High Onxotype Score
Comments
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Good morning Hubby
Someone on here with more knowledge than me will come here and talk to you about that score. I have no idea about this test, or when you take it and what the score means, but I will be honest with you, I agree with your wife, it sucks for me too. All I do is cry, so I know how she's feeling. Go hold her close, she's scared and you will comfort her.
Take care, Ronda0 -
Hubby, yes it sucks but it's
Hubby, yes it sucks but it's not the end of the world. There are quite a few triple negative ladies on this site and they have completed their treatments and are moving on with their lives. I completely understand the reaction of your wife because I remember the fear after dx. Is it possible that she would consider coming to this site? She would have the support and knowledge base that would provide some answers to the unknown. Or, she may be at the stage right now that it is just sinking in and she's trying to absorb it. Let her know that the survival rate today is great, not like in the past. Also, the treatments are do-able and we can help her get through them. Encourage her and in the meantime just love her and comfort her. You are truly a good man to even be logging on yourself. Take care and good luck!!0 -
Good Morning,2Floridiansisters said:Good morning Hubby
Someone on here with more knowledge than me will come here and talk to you about that score. I have no idea about this test, or when you take it and what the score means, but I will be honest with you, I agree with your wife, it sucks for me too. All I do is cry, so I know how she's feeling. Go hold her close, she's scared and you will comfort her.
Take care, Ronda
I am triple neg and it is not the end of the world. In fact I'm glad I don't have to deal with the hormone killing drugs for 5 years with all of those side effects. I discovered my lump a year ago tomorrow so I am thru with treatment and hair growing back.
I did not take that test and I woldn't have dreamed of not doing chemo. Chemo is doable, it's crap tho. But the chemo took my % down from 30 to 40 to 18% chance of recurrence. Was I scared? Totally! It was the nitemare come true. Did I cry? You bet. But you just take one step at a time , take each day as it comes. I also took Ativan twice daily, the one in the daytime made my life more bearable and helped me focus and the one at nite helped me sleep...that is the worst time to be awake. Sometimes a third one. I didn't thnk I could ever do chemo, but you know what? I did. So will your wife but for now she is devasated and scared out of her mind. I hope she is able to hold it together a litle for the kids because they will be the most scared of all. Again, Ativan. I would have been a big lump of mess without it.
Get online and read about triple neg so you know what to ask your doctors on Wed & Thurs. I alwasys liked the Mayo Clinic sites, easy to read and very thorough. I wish I could say something to make it better but there is nothing....Yes, it s**ks big time. But she will get thru it, time will pass and then this time next year you'll be writing to someone who is just starting the journey letting them know they will get thru it.
A year later I smile, I love, I laugh but I remembr and sometimes I still cry. I am crying now thinking about your family, 2Foridiansisters and all of the newcomers here that are just beginning.
Please keep us posted what the doc's say. My prayers for strength and a good outcome are with all of you.
Hugs, Judy :-)0 -
Hubby
This does suck for everyone, but mainly for her. No ones life is ruined, this is just a bend in the road that needs to be navigated....she will get through this, you will get through this, kids will get through it.
You are where I was a few weeks ago after my wifes diagnoses. All I can say is try to stay positive, be there for her when she needs you (and the kids) and take a step away when she needs to be alone. Go to all the appts, take notes, and write down questions so you dont forget, and find someone you can vent to when you need it.
ACS has support groups all over the country, for her, you, and the kids. See if she would do that or have her log here. Great support for her in these blogs.0 -
No ideas about the score
I have no idea about the score or much about what type I have, but I've noticed you on the board answering our posts, supporting and finding out things for your wife. I think that's so sweet. For me, I'm a very shy person and don't like 'people' knowing because once I start talking, I can't stop crying. It's not that I'm embarrased but I feel like it's my problem..actually my family's problem. However, this site has helped me out a lot. It's nice to read the different posts.. some fun...some serious.. some inbetween. and someone knows or has been through it. It's a bit overwhelming but reassuring to know that people get through it. One thing my hubby does for me that helps, is just holding me, being with me, telling me that he's by my side no matter what happens and of course that he loves me.
