OncotypeDX
This whole waiting has been pushing me almost to the edge... my stomach is in knots, I feel sick to my stomach almost constantly..... I am smoking twice as much as I was before my dx...
I really want to quit... I have ca**er.. let's smoke.. how stupid am I...
I feel so lonely... I'm here at the lake surrounded by my family, (sister, nephews, nieces...etc).. but I feel so alone... even here... I feel somewhat out of place for some reason... what category do I fit in??? I read all the posts... and I want to be supportive I really do... but I am finding it very HARD to offer any words of comfort, reassurance, and support... everytime I see a newbie tears fill my eyes...
No, I am not depressed.. I just wish I had something to offer right now, but I really don't feel I have anything to offer anyone right now... has anyone ever felt that way...
Okay.. enough.. the real reason for this post was to ask my fellow survivors how many of you have had the Oncotype dx test, if you had it, what were your scores, and what treatment did you end up having... are you comfortable with the treatment plan that you have???
If you would be willing to share I would really appreciate it!
I love you guys... I really do!!
Hugs,
~T
Comments
-
First
Hugs for you T! (((((((hugs)))))) There, did that help? And now I am jealous. We aren't going down to the lake until tonight or very early tomorrow!
And also, QUIT SMOKING! I know it is hard to do, but, you can do it. ( ex smoker myself )
My score was really low. There was no reason, according to my oncologist and my radiation oncologist, to even consider chemo. I asked them what they would do, and, they both said, no chemo as it made no sense to take it. I wasn't on the "fence", as I think your doctor said. Personally, if I would have been on the "fence", I would have taken the chemo. I would have not been happy about it, but, I would rather do what I could to fight bc then to possibly have it come back later and then wonder if the chemo would have killed it earlier. But, that is me. I did have the lumpectomy and 37 rad treatments. This was also my second time with bc. It was a new cancer, not a recurrence. I wrote more about it on my About Me page.
I don't know if what I wrote helps you or not. It is just my opinion Taleena. I hate that you are so anxious, especially, when you should be having fun there at the lake. Hopefully, you will push bc aside for awhile and just enjoy yourself with your family and friends. You deserve it!
Love, Jeanne0 -
Sorry you couldn't get yourdmc_emmy said:T-no I didn't have this test...
so I cannot help you in this regard. I'm sure someone had this done and you will get your answers soon. Hang in there, we are there for you--always.
dmc
Sorry you couldn't get your results today, but, soon! And, I pray that they are the results you want. Like dmc said, just hang in there. Try to have some fun and relax.
Hugs, Noel0 -
I was a 31
My score was 31, so chemo was highly recommended and I did it. I'm glad I did. I feel like at this point in time, my doctors and I have done everything humanly possible to avoid a recurrance and that's all we can do. I'm feeling fine, hair is growing back curly which everyone says they like and I'm working my tail off in my garden.
Good luck to you.0 -
I don't think I had this.
I don't think I had this. What is it?
Kim0 -
Just
reading your post has helped me taleena! My journey is just starting, and as ashamed as I am to admit I smoke too. So I related to all you said. I did quit in 2006, made it 20 months before something unbearably stressful happened at work and I relapsed. Been puffin since. Wanting to quit again just not finding that "right time", and now.......omg, it's all I have right now. I wish you the best, and do try and enjoy yourself this weekend. *P0 -
Taleena, I understand your
Taleena, I understand your feelings of being alone and different from everyone else. And yes, it is the dx that does it. But that's what we are here for. So you or anyone else doesn't feel alone. And don't worry your little heart about not offering support. There's a time to give and a time to receive and this is your time to receive..........so you can give later. You have enough on your plate, please don't worry about these things. We are all thinking of you and sending you much love and hugs.
jan0 -
The Waiting Is Difficult...
