oncotype DX score
Comments
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I am awaiting that test as I
I am awaiting that test as I write this. Stage 2a, invasive papillary carcinoma, 3cm tumor, er+ PR+ Her2/neu negative 1+ ... mostly favorable except my Ki67 is at 30%. The Oncotype is pretty much the same as the Ki67 so the doc was saying chemo is the way she recommends. She asked me if I scored in the middle (which she believes will be the case) then chemo is right for me. It would be 4 times every three weeks using cytoxan and docetaxal. For me, the test is my only hope that I can bypass chemo altogether. We both know this won't be the case, but I have a few weeks before I make my decision. My answer will be...YES...the proliferation rate is scary. I know if I have a recurrence it will be a blockbuster event. Chemo with hormone therapy and radiation is my best road to take.
SO if it was me, I would say yes. All doctors don't like when the score is in the middle. But you would need the chemo if the score was at 30. I don't know. I wouldn't take any chances. You say you have little ones. Somehow you gotta keep them in focus. If this is going to keep you cancer free, maybe you should dive in and get it all done this time.
Good Luck ... I would love to hear what you decided. I am on my way down that same road.
xoxoxo
Your pink sister,
Mary0 -
the road to chemoMsGebby said:I am awaiting that test as I
I am awaiting that test as I write this. Stage 2a, invasive papillary carcinoma, 3cm tumor, er+ PR+ Her2/neu negative 1+ ... mostly favorable except my Ki67 is at 30%. The Oncotype is pretty much the same as the Ki67 so the doc was saying chemo is the way she recommends. She asked me if I scored in the middle (which she believes will be the case) then chemo is right for me. It would be 4 times every three weeks using cytoxan and docetaxal. For me, the test is my only hope that I can bypass chemo altogether. We both know this won't be the case, but I have a few weeks before I make my decision. My answer will be...YES...the proliferation rate is scary. I know if I have a recurrence it will be a blockbuster event. Chemo with hormone therapy and radiation is my best road to take.
SO if it was me, I would say yes. All doctors don't like when the score is in the middle. But you would need the chemo if the score was at 30. I don't know. I wouldn't take any chances. You say you have little ones. Somehow you gotta keep them in focus. If this is going to keep you cancer free, maybe you should dive in and get it all done this time.
Good Luck ... I would love to hear what you decided. I am on my way down that same road.
xoxoxo
Your pink sister,
Mary
Hi Mary, SO good to hear from anyone who is going through anything similar in the least. I am not hooked up with a support group and am thinking I could benefit from others who "speak the same language." Your diagnosis seems to be more aggressive. Although I don't know what the K167 is. Would that be on my path. report? What does it mean? I'll try to find it online. Mary, my big "scaries" are: 1. if I don't do it and a recurrence happens, I'll never forgive myself. I think there would be more peace in knowing that although there truly are no guarantees when it comes to recurrence, at least know I did all I could. On the other hand, 2.My onc. trys to offer some solace in the fact that the actual chemo only lasts 12 weeks (4 cycles Taxotere & Cytoxan). YEAH BUT the hair loss lasts a year til I get enough to be normal! So they send me on my way from chemo to radiation, then back out into the noncancer world to try to be normal, but with no hair! I need courage. I wish the Onco score was something definite. I wish you a low one Mary. I will write back to let you know what I've decided. Please let me know how it turns out for you.0 -
Hair...madsters1 said:the road to chemo
Hi Mary, SO good to hear from anyone who is going through anything similar in the least. I am not hooked up with a support group and am thinking I could benefit from others who "speak the same language." Your diagnosis seems to be more aggressive. Although I don't know what the K167 is. Would that be on my path. report? What does it mean? I'll try to find it online. Mary, my big "scaries" are: 1. if I don't do it and a recurrence happens, I'll never forgive myself. I think there would be more peace in knowing that although there truly are no guarantees when it comes to recurrence, at least know I did all I could. On the other hand, 2.My onc. trys to offer some solace in the fact that the actual chemo only lasts 12 weeks (4 cycles Taxotere & Cytoxan). YEAH BUT the hair loss lasts a year til I get enough to be normal! So they send me on my way from chemo to radiation, then back out into the noncancer world to try to be normal, but with no hair! I need courage. I wish the Onco score was something definite. I wish you a low one Mary. I will write back to let you know what I've decided. Please let me know how it turns out for you.
