CALLING ALL STAGE I SISTERS
Comments
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Try cancermath.com ( or is it.org )
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Scotttie - Cancers differ, I know, but I had a score of 18 and the same recurrence chance and my doctor said the risk to benefit ratio wasn't worth it. I'd get a second opinion to be sure. Just my humble opinion. The second Dr. may concur, but you'd at least have the peace of mind of knowing that you check all your options out. When I looked it up, I found that 18 was considered both low and intermediate. Why it isn't1-17 is low or 18-to 30 is intermediate, I don't know, but low is 1-18 with little if any benefit, and intermediate is 18-30 and is "unclear whether there is a benefit from chemo. I know they look at multiple factors and that size and grade do not determine chemos necessity; the 21 genes they look at do.
Purple - I am very careful with what I do and how I do it. There is new research showing that a certain amount of exercise is good for LE. I just can't do the big weights anymore. I was told a massage was ok if it wasn't deep tissue and they used upward motions on the arm. I plan on having her just skip my right arm to be on the safe side. They recommended going to someone with experience with LE patients. Definately fly with your sleeve; even short trips.
If I have any more surgeries I'm writing right on the papers you have to sign that my right arm not be used for anything and having a witness to that fact. I'm also writing on my arm and taking a picture of it and letting the surgical team know that I have done that. I've told all my family to make sure if I'm ever unconcious to make sure they don't use that arm. I wish there some sort of international tattoo you could have that any medical professional would recognize. I can't believe in this day and age with malpractice so crazy that anyone would go against the patients wishes. What an arrogant, ignorant, Dr. He is a malpractice claim waiting to happen.
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Peninsula Medical, who sends a free hot pink bracelet if you ask, sells a pink stretchy sleeve that goes from wrist to above the elbow, and says do not use this arm. I don't know if it would be a good idea if you already have LE or if it comes in sizes. They just had a brochure for it with my free wristband. I do think specifying not to use that arm on the consent is a good idea.
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"I was told a massage was ok if it wasn't deep tissue and they used upward motions on the arm. I plan on having her just skip my right arm to be on the safe side. They recommended going to someone with experience with LE patients. "
MiniI'd be careful of the ENTIRE quadrant - not just the arm. I know, I miss my massage too!
Yes, I wish I could find someone with LE experinece . That person , I would probaby trust.
Thanks for adding to some valuable info.
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I have 12 nodes out of my right arm and 4 taken from my left. So I have bp and ns out of left. Really hate not having a good option. BP out of my leg was not accurate enough and dr just started taking it from my left arm.
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Mini1......I am very comfortable with my decision. I had a lumpectomy, radiation and now on Letrozole for 5 years. If I have a recurrence, that will be the time to consider a mx.
I know some women go through a lot of anxiety deciding what course of treatment to have, luckily I am not one. Thank you for your input and humble opinion.0 -
my mammoprint score came back with a 27% chance of coming back without chemo.....5 to 7% chance with chemo....so i opted for the AC chemo that was recommended
I was diagnosed two days after my 67th birthday
My dr used the mammoprint versus the oncontype score...mamoprint uses 70 genes versus the onconotype 21 gene
i am doing okey dokey....my hair is finally coming back....some residual stuff from the chemo is going on
i do not quite understand and will have to read more from people on the LE as i had 3 nodes removed and were zero.. the place i have to go to get blood taken will not use that arm.
my left arm is for crap for blood....i had a port in my arm and to this day...after it was removed in june .....my arm is bigger than my left....the hospital i went to uses a port in the arm instead of the chest (akron general medical center) the other hospital (Summa) uses the port in the chest. I sure wish I still had the port in arm for the ease of blood tests but chemo dr wanted it out. I reckon i will talk to someone about my left arm where the port was about being big
good luck to you and this is a process to go through for sure...but, i felt I made the right decision with the chemo after the mammoprint results
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after it was removed in june .....my arm is bigger than my left....
Hi munnySounds like you may want to have a visit on the lymphedema forum. They are wonderful and imnformative ladies.
Best Wishes to you!
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Scottie - I wasn't advocating more treatment. Quite the opposite. I just meant that some docs recommend chemo as a matter of course, whether it has been shown to help or not. That close of a number would make me want a 2nd opinion before I had chemo is all; I wasn't suggesting you have it. I'm glad you've made your decisions and are comfortable with them. I vascilate with mine depending on the day. :-)
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Mini1......some MO's advocate chemo if the woman is young, perhaps being 65 helped his and my decision. As I say, I can still have chemo and/or mx should I have a recurrence, which I'm praying won't happen.
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Hi, I got sent to a lymphadema specialist who also happened to be a physical therapist. She has me doing lots of stretching of the arm on my affected side (I had a lumpectomy and radiation) because she said she's seen swelling and tissue tightening as far out as 2 yrs post radiation. The "pet the kitty" gentle self massage of sore breast tissue I do is to move lymph out of my breast., and it's working. My personal opinion is that everyone should get to such a specialist as a matter of course, before and after radiation.
