Stage 1, grade 1 and pre-menopausal
Comments
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Shari -- my MO would not give me Zometa either....
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Oh, I think I was plenty hydrated. I was feeling better a couple days after the infusion. No biggie.
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Zoey1,
I am in the same boat as you with diagnosis. I am not doing chemo and about to go on tamoxifen and really dont know wheither to do radiation or not. my onco test gave me a score of 9. Did you choose to do radiation?
thanks
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My onco came back at 9 with 7% re, by reading it, it is baced on my having chemo..that I dont need and tamoxifen. not sure what to think if I really need radiation now. I am about to go on Tamoxifen. and rad.oc wants me to do radiation.
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Jan...an Oncotype DX score assumes you are taking Tamoxifen. So your score of 9 means that taking Tamoxifen reduces your chance of distant recurrence to 7%. The low score also means that the risk of chemo outweighs the benefit. So that is why you weren't offered chemo. Now, with respect to radiation, if you are less than 70 years old and had a lumpectomy, the standard of care includes radiation. Ultimately, it is up to you to decide what protocol you want based on your personal risks, benefits, and desires. Good luck!
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Jan ...I'm only taking Tamoxifen, my choice. You'll know what to do after you weigh all the info. you received out. I'm 51 by the way....
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Hi Jan, if you have had a mastectomy then you don't need radiation as long as your excision margins were clear. If you,ve had a lumpectomy then it depends on your other stats whether radiation is appropriate or not but there are quite clear guidelines for this based on the evidence. What have you been advised? Are you unsure about what your docs have recommended?
Annice0 -
Hi all, I recently had my 2 year check up, mammo and MRI and all clear!
happy dance
Annice0 -
Annice...Yay!!!!! Congrats!!! I will join in dancing in celebration for you!
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Yea Annice--happy dancing with you!
Anyone have sleep issues? I haven't had one good night's sleep since they started OS (April!). I'm exhausted.
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Happy dance Annice!
The rads were easy. Just a pain going every day. I know it did something thought since I have no sweat glands in that breast. I look pretty weird when I sweat alot. LOL.
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Great news, Annice!
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Renee, a really good approach to sleep problems is to use a technique called mindfulness
"Headspace" (http://www.getsomeheadspace.com) uses this technique. You can use this online or download a free app for your smartphone. There is a free "Take 10" programme which is 10 minutes per day for 10 days, and if you want to sign up beyond this you can purchase a subscription. The data is pretty impressive for mindfulness and shows that even small amounts of daily practise show significant benefits.There is even a special Headspace podcast on mindfulness tailored to sleep problems:
http://www.getsomeheadspace.com/News/headspace-active/headspace-active-headspace-on-sleep.aspx
This is just an example, there will be other similar resources out there if you key in the right search terms so you can find one that suits you.
When using mindfulness you need to be aware of 2 significant issues where people sometimes fall down with it!
1) It is not relaxation. It often provides this as a by product but do not use mindfulness aiming for this.
2) "Don't sew your parachute when you're falling out of the plane!" - In other words, many people try only to use mindfulness when they're really distressed or suffering, can't do it, and then say it doesn't work. What they need to do to gain positive effect is to practise daily - it is a skill that only comes with consistent practise! Best also to practise in a routine way (as part of your daily routine, treating it like the task of brushing your teeth).
Hope that can help you with your sleep!
Zzzzzzzzzzzz.0 -
Annice: Yay YOU! Glad you are doing well! I miss the great discussions that were going on in this thread! Perhaps many of us have been busy/away during the summer--I have, but am trying to get back connected again.
***I actually met AlaskaAngel IN PERSON here in Sacramento not too long ago-- she's in town for the summer...;) We met at Starbucks inside a Barnes & Noble bookstore. It was FABULOUS talking with her! I really enjoyed her company & the lively discussions we had concerning all-things-breast-cancer related...especially about cancer research...:)
We "clicked" immediately...was very cool...;)
BLESSINGS,0 -
Thanks Violet...well ladies I also miss the discussions we have on this thread, always happy to help guide newbies and discuss the developments in the BC research world to ensure we are all in good hands and on the right path. Our discussions help me understand where clinicians go wrong with managing many hormone related and well being issues as well as seeing what is done well! I have been very busy with my clinical work and I am also developing a brand new healthcare website which will aim to provide a web based unmet need of quality information and advice in relation to hormone issues, fatigue and well being issues. Be assured that when I launch I will be posting all the info about my site here and hope you will all look at it and give me feedback!
Hugs
Annice0 -
Hi All!
I think some of the great questions and discussions landed in California at the B&N Starbucks! I don't know where the time went, but meeting Violet 1 was pretty dynamic and I'm very glad it we had the chance to share it. I'm over the hill myself, but she is a bundle of energy with an inquiring mind and quirky sense of humor. I left with her encouraging focus on helping others to think critically and learn, for independently managing their individual situation.
It is great to see this thread arise from sleep.... Hope to see some good questions explored here again with everyone!
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Right back at ya, A.A.!!!
Wish you lived closer most of the year!!!
