send off a tissue sample? I have to ask what the others have already...was your tumor extremely tiny or did you have no actual mass of ILC?
Then again, you question was why your doctor convinced you that you didn't need the test? I don't know what he/she said; or were you being a nice, non-demanding patient? Sometimes you need an extremely unyielding look on your face when you ask for the test? Sometimes it's just in the staredown.
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Go Granny!
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as most of you know im an activist....I hate what Komen stands for...I hate the pinkwashing of BC....I hate the fact that everyone is aware and there seems to be no $$$$$ for the cure/vacine.....Too many people are lining their pockets on all of our back....Just tryin to get the word out one person at a time....ok more then 1 but its happening and it makes me happy...
find a damn cure/vacine....
end of rant.
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I'm right there with you!
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I'm with you too Grannydukes💪
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(((HUGS GRANNY)))
♥
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This is info on those for whom an Oncotype DX is appropriate:
* Those diagnosed with Stage I, II, or IIIa invasive breast cancer
* The breast cancer is ER+ and HER2 -
* Those with no lymph node involvement
OR
* Those who are post-menopausal with ER+, HER- breast cancer and who have some positive nodes.
The whole reason for the test is to predict the risk of distant recurrence. While in general, small early-stage tumors with clear nodes and clear margins should be low risk, there are some folks (like me) who turn out to have a moderately aggressive or aggressive tumor. Based just on our staging, we wouldn't need chemo. The extra info provided by the test gives us additional info on which to make decisions.
Hope this helps!
On another note - IMHO while it's the job of physicians to offer opinions about the risk of recurrence based on tests, the ultimate decision about what to do is ours. I looked at my numbers two ways. My score was 27. That meant a 15% chance of recurrence. Chemo would drop that to 10%. While that's an absolute difference of 5%, the relative risk difference is 10/15 (2/3). Meaning the risk would decrease by 1/3 by opting for chemo.
Bottom line - get all the info you need. Ask people you trust. Think about what's important to you and make your own decision.
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Hola! Haven't been on for awhile but had to pop in since I miss ya all....too much to read on here right now so I can't comment individually but will try to keep up again...i had another 6 month check up with breast doc for ultrasound since can't get mammo any longer she said all good but I have a huge hernia that will have to be taken care of sheesh and crap:)
Other than that I am still kookoo0 -
I also didn't have the oncotype test. I had one positive node, identified by biopsy, so I had to do chemo no matter what. If that biopsy had been negative, I may have been offered the oncotype test.
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* Those diagnosed with Stage I, II, or IIIa invasive breast cancer
* The breast cancer is ER+ and HER2 -
Thats me , but my DR didnt order. I would love to know what % ER PR I am . MassGeneral simply said :
"We dont quantify it. You just are !"0 -
Annette, Good to hear from you. Stay in touch.
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purple32 ~ My ER/PR % numbers were in my biopsy report.
Annette ~ Hi, sista! So very good to see you!! Missed ya!!0 -
Hi ladies,
I hope you are all well. I haven’t posted in this thread in quite some time but I thought I would stop in to say hello. I am halfway done with the AC portion of my chemotherapy…yay! I cannot wait for it to be over and move on to the Taxol portion. I lost my hair on Wednesday night. Haven’t lost my eyebrows yet and I’m hoping they hang on! I wanted to share this e-mail I received from one of my students (I am a graduate teaching assistant to an undergraduate intro to psychology course at my university). It totally made my day and lifted my spirits. It reminded me that there are people out there who really care.
“Hi Justine! For starters I'll introduce myself. I'm ------------ and I am a student in your 2 pm Thursday recitation. I really wanted to stay after class today to talk to you, but I was in a rush. I don't have a problem or a question with any of the material in particular. I wanted to tell you how absolutely inspired I am by you. Seeing you come into class so positive and smiling really resonates with me. I think you are an incredible young women and I have the upmost respect for you. I'm a freshman here at URI and when I went back to my hometown in upstate New York 2 weekends ago, I could not help but tell everyone your story. I know we've only had 5 classes so far and we haven't talked personally but you have impacted my life so positively. I hope you don't take any of this in the wrong connotation but especially after what you had said today in class about how you have to have a positive outlook on all of it, I had to tell you that not only with you'r family and friends supporting you through it all, you have students that are behind you every step of the way as well. I hope you have a great weekend and hopefully next class we can make time to talk!”
Wasn’t that just so sweet? It was so uplifting and nice to hear her kind words!
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Valjean
RE ER PR %
I asked for my biopsy report and there is no percentage #. However, I do seem to recall there were some numerals...single digits/ not %. What they were , I forget , but I posted somewhere on BC.org so I'll be searching ! I just looked at my copy of the biopsy report and I dont see those numbers, so I must have had another paper as well ....cant imagine where it is !
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A bit more about OncotypeDx testing. They DO the test on women with 3 or fewer positive nodes now, with the result accuracy pretty much the same as it is for women with no nodes involved.
Also from the Genomic websire:
- 33% switched from chemotherapy + hormone therapy to hormone therapy alone based on a low Recurrence Score result
- 4% switched from hormonal therapy only to chemotherapy + hormonal therapy based on a high Recurrence Score result
So, that should be a smal relief (Fearlessfoot) that when the doc said no chemo for you, it was not that likely OncoDx would change that decision. Still, if you want to rule out that you do not fall into the 4% who get their treatment switched, you could still have the test done, couldn't you?0 -
Hey, Annettek! Good to see that the goat is still airborne!
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And Three (3) came home.....how i missed all of you.
Annette-ya gotta take care of that hernia before you come to NY...
Val/sista glad to see you show up here...its not the same for me without you.