Any kind of treatment scares me..actually this whole thing. I don't know what to expect, but one thing I really don't want to lose my hair. But my hubby told me that if I lose my hair, he'll also go bald and my 8 year old twin son said he'll do it too, because they don't care how I look, just that I get well. That's comforting to me. Good luck and hope she comes on the board.0 -
Hubby -
I'm sorry - I know this has to be particularly hard because you guys have waited so long to actually get answers. Your wife has been in limbo for quite a while and she probably needs some time to wrap her brain around this - I know I did. Initially no one mentioned the possibility of chemo for me because we thought it had been caught so early - then we found out I had two positive lymph nodes. So my first realization about chemo was when my daughter told me in the hospital that they had to remove some nodes. Even with a medical background, and knowing what this meant as far as future treatment, it took some time for it to become real.
As much as it totally s**ks for everyone, you will all come through it one step at a time, one day at a time. It doesn't seem like it at first and it is very, very scarey, but you have seen for yourself through this board it will happen. You are all in my thoughts and prayers.
Chris0 -
What is Oncotype percentage?
My doctor said the important Oncotypedx result is the percentage, not the score. What is the probability that cancer will come back within 10 years if your wife does not have chemo? For example, I had a 15% chance of recurrance without chemo. (That's not real high, but it's not nothin'. I chose to have chemo because I'm chasing down this cancer with everything I've got available.)
People think of chemo like it's the bubonic plague or something. In the old days, chemo was harsher, the side effects were more devastating, the horror of it was far, far greater than today. Granted, reactions to it vary, but, as we say here, it is doable and doesn't ruin your life. It gives you more life, a greater chance of being here for your kids for a long time.
I am so sorry for your wife's and your family's distress. Yes, it stinks, but, as you can see from all the survivors here, it's doable.0 -
Thanks for the Support
My wife goes on another websites board. I came across a post of hers, and felt like I was reading her diary, so I came to this board. I just needed to vent this morning. I've never seen her in such a rage as I saw her last night. I had to go to work today, and I can't hold her together. I haven't seen the actual report yet, but the score of 47 translates into something like a 34% recurrence rate. I think she is scared most of being triple negative, but the chemo/sickness from chemo is also weighing her down.0 -
Support
Wrapping your head around the fact that you have cancer is huge. It took me ten days to say the words out loud. I have triple negative also and am terrified by it's agressiveness. The whole family is affected when one is broken. Sometimes, we just want to be held and cry. Sounds like you are doing a great job supporting your wife. Remember to get support for yourself.0 -
we all were scaredHubby said:Thanks for the Support
My wife goes on another websites board. I came across a post of hers, and felt like I was reading her diary, so I came to this board. I just needed to vent this morning. I've never seen her in such a rage as I saw her last night. I had to go to work today, and I can't hold her together. I haven't seen the actual report yet, but the score of 47 translates into something like a 34% recurrence rate. I think she is scared most of being triple negative, but the chemo/sickness from chemo is also weighing her down.
and found out that Chemo is double.It is not going to be easy but she can do it.34% of recurrence if she will not do Chemo, so convinced her to do it. You are doing amazing job in supporting her. Believe me 1 year from today both of you will be smiling.
Good luck0 -
I guess I'm the oddball onMichPro said:Support
Wrapping your head around the fact that you have cancer is huge. It took me ten days to say the words out loud. I have triple negative also and am terrified by it's agressiveness. The whole family is affected when one is broken. Sometimes, we just want to be held and cry. Sounds like you are doing a great job supporting your wife. Remember to get support for yourself.
I guess I'm the oddball on the board think I'll change my name to Oddball. I don't remember crying I just got pi$$ed off. I thought "how dare this thing invade my body, no way in he!! will it EVER win." My doc never gave me an option she told me I had to go thru chemo or I wouldn't be here. I was also triple negative. I remember asking her what I had to do to get rid of this damn thing. I saw it as an enemy, and it had to die.
I was suppose to go thru 6 months of chemo to "shrink" the tumor. I did 4 months went for a pet scan and no trace of cancer. That's right it was gone. I was suppose to have a mastectomy, when I woke up I still had my breasts. I had a lumpectomy. Doc said when he was looking around at my tissue it was all new clean tissue. Pathology report read 1 dead cancer cell all tissue was new.
It won't be easy, but you have to fight. You will get thru this, believe in yourself pull that deep inner strenght out. Take care, keep us updated.