Xo
Ann Marie0 -
hello everyone. i am new here , mine was a little different with two conflicting results regarding my ER. Pathology report says: i was ER/PR + HER2-. Oncotype DX test found out I was ER-. (95% accurate) and said in order for my recurrence score to apply -SPECIMEN should be ER+. oncologist was still pushing aggressive chemo- (i was puzzled about the whole thing). stage 1, tumor size 1.5 cm nodes negative, left MX. Any ideas about this -pls post a reply, kindly appreciated!!! thanks
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Mama46:
Welcome!
WHY is he/she pushng the chemo?! What were your Onc DX scores or score?0 -
Mama,
P.S. - Get a second opinion at the least...someone else to look at your final pathology reports/Onco DX, etc...
Something doesn't sound right..
And I'd certainly hold OFF on the chemo for now...not sure WHY your doc. thinks chemo is called for!?
Tumor size small/ no node involement...Hmmm...
What TYPE of cancer is the tumor? IDC? WHAT did they tell you?
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Check out this unfortunate story...He is not my Dr., Thank God....
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Prob pushing chemo for mama because whevis estrogen receptor negative and chemo is all they got!
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Mama....So the pathologist's report and the OncotypeDX test clearly are in disagreement. And, if the Oncotype DX test is correct and you are ER negative, then you weren't given an OncotypeDX score because the score would be based on you being ER positive. With regard to your pathology report, did it tell you how ER positive you are? Sometimes pathology reports indicate "weakly" positive. Then the question would be how much benefit would you derive from endocrine therapy. Right now, however, you and your medical oncologist need to nail down if you are ER positive or ER negative. If you are in fact, ER negative, then being as they refer to "triple negative"... you might need to consider doing chemo because you would not have the option of doing endocrine therapy. I would ask the MO to have a 2nd pathologist review your case and then have a tumor board look at your case as well. While waiting, I would register at the NCCN's website and look at the 2013 professional version of breast cancer treatment guidelines. There's a little red logo in front of the professional's version. Good luck.
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It's DCIS with microinvasion less than 1mm-stage 1 . will have an appointment for 2nd opinion nxt week. very confusing, being ER negative tested by Genomic lab for my Oncotype Dx-yes , sounds like i have no other treatment if i won't benefit for hormone therapy, but being ER- would i benefit for having chemo???. I actually called genomic lab and asked them how accurate was their testing and they said, 95% accurate. i am not triple ngative
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almost think that i want to do another MX (right) just to be sure... hmmm don't know what to do, just want to be sure...
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i thank you all for your prompt reply and suggestions...
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Mama...I'm quite surprised that Genomics was able to test your micro invasive part of your specimen. I think you need to still determine why the pathology report differs. There is a huge difference in choosing a treatment protocol when you have DCIS with a micro invasion vs a larger invasive component. Get the pathology report confirmed before discussing treatment.
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Mama,
I knew Vora would chime in here--she knows lots...
Smart girl, that one.I'm still confused about your pathology though--I'd ask for ALL tests/reports etc. BEFORE you go see 2nd opinion, like V. said. You said you are NOT Triple Neg...& you have/had DCIS...w/ micro-invasion...but from what I understand, that's a VERY, VERY small micro-invasion AND doesn't always change one's choice of treatment (cuz it's so negligible--as far as it goes).
But, try NOT to panic...it's not a race...more important to take the TIME necessary to make a solid, informed CHOICE for yourself. AND, also please KNOW that we all make different choices regarding Treatments, even w/ the same diagnoses
. You can also have them or another lab RETEST your DCIS. I totally understand WHY you are thinking about doing a MX on the other breast. THAT is what I did--Bilateral MX (or BMX). Low & Behold, they found a simialr IDC tumor in my other (L)breast--even though it didn't show up on ANY scan/screenings/ultrasounds NOR on the 3! SNB's I had on the sucker! BECAUSE, I had VERY, VERY DENSE breasts.
I was adamantly against radiation for ME (why I chose BMX instead of lumpectomy + Rads) AND I knew I was going to have Reconstruction/Implants & I'd have a better chance of good recon. w/ no rads & a better shot at symmetry w/ BMX...;)
PLUS, I didn't want to wonder IF I'd later get cancer in my other (L) breast--so chose to have 'em both removed. SO GLAD I did cuz the IDC in my L breast prob. wouldn't have shown up for a long time.
Because of my Stage 1a/small tumors, I've decided NOT to have Hormone therapy either. We all have to make these hard personal choices...
Just know you have Options/Choices & don't necessarily HAVE to do whatever the Doc. recommends...nor "Standard of Care" (as helpful as it is/can be).
I'd also go to the NCI site like V. said & read up...BUT hard to read up when it seems you aren't even CERTAIN as to what your Final Path. IS, huh?
Good Luck! You'll figure it all out--keep us posted!!!!!
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My s-i-l recommended magnesium to deal with hot flashes. She has a teaspoon in a glass of water before bed, and has helped her sleep. First time I've heard of this (no one has recommended this to me). Have others?
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Mama I may be wrong but I have not heard of people getting chemo for DCIS. I think your case is complex because you have micro invasion and possible ER ?negative. This is tricky so second opinion will be very helpful. As VR says if ER negative then option for hormone therapy is limited. Please keep us posted here on this thread
Annice0