It grows back...DON'T base your decision on losing your hair....I knew a woman w/ bc who refused chemo...didn't want to lose her hair...she died 11 months ago....none of want to lose our hair but it's a small price to pay in trying to save our lives....and chemo is so doable today compared to years ago....I had the same chemo cocktail, and radiation....I never had the first wave of nausea...anti nausea frauds are wonderful today....not to say I sailed through, no one does, but for me wasn't horrible....hardest part was walking in the door to the chemo room, for the first time....I finished chemo in the month of August in 09....went wig free in Jan.10...short but cute!
So, please put the hair issue aside...please keep us posted...we truly do care.
Hugs, Nancy0 -
Oh dear ... If mine comesmadsters1 said:the road to chemo
Hi Mary, SO good to hear from anyone who is going through anything similar in the least. I am not hooked up with a support group and am thinking I could benefit from others who "speak the same language." Your diagnosis seems to be more aggressive. Although I don't know what the K167 is. Would that be on my path. report? What does it mean? I'll try to find it online. Mary, my big "scaries" are: 1. if I don't do it and a recurrence happens, I'll never forgive myself. I think there would be more peace in knowing that although there truly are no guarantees when it comes to recurrence, at least know I did all I could. On the other hand, 2.My onc. trys to offer some solace in the fact that the actual chemo only lasts 12 weeks (4 cycles Taxotere & Cytoxan). YEAH BUT the hair loss lasts a year til I get enough to be normal! So they send me on my way from chemo to radiation, then back out into the noncancer world to try to be normal, but with no hair! I need courage. I wish the Onco score was something definite. I wish you a low one Mary. I will write back to let you know what I've decided. Please let me know how it turns out for you.
Oh dear ... If mine comes back in the 20s, I am going for it. I know how you feel about the hair loss, but look at the alternative. A recurrence could prove fatal. NOT that I believe it will be with you or me. BUT if there is a chance for cancer to come back, it most likely will be worse than the first go round. Cancer wants to kill you/me. It doesn't care who you are. You have two young ones. I know that is part of the equation. You probably feel you can't do it. That must be such a tough road to go down. Mine are in their 20s now. The day I got the news, I came home and couldn't speak. My eldest daughter took the films from my hands and saw the tumor. We cried and hugged. Then I said "I'm sorry". She couldn't believe that I would say that. I was saying it because all I could think of was that I set her and my other daughter up for cancer. It was the most heart wrenching moment of my life! Sorry ... got off track here.
Did the Oncotype test show you a graph that says how much more chemo will lower your rate of recurrence? I haven't seen mine yet. So I don't know. I've been told that my rate without treatment is 36% and with ALL treatment it is 18%. I still think the lower number is too high but it is what it is.
I've decided on chemo because I already know my best chance for non recurrence is with it. Besides, I am going to ROCK bald! BTW, I am 56 and got the news one week after celebrating my birthday
Not a year I will want to remember yet it will be embedded in my brain for the rest of my life.
Keep in touch. Cancer survivors are courageous. And that's how I see you.
much love,
Mary0 -
Just some reassurance about the cocktailMsGebby said:Oh dear ... If mine comes
Oh dear ... If mine comes back in the 20s, I am going for it. I know how you feel about the hair loss, but look at the alternative. A recurrence could prove fatal. NOT that I believe it will be with you or me. BUT if there is a chance for cancer to come back, it most likely will be worse than the first go round. Cancer wants to kill you/me. It doesn't care who you are. You have two young ones. I know that is part of the equation. You probably feel you can't do it. That must be such a tough road to go down. Mine are in their 20s now. The day I got the news, I came home and couldn't speak. My eldest daughter took the films from my hands and saw the tumor. We cried and hugged. Then I said "I'm sorry". She couldn't believe that I would say that. I was saying it because all I could think of was that I set her and my other daughter up for cancer. It was the most heart wrenching moment of my life! Sorry ... got off track here.
Did the Oncotype test show you a graph that says how much more chemo will lower your rate of recurrence? I haven't seen mine yet. So I don't know. I've been told that my rate without treatment is 36% and with ALL treatment it is 18%. I still think the lower number is too high but it is what it is.