Jennifer0 -
Hi Hubby.ms.sunshine said:I guess I'm the oddball on
I guess I'm the oddball on the board think I'll change my name to Oddball. I don't remember crying I just got pi$$ed off. I thought "how dare this thing invade my body, no way in he!! will it EVER win." My doc never gave me an option she told me I had to go thru chemo or I wouldn't be here. I was also triple negative. I remember asking her what I had to do to get rid of this damn thing. I saw it as an enemy, and it had to die.
I was suppose to go thru 6 months of chemo to "shrink" the tumor. I did 4 months went for a pet scan and no trace of cancer. That's right it was gone. I was suppose to have a mastectomy, when I woke up I still had my breasts. I had a lumpectomy. Doc said when he was looking around at my tissue it was all new clean tissue. Pathology report read 1 dead cancer cell all tissue was new.
It won't be easy, but you have to fight. You will get thru this, believe in yourself pull that deep inner strenght out. Take care, keep us updated.
Jennifer
I think your wife is grieving and needs to go through the stages. Right now she sounds angry and I don't blame her. As hard as it is for you, let her express her feelings without trying to fix things. They will work out as she goes through the process. Chemo is the only available treatment (currently) for triple negative BC so I strongly encourage her to consider having it. Chemo treatments have come a long way since then. On breastcancer.org there is a specific topic and threads for triple negative survivors. You may get some specific information there as well. Hugs to you and your family.
Roseann0 -
Anger
She is angry, with a lot of her anger directed at the inconsistency of the test results. The question is going to be which chemo ACT or CMF. Over the phone with me, he sort of said he could be persuaded into CMF, because of some studies that have come out that triple negative responds well to it. Then this morning on the phone with my wife, he was saying that he thought the ACT was probably better. She needs a few days to come to grips with the whole idea that she needs chemo. It's getting to be too long of a time from surgery to treatment.0 -
At this point all I can say is: SECOND OPINION!Hubby said:Anger
She is angry, with a lot of her anger directed at the inconsistency of the test results. The question is going to be which chemo ACT or CMF. Over the phone with me, he sort of said he could be persuaded into CMF, because of some studies that have come out that triple negative responds well to it. Then this morning on the phone with my wife, he was saying that he thought the ACT was probably better. She needs a few days to come to grips with the whole idea that she needs chemo. It's getting to be too long of a time from surgery to treatment.
From what you have been saying this doctor changes his mind, his story, his advice depending on who he is talking to. I would have lost total confidence in his judgemnt and opinion and would seek a second opinion. How can you trust anything he is saying? I had triple neg and received Cytoxin/Taxotere, ACT is another very common chemo cocktail and your cocktail is supposed to be designed to work best with your type of cancer, your health etc. It should not be up to us to make tht decision, I looked to my onc to use the best thing for me....when I go to my Internist with an illness, he doesn't name several antibiotics and tell me to choose which one...that is ridculous. Consider getting a second opinion so you can feel comfortable with your wife's treatment. This is so stressful and scary to begin with and your onc is making it even more so.
Good luck and keep us posted.
Hugs, Judy :-)0 -
I've come to the conclusionSkeezie said:At this point all I can say is: SECOND OPINION!
From what you have been saying this doctor changes his mind, his story, his advice depending on who he is talking to. I would have lost total confidence in his judgemnt and opinion and would seek a second opinion. How can you trust anything he is saying? I had triple neg and received Cytoxin/Taxotere, ACT is another very common chemo cocktail and your cocktail is supposed to be designed to work best with your type of cancer, your health etc. It should not be up to us to make tht decision, I looked to my onc to use the best thing for me....when I go to my Internist with an illness, he doesn't name several antibiotics and tell me to choose which one...that is ridculous. Consider getting a second opinion so you can feel comfortable with your wife's treatment. This is so stressful and scary to begin with and your onc is making it even more so.
Good luck and keep us posted.