Taleena,
I definitely know what you're going through and can relate. Last July 7th, I was diagnosed with breast cancer. Now that diagnosis is enough to set anyone off, however, in my situation it was beyond shocking. You see, I had a biopsy on June 25th of last year and to make a long story short, when I was waiting my turn for surgery the doctors at the hospital performed their own mammograms and proceeded to inform me that there was NO CANCER and I didn't even need to be there. Needless to say, I listened to my surgeon and he recommended the biopsy and besides, I was already set to go into surgery. As a result of that stupid comment by the doctors at the hospital (not my surgeon)I was all excited and was convinced there was no cancer. I mean after all, these doctors do these tests all day and they had to know what they were looking at. So on July 7, 2009 when I went for my follow-up after the biopsy on June 25th, I wasn't really that worried because after all, the doctors said it was nothing. Imagine the shock and horror when my breast surgeon said it was CANCER. Now I know I am extremely fortunate in that it was early Stage 1, I only needed a lumpectomy and six weeks or radiation. I had the Oncotype DX test performed but my results took until the end of August 2008 to come in. I had a lumpectomy on July 16th by a different surgeon who I liked better than the original and that caused somewhat of a delay because the test had to be performed on the samples from the biopsy and that was at a different hospital with a different doctor. Luckily my score came back as an 11, which meant chemo was not needed. I discussed all my options with my doctors and they all agreed. Therefore, I didn't take it. So, I can relate about the waiting and frustration. I had to wait from July 16th to the end of August and during that time I was in limbo. I made it through and so will YOU. I finished radition in October 2008, have had several mammograms since and all is well. Now I'm on Tamoxifen and have not had any problems with it. I was worried about side effects like menopause like symptoms because I am too young for menopause, but so far so good.
I'll be thinking of you and feel free to comment back. I hope I can be of help. I recently discovered this site and find it to be a tremendous help. We all are going through this together!0 -
~~Piggies said:The Waiting Is Difficult...
Taleena,
I definitely know what you're going through and can relate. Last July 7th, I was diagnosed with breast cancer. Now that diagnosis is enough to set anyone off, however, in my situation it was beyond shocking. You see, I had a biopsy on June 25th of last year and to make a long story short, when I was waiting my turn for surgery the doctors at the hospital performed their own mammograms and proceeded to inform me that there was NO CANCER and I didn't even need to be there. Needless to say, I listened to my surgeon and he recommended the biopsy and besides, I was already set to go into surgery. As a result of that stupid comment by the doctors at the hospital (not my surgeon)I was all excited and was convinced there was no cancer. I mean after all, these doctors do these tests all day and they had to know what they were looking at. So on July 7, 2009 when I went for my follow-up after the biopsy on June 25th, I wasn't really that worried because after all, the doctors said it was nothing. Imagine the shock and horror when my breast surgeon said it was CANCER. Now I know I am extremely fortunate in that it was early Stage 1, I only needed a lumpectomy and six weeks or radiation. I had the Oncotype DX test performed but my results took until the end of August 2008 to come in. I had a lumpectomy on July 16th by a different surgeon who I liked better than the original and that caused somewhat of a delay because the test had to be performed on the samples from the biopsy and that was at a different hospital with a different doctor. Luckily my score came back as an 11, which meant chemo was not needed. I discussed all my options with my doctors and they all agreed. Therefore, I didn't take it. So, I can relate about the waiting and frustration. I had to wait from July 16th to the end of August and during that time I was in limbo. I made it through and so will YOU. I finished radition in October 2008, have had several mammograms since and all is well. Now I'm on Tamoxifen and have not had any problems with it. I was worried about side effects like menopause like symptoms because I am too young for menopause, but so far so good.
I'll be thinking of you and feel free to comment back. I hope I can be of help. I recently discovered this site and find it to be a tremendous help. We all are going through this together!
Everyone... thank you so much for your input... I'm really doing well... I just hate the waiting... just like everyone else... two days.. crossing fingers... I pray it won't take until the end of next month... that would just be crazy...Piggies.. I can't imagine having to endure that kind of wait.... Obviously if you can survive that long of a wait.... I can survive another couple of days.....
Jeanne... thanks for the hug... it came through loud and clear... along with the message of taking the time to get out there and enjoy this weekend... THANK YOU All... once again...
I can do this... if all of you can do it ... I can too... even if it is with you all dragging me along.. kicking and screaming...lol...
Hugs to you my friends...
~T0 -
That means you are dragging me!!taleena said:~~
Everyone... thank you so much for your input... I'm really doing well... I just hate the waiting... just like everyone else... two days.. crossing fingers... I pray it won't take until the end of next month... that would just be crazy...Piggies.. I can't imagine having to endure that kind of wait.... Obviously if you can survive that long of a wait.... I can survive another couple of days.....