I've decided on chemo because I already know my best chance for non recurrence is with it. Besides, I am going to ROCK bald! BTW, I am 56 and got the news one week after celebrating my birthday Not a year I will want to remember yet it will be embedded in my brain for the rest of my life.
Keep in touch. Cancer survivors are courageous. And that's how I see you.
much love,
Mary
It's not that bad. I also had 4 infusions of taxotere and cytoxin. No, I don't want to do it again, but it really wasn't that bad - and I had just about every side effect they DIDN'T tell me about. Whatever you decide, we'll support that decision. I was also Stage 1, Gr. 2, but my oncotype score was 31, so chemo was recommended. In fact, med onc said "I'm sorry, but you'll need chemo". Hardly a recommendation! No one ever talked about the fact that I was grade 2 and whether I should consider that, but I took that into consideration before I got my onco results anyway. In my little pea brain, since it wasn't grade 1, it needed to be paid more attention to and unless my oncotype score had been under 13, I was going to do chemo. I did. It's over and I feel fabulous again.
We're here for you whatever choice you make.
Suzanne0 -
Chemo May Not Be as Bad as You Fear
You are in a tough place. I had Oncotype DX about seven years ago, when it was still new. While I was waiting for the results, I hoped I didn't get a "middle" number -- a result at either end of the scale would be an easy decision, but how to balance the pros and cons if the answer was not too clear? As it turned out, my score was a 3, and the decision was easy.
But for me, that's not the end of the story. Six years later I had a new tumor -- actually, 13 new tumors -- not a recurrence, a different profile; Oncotype DX was right about the recurrence. This time, there was no debate. Mastectomy, chemo, and radiation. As it turned out, chemo was not that bad. I tolerated four infusions of A/C and twelve of Taxol with only minor problems. And I count losing my hair as a very minor problem.
If my Onco score had been 23, I would have been in exactly the same dilemma as you. In retrospect, I would probably advise my seven-years-younger self with a middle score to go for it, but I would want to know the projected benefit. If chemo can take your predicted recurrence rate from 23% to 12%, I would definitely do it. 23% to 20%, maybe not.
This is very difficult, and only you can make the decision. But, as someone else said, don't let your hair be the deciding factor. It grows back.
Good luck. My best wishes are with you. Mary0 -
My medical oncologist mademollieb said:Chemo May Not Be as Bad as You Fear
You are in a tough place. I had Oncotype DX about seven years ago, when it was still new. While I was waiting for the results, I hoped I didn't get a "middle" number -- a result at either end of the scale would be an easy decision, but how to balance the pros and cons if the answer was not too clear? As it turned out, my score was a 3, and the decision was easy.
But for me, that's not the end of the story. Six years later I had a new tumor -- actually, 13 new tumors -- not a recurrence, a different profile; Oncotype DX was right about the recurrence. This time, there was no debate. Mastectomy, chemo, and radiation. As it turned out, chemo was not that bad. I tolerated four infusions of A/C and twelve of Taxol with only minor problems. And I count losing my hair as a very minor problem.
If my Onco score had been 23, I would have been in exactly the same dilemma as you. In retrospect, I would probably advise my seven-years-younger self with a middle score to go for it, but I would want to know the projected benefit. If chemo can take your predicted recurrence rate from 23% to 12%, I would definitely do it. 23% to 20%, maybe not.
This is very difficult, and only you can make the decision. But, as someone else said, don't let your hair be the deciding factor. It grows back.
Good luck. My best wishes are with you. Mary
My medical oncologist made it very easy..anyone in her care who has an OncoDX score of 18 or above gets chemo. I came in at 22. I realize legally, it was my decision, but it felt easier to have her put it to me that way. I hope all goes well for you and I must agree that chemo is not fun but doable. Warmest thoughts.0 -
Chemo or NotGMcD said:My medical oncologist made
My medical oncologist made it very easy..anyone in her care who has an OncoDX score of 18 or above gets chemo. I came in at 22. I realize legally, it was my decision, but it felt easier to have her put it to me that way. I hope all goes well for you and I must agree that chemo is not fun but doable. Warmest thoughts.