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Scottie - That's the position I am in. I'm in my mid-fifties. I also opted for the lumpectomy and rads. My mom was in her early 60's and had just an mx, no meds due to unrelated health issues, and she never had a recurrence. I still say it's just a big 'ol crap shoot. Each has it's own pros and cons and at the 10-year mark no difference in survival rates for early stage. Like I said, I'm not advocating either one. It's too personal of a decision. So it's one now and hopefully no other in the future. My wish for us all. Either way, we all make decisions no one should have to.
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Scottie1, My OncoDx score was 18/12%, and the doc said chemo would give and additonal 2-3% benefit against recurrence. That was not enough for me to go thru' the S/E's of chemo, so I chose not to. My tumor was <1cm. Another factor that guided me to do anti-hormonals without chemo was that I was 90% ER+ & 85% PR+, so I figured that was the way to go.
Mini1, As far as one arm being bigger than another, we ALL have slight variations, usually with our dominant arm being slightly bigger, but sometimes the reverse. If you go to a Lymphedema therapist, they will take baseline measurements, not to compare one arm to the other, but to compare the arm to itself over time to see if there is enlargement (poividing you don't have an overall weight gain.) You could take your own baseline measurement at home, if you aren't working with a therapist.
purple32, I'm sorry my comment rubbed you the wrong way. I am not even quite sure why, since I wrote that I was not making a judgement statement, but you seem to be insisting that I am. If you re-read my comment, I did not compare LE to any cancer stage, not did I imply a contest. ?? If you want to explain exactly what you mean in a PM, I might better understand. As it is, I really do not understand.
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Elimar and Mini1......forgot to mention that I also was 90% ER pos and 50% PR pos
so another reason for my decision.0 -
Hi Sisters...I was busy with life and went MIA for a while.......
Welcome to all new sisters
Thank You to those who were asking for me......
.About LE I can direct you LE Thread to get more info.....I didn't have it so I'm clueless......
Everybody's decision is their own please let's not make this sisterly thread a Feud Thread.....
We are entitled to our own opinions and Treatments......we are not doctors.......
One DR might think to use the BC arm for blood draw etc while the other one completely disagree....Do what makes you feel comfortable
Myself I don't let anybody to use my BC arm........
Elimar....I'm right here my friend
Hugs to all...soon we'll be celebrating this threads 3rd anniversary
Sheila♥
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My onco score was a 23 with 14% recurrance. I got two opinions and both said chemo would only bring it down 2-3%. My MO said anything under 5% he would feel very comfortable with forgoing chemo. So I skipped chemo. He was following a study on Zometa and I am now on that which studies show a much higher reduction in recurrance for early stagers with no chemo. Also my ER is positive but not very highly positive.
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Elimar - I didn't diagnose myself, an Occupational Therapist specializing in LE did. I guess I didn't word what I said well enough. It's not just that my dominant arm is bigger, it was that the amount of swelling was 1 centimeter. But as I said, I don't stress about it. I'm careful, but not obsessive. :-)
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Mini1, oh! I see. Glad you have an OT who knows her LE checking you out too. One centimeter could almost go unnoticed by someone not looking for it, but if it IS noticed, then all the better to "nip it in the bud." It is so much better when the docs and therapists are proactive about it.
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♥Granny♥0
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I am not even quite sure why, since I wrote that I was not making a judgement statement, but you seem to be insisting that I am.
elimar
Writing that you are not making a judgment is not the same as coming across as though you are , or as actually making one for that matter.
I am not in any way INSISTING which is why I just prefer to drop the matter than belabor it.
Peace0 -
Well, purple32, since you did not take my request to explain yourself in a PM, I'll just let you have the last word on your misunderstanding. How 'bout that?
Yeah, "Peace" back at ya.
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Writing "Peace" is not the same as being peaceful. Aha-ha-ha!0
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No elimar...I was not writing peace to express my being peaceful. I was extending an offer.
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Dear Sisters, can anyone tell me why my doctors convinced me I did not need to get the OncotypeDX and Mammoprint test? Was it because I got a BMX?
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I didn't have the Oncotype either. Mine was early stage and I'm 71, so perhaps my age entered into it. I think it also takes a fair amount of tumor to do the test.
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Just poppin in to say hi.
Was away for a while.
Still prayin for each and every one of ya.....
Ill be back!!!!Grannydukes
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What does your t-shirt say, grannydukes?
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Fearless it could be that your tumor was too small for the test and also if your KI67 was low along with your tumor being small could be why your Dr did not order the test knowing that they would not offer you the chemo anyway.
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Stage 1 Grade 1 tumor small?
Mine said no oncoscore and I had LX0 -
Fearless - I don't know why. My doc did mine automatically. The only one they gave me a choice with was the one for the brac gene.
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