CALLING ALL STAGE I SISTERS
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I am very surprised to hear 9% thrown about as well. I also was at a teaching hospital and understood that there are many different types of percentages thrown around - the one you want is absolute benefit if I recall correctly. With a stage 1 DCIS, I am very surprised to hear chemo recommended unless there is something like it was 6cm that we dont know.
I also have IDC and was told that chemo would improve by 2-3% as well with at least 5% risk of damage from chemo. One in six people end up in hospital or ER due to chemo, it is not to be taken lightly. That said, many people handle it very well. I did half of it and through reading and discussions with the docs came to understand there was too little statistical benefit with an ER+ cancer.
I hope they can clarify this for you. All these decisions are very difficult. Yes, the oncotype may well put you in the intermediate grey area but it is only a part of the decision making process.
I was intermediate everything - made me crazy.
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Thanx for the post!! I have 2 grlfrnds that just recently went thru chemo(both stage iv) I def. know what damage it can do. I think thats the reason ive been scratching my head--- My largest tumor was 1.3 cm---and i had bilateral--- I understand every single one of us is comletely different and im so glad ive had this forum to relate.! Thank you
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melmes....remember that a lot of us on these threads are here because we have had a problem or two...most people who have no issues with tamoxifen, prognosis, agreeing with their doctors etc are not here because.....it is not an issue for them. Do you know what I mean ?(not a very good explanation for an English teacher!)...
ubnsmiley- my situation is similar to yours (but I had IDC)...and I am now single ....my team (surgeopn, oncologist, radiologist, GP..and me) all had the same opinion...surgery, (Take a big piece I told them so they did and I have great margins), radiation and tamoxifen. My heart attack a month ago has ix-nayed the tamoxifen but I do not regret my decision for no chemo...figured for how sick it might make me and for my prognosis without it (it would only change by 3%), I was NOt putting myself through it....my radiologist did, however, say if the difference was over 7%, he would likely suggest I give chemo a solid thought or two...
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I haven't made my decision yet. I had both breast removed so radiation is OUT. No history of breast cancer in the fam. brc test neg.--Of course, im still going to try and overload with info. Im healthy and 43---I believe i'll increase my yoga! Possibly cut out my m&m intake as well.
Thank you, Also want to add that I've been going thru the "change" for 5yrs now. When i was told that tamx would give me hot flashes....well, needless to say i would love the idea that this drug just may put me in the post menapausl stage---this, I would welcome!0 -
ubnsmiley- I was also perimenopausal when diagnosed...do me a favour and have your cholesterol checked if you have any history of heart or high bp in your family. We ar epretty sure tamoxifen caused a blood clot and caused me to have a heart attack four weeks ago....and everyone I have met with befor eand since are shocked because I am a healthy, happy woman who does not smoke, eat salt, drink much or eat a lot of m+m's (though I admit the almond ones always accompany me when I fly!)....Got to admit..even though I used to want to be hot...I do NOt miss the hot flashes tamoxifen gave me....or the lack of sleep. I have been off it for two weeks exaclty and I have slept very well and very deeply the last week...(but until the heart attack, I was willing to put up with it all)..guess the point here is that you need to weigh the pros and cons and risks to your overall health right now....
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Hey Sandee, Everything seems to be OK as far as choles/bp---Im waiting on the hormone levels to come back--im always interested in those! Along with the hotflashes, my night sweats are never ending! I dont think ive slept straight thru a nite in years!! Just gotten accustomed to it. Having lunch with a friend that's a doctor at Vanderbilt--in cancer research--I'll tune you in tmoro! Hate t hear that u suffered a heartattack--awful, sounds as though you're doing well now. I hope.
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ubnsmiley- I am the canary in the mine....and came out singing the other side so all is ok. Just want to head others off in at the pass if possible. My levels are menopausal except estrogen( 111 (out of around 330?) so I am going to fly without a parachute for awhile and then retest it in July to see if 13 months has made a dent in my estrogen...and then decide what to do...I am grateful for the sleep these days though..could also be the heart medications knocking me out! something to be grateful for, hmm? Look forward to hearing what you friend has to say!
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Sandeeonherown: So sorry to hear of your heart attack. They're pretty certain it was from the Tamoxifen? Yikes! I've had multiple episodes of phlebitis in the lower legs so Tamoxifen wasn't a good idea for me. I've been taking Arimidex for a week and I'm keeping my fingers crossed that I tolerate it well so we don't have to come up with another plan.
Take care!
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tina- the cardiologist wrote "Family history+ breast cancer" as the reasons for my heart attack...and as soon as the oncologist heard I had had a heart attack , his nurse called and said STOP TAMOXIFEN right now....so yeah....seems pretty clear it caused the blood clot...not to say I would not have had a blockage eventually as one area was about 705 blocked...but apparently it can cause 'unstable placque' to form blood clots so I am no longer a candidate. We are nowwaiting until the summer when I will have my estrogen level retested....and then decide if I wait longer or go on an AI....after the side effects with tamoxifen....I will be a lot more hesitant to put anything else in my body...already reeling with 5 meds for the heart attack...keep me posted on how you tolerate the arimidex...just in case!