Jeanne... thanks for the hug... it came through loud and clear... along with the message of taking the time to get out there and enjoy this weekend... THANK YOU All... once again...
I can do this... if all of you can do it ... I can too... even if it is with you all dragging me along.. kicking and screaming...lol...
Hugs to you my friends...
~T
Remember, missy, your suppose to be first!! You better get that score by Tuesday!! I was getting anxious about my appointment too and decided to do some retail therapy...lots of deals going on out there ladies!!! (and men)
I love the new picture!! How adorable! Yes, you should get out there and enjoy yourself. Sit back, relax, get a cold one, enjoy the scenery, enjoy the scents, enjoy the food......just keep your clothes on when you jump in the lake after a few too many!!!
Hugs back to you and......cheers!!
Pammy 0 -
T,Akiss4me said:That means you are dragging me!!
Remember, missy, your suppose to be first!! You better get that score by Tuesday!! I was getting anxious about my appointment too and decided to do some retail therapy...lots of deals going on out there ladies!!! (and men)
I love the new picture!! How adorable! Yes, you should get out there and enjoy yourself. Sit back, relax, get a cold one, enjoy the scenery, enjoy the scents, enjoy the food......just keep your clothes on when you jump in the lake after a few too many!!!
Hugs back to you and......cheers!! Pammy
I am so sorry I did not
T,
I am so sorry I did not see your posting sooner. I think the waiting is the worst kind of hell and makes you crazy. I too am still smoking and feel like a fool but it has not stopped me yet so I understand completely. A great big hug from me and I hope you get your results tomorrow!
The shopping does really work, I did that yesterday and had a ball with all the presents I bought myself.
K0 -
Why does everyone trust this
Why does everyone trust this Oncotype test so much inre to whether or not you take chemo? I thought chemo was based on your tumor size, grade, stage and so on. So, if you have a 2 cm tumor with a stage 3 and your onco test said no chemo, you wouldn't take chemo? And, anyone know how long this test has been the setting stage for chemo?0 -
The oncotype test is used assusie09 said:Why does everyone trust this
Why does everyone trust this Oncotype test so much inre to whether or not you take chemo? I thought chemo was based on your tumor size, grade, stage and so on. So, if you have a 2 cm tumor with a stage 3 and your onco test said no chemo, you wouldn't take chemo? And, anyone know how long this test has been the setting stage for chemo?
The oncotype test is used as one more tool to determining chemo not as the only factor. Size, grade, node involvement, stage are key to determining chemo or not. This test is useful for Stage 1, no node involvement, low grade cancers where the effectiveness of doing chemo or not is harder to determine. The numbers can then help determine recurrence. Depending on the results, Low scores = no chemo, high scores = chemo and then there is a gray area that you and your oncologists need to discuss and decide on chemo or not. There is a clinical study going on for these numbers. Your score determines the group you are in for the study. Again low = no, high = yes and the middle group numbers are divided randomly into chemo or no chemo. I am in this study, have a middle ground number and have been put in the no chemo group. By studying this group, they will see how these numbers need to be divided in the future. They will study us for 10 years and more and see what the recurrences are and how our numbers and treatment relate to this. Then in the future there will no longer be a gray area (hopefully). I could have opt out of the study and done chemo if I wanted but since they don't know if it would help, I decided to stay in the study and help make the determination whether chemo helps this group. I am doing it for my daughter, her daughter and all those countless people that may get this disease in the future. I figure if I should have a recurrence I can do chemo then. It's still in my arsenal. Hope this clears up your question, Susie?
Stef0 -
Thanks Stef... sometimesfauxma said:The oncotype test is used as
The oncotype test is used as one more tool to determining chemo not as the only factor. Size, grade, node involvement, stage are key to determining chemo or not. This test is useful for Stage 1, no node involvement, low grade cancers where the effectiveness of doing chemo or not is harder to determine. The numbers can then help determine recurrence. Depending on the results, Low scores = no chemo, high scores = chemo and then there is a gray area that you and your oncologists need to discuss and decide on chemo or not. There is a clinical study going on for these numbers. Your score determines the group you are in for the study. Again low = no, high = yes and the middle group numbers are divided randomly into chemo or no chemo. I am in this study, have a middle ground number and have been put in the no chemo group. By studying this group, they will see how these numbers need to be divided in the future. They will study us for 10 years and more and see what the recurrences are and how our numbers and treatment relate to this. Then in the future there will no longer be a gray area (hopefully). I could have opt out of the study and done chemo if I wanted but since they don't know if it would help, I decided to stay in the study and help make the determination whether chemo helps this group. I am doing it for my daughter, her daughter and all those countless people that may get this disease in the future. I figure if I should have a recurrence I can do chemo then. It's still in my arsenal. Hope this clears up your question, Susie?