Hugs, Judy :-)
I've come to the conclusion that I'm not sure the oncotype dx test results mean much. My score was 18 with a reoccurrence rate of 12% over 10 years. My onc even told me I wouldn't have to do chemo as it would only benefit me another 3% so I was content to have a masectomy and radiation. However after the pathology report came back things have changed. I had 11 positive lymph nodes removed and invasive bc in my chest wall, went from stage 2A to Stage 3A, and now my onc is saying I'm considered high risk for reoccurrence. I'm in the middle of chemo treatments, having some problems but feel like I need to do everything possible to kick this beast out of my system. I wanted to have chemo even when my onc said I wouldn't need it. I'm so sorry your wife is having such a hard time and hope that soon she can understand more about the treatments and use some of that rage in fighting against her cancer, get mad at the beast and determine not to allow bc to win. My husband is so supportive and is there for me in everything, and you are there for your wife. Just keep being reassuring, loving and supportive, letting her know you're there for her. Wishing the best for both of you and your family.0 -
The Oncotype test is for hormone related bc andSunrae said:I've come to the conclusion
I've come to the conclusion that I'm not sure the oncotype dx test results mean much. My score was 18 with a reoccurrence rate of 12% over 10 years. My onc even told me I wouldn't have to do chemo as it would only benefit me another 3% so I was content to have a masectomy and radiation. However after the pathology report came back things have changed. I had 11 positive lymph nodes removed and invasive bc in my chest wall, went from stage 2A to Stage 3A, and now my onc is saying I'm considered high risk for reoccurrence. I'm in the middle of chemo treatments, having some problems but feel like I need to do everything possible to kick this beast out of my system. I wanted to have chemo even when my onc said I wouldn't need it. I'm so sorry your wife is having such a hard time and hope that soon she can understand more about the treatments and use some of that rage in fighting against her cancer, get mad at the beast and determine not to allow bc to win. My husband is so supportive and is there for me in everything, and you are there for your wife. Just keep being reassuring, loving and supportive, letting her know you're there for her. Wishing the best for both of you and your family.
not for triple neg bc. In all of my reading, and per my surgeon and onc. it was not for me with triple neg. I would be very frantic by now if I were in you and your wife's shoes. You guys need a positive dx and treatment plan.
Hugs, Judy :-)0 -
WeekendSkeezie said:At this point all I can say is: SECOND OPINION!
From what you have been saying this doctor changes his mind, his story, his advice depending on who he is talking to. I would have lost total confidence in his judgemnt and opinion and would seek a second opinion. How can you trust anything he is saying? I had triple neg and received Cytoxin/Taxotere, ACT is another very common chemo cocktail and your cocktail is supposed to be designed to work best with your type of cancer, your health etc. It should not be up to us to make tht decision, I looked to my onc to use the best thing for me....when I go to my Internist with an illness, he doesn't name several antibiotics and tell me to choose which one...that is ridculous. Consider getting a second opinion so you can feel comfortable with your wife's treatment. This is so stressful and scary to begin with and your onc is making it even more so.
Good luck and keep us posted.
Hugs, Judy :-)
My wife is starting to wrap her head around the whole chemo thing. She's kind of numb. We have appointments set up Wednesday and Thursday for 1st and 2nd opinions. We have lots of questions to ask. CMF vs. ACT or CT; the "C" is the same, but the "A" is the one that may damage your heart, and causes the hair loss. The problem with looking at statistics, is that they are not broken down enough.
From what we've read, most BRCA+ women are triple negative; does that skew the reccurence and survival rates among triple negative women? Are these women healthy eaters, do they drink or smoke? How many women are these statistics based on, and if we are talking about ten year rates, then they are cases that are least ten years old? I just don't know how reliable all of these statistics are.
Oncologists are very statistic driven, but in the end, there are options, and my wife will make the choice she is most comfortable with.0 -
Just FYI, Hubby, I had theHubby said:Weekend
My wife is starting to wrap her head around the whole chemo thing. She's kind of numb. We have appointments set up Wednesday and Thursday for 1st and 2nd opinions. We have lots of questions to ask. CMF vs. ACT or CT; the "C" is the same, but the "A" is the one that may damage your heart, and causes the hair loss. The problem with looking at statistics, is that they are not broken down enough.
From what we've read, most BRCA+ women are triple negative; does that skew the reccurence and survival rates among triple negative women? Are these women healthy eaters, do they drink or smoke? How many women are these statistics based on, and if we are talking about ten year rates, then they are cases that are least ten years old? I just don't know how reliable all of these statistics are.
Oncologists are very statistic driven, but in the end, there are options, and my wife will make the choice she is most comfortable with.
Just FYI, Hubby, I had the T/C (taxotere/cytoxan) and lost all of my hair, everywhere. Hair loss is a side effect of most of the chemo drugs. I know it's very traumatic, but the good thing is that it is temporary. Good luck with your doctor visits and let us know what you both decide. Take care.0
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