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Newbies, I could not find one with an "S" at the end. 0 -
hi all- made it through the tests- with a help from an ativan- hubby wanted to cmoe and i said NO I DO NOT NEED YOU...and then started crying so he came ...which was good since he encouraged me to take the ativan and it had me asleep through waiting for the tracer stuff to gothrough me and then through both the PET and CT scans. I find out tomorrow ARGH and then I get the full blood panels including hormonals so I can see how my alternative AI regimine is working...last numbers were awesome and I hoping it maintains. I hope you all enjoyed the thai lunch after the tests- of course when the owner saw all of you scarmbling over to the food line he tacked on extra charges but well worth it to be surrounded by friends of the heart.
BarbaraA - here i thought i was the only one who scheduled "freak out" time! hahahaha....it is so odd...like giving ourselves permission to be human and frail. I was determined to go back to office this afternoon and landed up crawling in bed and napping the afternoon away. I was supposed tobe there working on my Atlanta presentation for next week but you know what? I made myself the priority- if I am rested and calm, I think better and as a result perform better.
SO i will go in office in the morning and then to oncs at 10am....I will have my big purse so you guys can hop in....:)
As for the question about the double BMX....that was left up to me...right from the start...although common wisdom put me with a lumpectomy but I know me and my weaknesses...fear of recurrence in other breast would have driven me nuts - it is one thing I have not regretted through all of this mess...for the exchange and reconstruction has given me something to enjoy and look forward to in a weird way. who knew modern medicine could literally grow new boobs? My womanhood was never tied up in them- they did their jobs- fed my babies and got my hubby interested over 30 years ago....the new ones are just fine....I can pick them apart but really, to be honest, my originals werenot so perfect...am a 36 full c now instead of a 36 long:)
I am also taking the recent doc treatment guidelines with me from NCCN so doc can have a copy the mos t recent copy from Feb 2011....when i traced my particular stats it said "AIs can be suggested to prevent minor chance of recurrence in contralateral breast...." all of the other stages said absolute AIs...oh geez I just hope it all goes well and I MUST QUIT SMOKING- this is nuts..I went backon smoking thread and said I would so I willl.....
I love you all for putting up withm y crazy ranting and I truly hope there is some way for us to have a et together...I don't know how...somewhere central and reasonably priced so all can afford...even a weekend would be wonderful....i feel like i know you all and care so much for you...even the newbies...you all add to the mix and have something to offer- remember that- we allhave something to offer. sometimes we may take more than we give but in other times we give freely- how cool is that?
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Texas annette? I will be in Tampa in early September for a conference....not really close hmm?ok my cat is saying it is time to go to bed so...night! Glad your hubby joined all of us Annette!
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yeah...but mebbe i can make it over to tampa...we shall see...not too long of a drive if I am determined:)
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Sandy, I live in Tampa. PM me and we can do lunch.
{{{ANNETTE}}}} holding your hand today!
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I had my appointment with my onc., yesterday. They have to send my cancer to Calif., to be checked and then he will know what kind of chemo I will have. He told me I will need it and radiation, just doesn't know how much yet. I did find out, my cancer was bigger than I had first thought. That scared me more! And does it sound terrible of me, that I don't want to loose my hair? There was no cancer in the two nodes they removed from me, so that was good news.
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Brenilea, sounds like he ordered an Oncotype test. If the test comes back with a low score, you may not need to do chemo. Fingers crossed for you.
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Hugging you bren- BarbaraA is most likely right- they have to send for these tests and the results help determine what treatment is called for
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brenilea - I have already said it before, but I will repeat: I am more upset about losing my hair, than I would be about losing "the girls". I know it is a vain and frivolous concern - but I spent the majority of my adult life trying to look professional and getting my hair chopped off and dyed and permed, and then I finally got the guts to walk away from the insanity and grow it to my butt the way I always wanted to. Now it is all the way to my tailbone, and red, and exactly the hair I always wanted...and now after all that time and care and waiting, I can only enjoy it until Istart chemo. I'd rather lop off both boobs, I never liked them much anyhow and now I have a really good reason to despise them! So no, it's not weird or sad that you don't want to lose your hair, I'm right there with you, Sweetie.
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YEAH!!!!! All scans clear...and I told the onc the truth about the AIs and she has agreed to run full blood panels every three months to monitor hormone levels..thank you all for being so loving and caring
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{{{{ANNETTE}}}} Doing the happy dance!!!!!
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YEAH ANNETTE DOING THE HAPPY DANCE ALONG WITH BARBARA!!!!!!!!!!!!!!!!!
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WONDERFUL news, annette! I'm so happy for you!
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Great news Annette!
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doin the dance in so. fla!!! good news, annette! 3jays 0 -
Hi, I'm stage 1 with no lymph nodes involved. Her 2 negative, hormone receptors positive. What kind of chemo did you guys have?
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Hi khollingsworth13. I am sorry I can't help since I did not have chemo. SOmeone will be along who can help.
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welcome,kollingsworth. i was stage iib,, er-; and i did 4a/c, and ?? some taxotere. no rads. it was scarey, at first, but very doeable... you'll be surprised how "normal" the abnormal can get!! 3jaysmom
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kollingsworth, similar diagnosis--see below. No chemo just radiation and tamoxifen.
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kollingsworth-no chemo here either. Good Luck and welcome, although sorry you have to join us here.
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