Stef
Thanks Stef... sometimes it's hard for me to explain..but you did a fantastic job! I am still waiting on these results... and will also be participating in the study if I end up in the middle...
Hugs,
~T0 -
It makes more sense, sortfauxma said:The oncotype test is used as
The oncotype test is used as one more tool to determining chemo not as the only factor. Size, grade, node involvement, stage are key to determining chemo or not. This test is useful for Stage 1, no node involvement, low grade cancers where the effectiveness of doing chemo or not is harder to determine. The numbers can then help determine recurrence. Depending on the results, Low scores = no chemo, high scores = chemo and then there is a gray area that you and your oncologists need to discuss and decide on chemo or not. There is a clinical study going on for these numbers. Your score determines the group you are in for the study. Again low = no, high = yes and the middle group numbers are divided randomly into chemo or no chemo. I am in this study, have a middle ground number and have been put in the no chemo group. By studying this group, they will see how these numbers need to be divided in the future. They will study us for 10 years and more and see what the recurrences are and how our numbers and treatment relate to this. Then in the future there will no longer be a gray area (hopefully). I could have opt out of the study and done chemo if I wanted but since they don't know if it would help, I decided to stay in the study and help make the determination whether chemo helps this group. I am doing it for my daughter, her daughter and all those countless people that may get this disease in the future. I figure if I should have a recurrence I can do chemo then. It's still in my arsenal. Hope this clears up your question, Susie?
Stef
It makes more sense, sort of. But, from what you wrote, it makes it sound like the Oncotype test is still in the clinical trial stage? That there is no long term proof that it works for sure in your decision of taking chemo or not? So, it is a gamble? If you are in that "grey" area?0 -
One good thing if yourtaleena said:Thanks Stef... sometimes
Thanks Stef... sometimes it's hard for me to explain..but you did a fantastic job! I am still waiting on these results... and will also be participating in the study if I end up in the middle...
Hugs,
~T
One good thing if your number is in the middle and you do the study, you don't have to decide chemo or not. I wanted a low number and I hope that you get one (1 or under) so that I would know that no chemo was the right choice. I didn't want a high number for obvious reasons but then again, it would answer the chemo, no chemo question with no what ifs. I thought I would freak out if the number was in the middle, but I was actually okay with that. And like I said, by doing the study I left it up to someone else to decide. Talk about abdicating responsibility. But the alternative would have been to talk with my oncologist (and that's only her opinion as well) or flip a coin. So for me it was decided and I am excited to be helping in the cancer fight. I feel like I am giving a gift to the future.
Stef0 -
There are stages in anysusie09 said:It makes more sense, sort
It makes more sense, sort of. But, from what you wrote, it makes it sound like the Oncotype test is still in the clinical trial stage? That there is no long term proof that it works for sure in your decision of taking chemo or not? So, it is a gamble? If you are in that "grey" area?
There are stages in any clinical trial. The test has gone through the initial stage and they know the recurrences rates for some of the numbers (the lows and highs). Now they are working to determine those pesky in betweens. Yes, in the gray area is a gamble. It's why tumor size, stage, grade, and all the other parts of the path report are used. Before this test was available, I am thinking that the Stage 1, no node involvement, low grade was a gamble on chemo or not. Then this test was developed and it answers this question for many woman with high or low scores. Now it is on to the next step. And honestly, all our treatments are a bit of a gamble. Some have small tumors, low grade, no node involvement, do chemo, rad, lumpectomies or mastectomies and still it recurs and some have high grade, large tumors, nodes, chemo, rads, and never have a recurrence. The bottom line is that each person must sit down with their team and look at all the facts and tests etc. and determine the best course of treatment for them. And everyone choices are different even when their cancers may seem identical. That's why we are here for each other. We give advise, tell our stories and hope that others can use bits and pieces of our journey to help them along their journey. But none of us are telling someone what they should do. We always tell others to be sure and talk with their team. We just share our experiences and sometimes that gives someone information to take back to their team and discuss.