And Justine...what a beautiful letter from a wonderful boy.His mother should be proud of him.....We are proud of you....
(((((((((((((((((((((((((((((Sheila))))))))))))))).
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(((Annette))) (((Val))) (((Sheila))) (((Granny)))
Missed y'all...0 -
Just- welcome and what a beautiful gift you received from your student:))) BC brings out the best and worst in folks in my experience...just about like any major life event.
As for the Onco test- jury is still out on exactly what the eventual effectiveness the test will have and what demographic it will best serve. It is like a lot of diagnostics in that its initial aim and what its approved for often vary greatly from what it lands up doing best. The more data the better when it comes it to personalized medicine, which is where everything is pointing to as the future of true medicine. And that is what the company is doing now that it has been approved by more insurance companies and governments...is gathering data that would have been impossible to obtain. And make a profit - a hefty one, while doing so. I haveno qualms over a company making money for witout free enterprise we would have no new treatments... but these guys are making an enormous amount of money, ostenibly to conduct further research, mostly using materials received from their patients and bioanalysis (computers). In the spirit of that, I would advise anyone who is on the fence regarding chemo either by their numbers being in the gray area or their onc's strong advice...go with what YOU think is right and do NOT depend on this test as the endall on a major decision. It is simply too new and too statistical, and we all know about statistics. That's just my opinion.
Elimar! Not only is the goat flying but attempting to soar!
Granny- yeah...i do, its a bit worse then we thought..went yesterday and now i need a another damn CT scan as it appears there are two in there and doc wants to know what he is facing when he goes in there. It has been interfering a lot with me when I eat too much- it literally pops out...or did for the first time last week...anyway, that is next up on the plate ARGH
Hello Joan:)) I miss you all and plan on popping in more:)
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Well Annette----so nice to hear your voice.and i do ...really i do.....
(((((((((((((((((Joan)))))))))))) we have been missing eachother...
Do we dare try to make a swift plan????Im home for awhile....could try to round up a few sistas for on the spir of the moment...like 2 days before...could be kinda fun.
Val...honey...ya gotta show up!!!!!!!!!!!!!!!!
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I'm around here somewhere, Granny...
As soon as I kick this latest setback, I'm going to see you wherever you are....
promise! And the more sisters, the better. You can get to my house by train if you want, or we can head to NY once again.Annette, sorry you have to deal with more medical stuff...there's never a good time for any of this. Hugs...
Justine, your positive attitude shines through in your posts. Thanks for sharing your lovely letter.
I was able to share with some of my students last year while working through BC treatments; and it seems some of them already had loved ones dealing with it. We just never know who will touch our lives, or who we may touch.0 -
Aw, K, I have so missed you! And, Joan, Sweetie, you are just the best! I am getting all misty-eyed again wishing I could meet up with you two, Sheila, and whoever else goes along on your meet-up. Oh, well...... remember what I told you before, K, when you all hug-it-out, I'm there, too! Remember?!? Be sure to make room!
justegan ~ What a lovely letter you received. So special. So caring. Hugs to you.
Annette~ How is your beautiful Mom doing? I can still see those pictures you posted of her near her/your pool. I miss my Mother so very, very much.......... sigh....
Hey, E, my DD posted this on FB: I wish I had the picture, but not so talented in posted something other than a regular photograph:
I love Fall. It gives me a chance to
sit at home and watch the World Series.
Just like the Yankees.
(just an inside joke here)
Getting near bedtime here, off to visit others before I hit the hay!
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elimar and 301724: thank you for the helpful info on OncotypeDX! My tumors were indeed fairly small: 5mm, 4mm, and 2mm (just on the right side), SNB showed no nodes affected, and I had a double mastectomy. (after the BMX the lab showed the left side was completely clear but with ILC it often returns on the other side, so I am still glad I did it for prophylatic reasons).
I am going to ask my onco doc about what has happened to my tumors. Where are they now, saved or destroyed, and if saved how stored? Do I still own them or have I ceded my rights with whatever I signed at the hospital and once they are out of my body? I was vaguely aware of these issues but at the time, didn't focus on it. However, I just read for my book club "The Immortal Life of Henrietta Lacks," by Rebecca Skloot which brought to the forefront the question of informed consent, cell line ownership, etc., but more for me, the issue is if I were to have recurrence in the future it would be good to have the genomic info about the first tumors, I would think.
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I got the addendum to the biposy. It read ER8 PR7.
Even my BS at MGH did not know wheat it meant.
She called the radiologist here and he had to do some calculations to covert to % , but said he believed it meant ER 100% and PR " close to it ". I went thru meno 13 yrs ago. Hard to believe ER 100%.
Oh well. Not sure what good that info did me !
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Valjean....hello buddy...it was mom's birthday yesterday and we had a blast...
as far as what became of my "tumor" tissue...I signed off on everything in the name of research...hell, if it helps the effort to save just one, it is worth it...the pathology is recorded all over the place....I even had one of the onc's ask if he could have my urine...! Sure, take it.
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I think most hospitals keep the tissue slides for quite some time. Then, if it returns they can compare.
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Mine was 95%-100 ER+ and 10-15 PR+. It was my understanding it has more to do with how many receptors you have more than the length of time from menopause, although I could be mistaken. I'm still learning.
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. I'm still learning....
Who isnt ?!!!!
It would be nice if our DOCTORS could tell us !
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I was just watching Dr. Oz and they had Dr. John La Puma on and he said that they don't teach anything about nutrition in medical school. Do you believe that? It plays such an intregal part of our lives and they don't teach it. And doctors don't teach us about nutriton and our medications because they either don't know or they don't want us to question them. It's like the old joke - you know the difference between God and a doctor? God doesn't think he's a doctor.
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