I know the decision to have chemo is a very big one. When I was first dx in 2009 with invasive ductal carcinoma (in the right breast) the thought of chemo terrified me. Had the onocotype DX test and it came back with a 9 score. So I just had radiation (35 rounds). During my first yearly mammogram of the breast that did not have cancer, a lump was found in the left breast. After much thought and prayer, I decided to have a bilateral mascetomy. When the path reports came back it was an entirely different type of cancer. So it was not considered a recurrence.
I had moved and had a new team of doctors. The new radiologist reviewed the earlier mammograms from 2009 and did not see anything in the left breast. They think the cancer could have been there all along and not seen on the mammogram. So in 2009 there was no reason to do an ultrasound. The right breast cancer was ER+ and the left breast cancer was ER-.
Comments on the Chemo. If all your tests give you a higher survival rate then I would go for it. Chemo for me was the hardest thing that I have ever had to do. I had talked to several people that told me they worked and did the things they normally do. I know all our bodies react differently. I was so sick. I barely got out of bed for six weeks.
After the second treatment, my onocologist gave me the option to stop the treatments. I decided that I would continue. I finished on June 1. I am getting my strenght and energy back.
I'm not trying to scare you, just trying to be honest.
On the hair lose. It was not as hard as I thought it would be to lose my hair. It is coming back now with a different texture (but same color). I found it hard to lose my eyebrows because I could not cover them. Finally by the time my eyebrows started growing back in I had gotten pretty good with the eyebrow powder and pencil.
I'll be praying for you. I know you will make the right decision for you.
Peggy0 -
I had the same cocktail
I didn't have an Oncotype test because I am triple negative...so eventhough I am only Stage 1, Grade 3 with 0 lymph nodes, having chemo reduced my chances of recurrance from about 25 to 13%. I had 6 rounds of Cytoxan and 4 of Taxotere & the last 2 of Taxol (to prevent feet from swelling as they were starting to do). I was never nauseaus--the meds are great and although I had a varity of side effects, I would do it all again if I had to. Losing my hair was not good (especially the nose hair--my nose ran the entire time), but my skin looked great and not having mustache/chin hair or shaving was also nice. I shaved my head on 10/1/10 and went "topless" about 4/1/11. I now have a full head of curly salt/pepper hair (been 40 years since I saw the color).
I also had 33 rad treatments finishing 4/1/11.
Good luck with your decision whatever you choose. I just wanted to chime in and let you know that chemo is not fun, but it is "doable".
JoAnn0 -
Amazing!pzelonka said:Chemo or Not
I know the decision to have chemo is a very big one. When I was first dx in 2009 with invasive ductal carcinoma (in the right breast) the thought of chemo terrified me. Had the onocotype DX test and it came back with a 9 score. So I just had radiation (35 rounds). During my first yearly mammogram of the breast that did not have cancer, a lump was found in the left breast. After much thought and prayer, I decided to have a bilateral mascetomy. When the path reports came back it was an entirely different type of cancer. So it was not considered a recurrence.
I had moved and had a new team of doctors. The new radiologist reviewed the earlier mammograms from 2009 and did not see anything in the left breast. They think the cancer could have been there all along and not seen on the mammogram. So in 2009 there was no reason to do an ultrasound. The right breast cancer was ER+ and the left breast cancer was ER-.
Comments on the Chemo. If all your tests give you a higher survival rate then I would go for it. Chemo for me was the hardest thing that I have ever had to do. I had talked to several people that told me they worked and did the things they normally do. I know all our bodies react differently. I was so sick. I barely got out of bed for six weeks.
After the second treatment, my onocologist gave me the option to stop the treatments. I decided that I would continue. I finished on June 1. I am getting my strenght and energy back.
I'm not trying to scare you, just trying to be honest.
On the hair lose. It was not as hard as I thought it would be to lose my hair. It is coming back now with a different texture (but same color). I found it hard to lose my eyebrows because I could not cover them. Finally by the time my eyebrows started growing back in I had gotten pretty good with the eyebrow powder and pencil.
I'll be praying for you. I know you will make the right decision for you.
Peggy
Peggy, it's amazing how similar our stories are: low Oncotype DX score, then occurrence (not recurrence) of a different tumor with a different profile, that was NOT visible on a mammogram! There are some differences -- my second cancer was in the same breast, and both my tumors were ER and PR positive.0
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