Keep in mind that treatment has come a long, long way and that it will progress more and more. Clinical trials are being developed all the time and that they will help determine the future of breast cancer. But participating is up to the individual and so is using the results from them. If someone feels oncotype testing is too new and they are comfortable with it, they shouldn't use it. The same is true of the mammosite radiation. But they are legitimate tests and treatments, just new. Like lumpectomies used to be.
Each of us is in charge of our own destiny but we have tools and people to help guide us. Oncotype testing is one of those tools. Even when the doctors tell us chemo is absolutely necessary, the choice is still there to do it or not. For me it would be ridiculous to say no to a treatment that is necessary but I can't know the whys of someone else's decision.
Life is a bit of gamble, isn't it? I just hope that in this case, I'm the house.
Stef0 -
I have never seen anyone onfauxma said:There are stages in any
There are stages in any clinical trial. The test has gone through the initial stage and they know the recurrences rates for some of the numbers (the lows and highs). Now they are working to determine those pesky in betweens. Yes, in the gray area is a gamble. It's why tumor size, stage, grade, and all the other parts of the path report are used. Before this test was available, I am thinking that the Stage 1, no node involvement, low grade was a gamble on chemo or not. Then this test was developed and it answers this question for many woman with high or low scores. Now it is on to the next step. And honestly, all our treatments are a bit of a gamble. Some have small tumors, low grade, no node involvement, do chemo, rad, lumpectomies or mastectomies and still it recurs and some have high grade, large tumors, nodes, chemo, rads, and never have a recurrence. The bottom line is that each person must sit down with their team and look at all the facts and tests etc. and determine the best course of treatment for them. And everyone choices are different even when their cancers may seem identical. That's why we are here for each other. We give advise, tell our stories and hope that others can use bits and pieces of our journey to help them along their journey. But none of us are telling someone what they should do. We always tell others to be sure and talk with their team. We just share our experiences and sometimes that gives someone information to take back to their team and discuss.
Keep in mind that treatment has come a long, long way and that it will progress more and more. Clinical trials are being developed all the time and that they will help determine the future of breast cancer. But participating is up to the individual and so is using the results from them. If someone feels oncotype testing is too new and they are comfortable with it, they shouldn't use it. The same is true of the mammosite radiation. But they are legitimate tests and treatments, just new. Like lumpectomies used to be.
Each of us is in charge of our own destiny but we have tools and people to help guide us. Oncotype testing is one of those tools. Even when the doctors tell us chemo is absolutely necessary, the choice is still there to do it or not. For me it would be ridiculous to say no to a treatment that is necessary but I can't know the whys of someone else's decision.
Life is a bit of gamble, isn't it? I just hope that in this case, I'm the house.
Stef
I have never seen anyone on here really TELL someone what to do inre to treatment. I think we offer info on our OWN treatment plans and the results, side effects etc. We are all different, have different diagnosis's and are offered different treatments. It is always up to us to choose our plan, irregardless of what our TEAM of doctors say.
What I think is that if I was in the gray area, that I would do the chemo. I would be afraid that if it came back, it would be because I didn't take it. And, one can say, well if it comes back, I will just do chemo then. But, it might be too late then. Just offering my opinion.0 -
Noel,Noel said:I have never seen anyone on
I have never seen anyone on here really TELL someone what to do inre to treatment. I think we offer info on our OWN treatment plans and the results, side effects etc. We are all different, have different diagnosis's and are offered different treatments. It is always up to us to choose our plan, irregardless of what our TEAM of doctors say.
What I think is that if I was in the gray area, that I would do the chemo. I would be afraid that if it came back, it would be because I didn't take it. And, one can say, well if it comes back, I will just do chemo then. But, it might be too late then. Just offering my opinion.
I hope it didn't come
Noel,
I hope it didn't come off like I said anyone is telling someone what to do. I didn't say that or mean to imply that. I thought I said pretty much what you are saying.
And yes, I suppose that it is possible that if my cancer comes back it will be too late to do chemo but I am not sorry about making the choice I made. But that is my choice and we all have to do what works for us. I am sure that there are people who have had small tumors, no node involvement, low grade and a low score that still have asked to do chemo just to be sure. It is truly whatever gives us peace of mind.
Stef0
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