Been asked to be in Oncotype DX study/ and venting
Newbies: (I had bi-lateral masectomy/reconstruction using the tram procedure 7 weeks ago)
My very first visit with a Oncologist was this week. (diagnosed in May09) They have requested that I participate in a study for up to 20 years. they will pay for the oncotype test on the tumor if I agree. Depending on the score if it's 11 to 25 I would be put in a computer and randomly selected to recieve or not recieve chemo. if it's 10 or lower then no chemo just taximophen. and of course anything over 26 they will most definatly want me in chemo.. there are about 11,000 taking part in this study... I know how important these study's are for our future sisters. The only problem I'm having right now is if my recurrance score comes back above 10 and the compter radomly selects me for chemo. after doing so much research and reading the study paperwork and the side effects of all the drugs till my head feels like it's going to explode.. I am just not sure about being a guinea pig? The weird part of this?? the first thing my doc said to me when she said hi was WOW I can't belive your 49!! I thought you were in your 30's.. then went on to say she would like me to have chemo based on how young I look??? she kept repeating the age thing to me until I felt kinda weird... She graduated from high school in 1991.
I am more intrested in quality of life and doing whatever I can to be happy.. eating good, excercise, becoming closer to God...I've also read the thread on hormone therapy on here and am more confused than ever!! I don't want to put something in my body that is going to cause more problems if I don't have to!! and if I keep up with all the future scans and tests then I also feel if I had a recurrance it will be caught. Like Re said on her answer on another thread she knew something was wrong, and didn't stop bugging her doctors until she had the answers. I too knew something was wrong the first time.. But I put it off.. God gave us gut feelings and instincts for a reason... There's no guarantees about any of the drugs used. It can come back reguardless of how we choose to fight this beast. I am not anti drugs I do feel that the drugs do have very very very good benefits for all of us.. I guess I'm more talking out of my own fears of the side effects and taking medication.
Your Thoughts???
Calleen
P.S.. Jackie.. Rjjj I'm pretty sure I saw a picture of you holding a special candle in Honor of one of our Sisters...
Comments
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Calleen
I also get the OMG I can't believe your age. Most think I am so much younger than I am, which is great. It does make us feel good, doesn't it?
As far as your post, I am confused somewhat. What are you asking? Should you participate in a trial study? Only you can answer that. Should you do everything possible including chemo to stop and fight the beast? Yes you should! You only have one life, fight to keep it!
I didn't have a recurrence, I had a new bc 23 years later. And, even though it sucked to get bc again, I knew that 23 years ago, I did everything that was available to me to fight the beast! I never wanted to think, what if??????
Love, Jeanne ♥0 -
I'm sorry!!Jeanne D said:Calleen
I also get the OMG I can't believe your age. Most think I am so much younger than I am, which is great. It does make us feel good, doesn't it?
As far as your post, I am confused somewhat. What are you asking? Should you participate in a trial study? Only you can answer that. Should you do everything possible including chemo to stop and fight the beast? Yes you should! You only have one life, fight to keep it!
I didn't have a recurrence, I had a new bc 23 years later. And, even though it sucked to get bc again, I knew that 23 years ago, I did everything that was available to me to fight the beast! I never wanted to think, what if??????
Love, Jeanne ♥
I was giving an update and venting. and just asking for thoughts... I did forget to mention that I am scheduled for a ct scan, and bone scan next Wed.. They also had me scheduled for the heart scan called resting??? but I have postponed it until I get the results of oncotype...if it shows I need chemo the yes I will have it done if not then I just don't want unnessary tests done if I don't have to. Bills are really stacking up..0 -
Why?Calleen said:I'm sorry!!
I was giving an update and venting. and just asking for thoughts... I did forget to mention that I am scheduled for a ct scan, and bone scan next Wed.. They also had me scheduled for the heart scan called resting??? but I have postponed it until I get the results of oncotype...if it shows I need chemo the yes I will have it done if not then I just don't want unnessary tests done if I don't have to. Bills are really stacking up..
Calleen, why be sorry? For what? For venting? For being angry and worried? Hey, we all are like that and there is no saying you are sorry allowed on this board! So, take it back! I hope that my response didn't make you feel like you should say you are sorry in anyway. I just wanted to say that, in my opinion, everyone should do anything and everything possible to keep the beast away and out of our lives. I have had bc twice, and, I don't want anyone else to.
I am sorry that you are having so many tests run, but, we have all been thru that. And, good luck with your tests on Wednesday. Have you looked into some financial help thru ACS or something? Getting the tests are very important Calleen. You have to stay on top of this, please. Most cancer centers or hospitals will set-up a payment plan with you and most have some sort of financial assistance programs. Check into it if you want.
If your oncotype says you need chemo, I am glad to know that you will do it. So many women on here have gone thru it and will walk with you and hold your hand. I didn't have chemo, but, I will be here to support you in anyway that I can. Take care Calleen!
Love, Jeanne ♥
p.s. I thought that with any tumor over 2cm that chemo was always recommended. Maybe someone can clear that info up for me.0 -
Calleen, I am waiting on
Calleen, I am waiting on results of the Oncotype DX testing my Medical Oncologist recomended. If it comes back with a low number no chemo. If the number is higher and it gives me a higher chance of re-occurance, I will think about it. I'm not too opposed to RADS, I'm leary about the anti-hormone treatment. I am almost 60. the Oncotype dx test costs 3,9067. I was told this by the woman who called me from the Genomic Health where they do the studies. She said my Ins told her that the most they would pay is 80%, so it will be at least 800.00 for us. My tumor was 1.1 cms. I was ER positive.0 -
Lanielanie940 said:Calleen, I am waiting on
Calleen, I am waiting on results of the Oncotype DX testing my Medical Oncologist recomended. If it comes back with a low number no chemo. If the number is higher and it gives me a higher chance of re-occurance, I will think about it. I'm not too opposed to RADS, I'm leary about the anti-hormone treatment. I am almost 60. the Oncotype dx test costs 3,9067. I was told this by the woman who called me from the Genomic Health where they do the studies. She said my Ins told her that the most they would pay is 80%, so it will be at least 800.00 for us. My tumor was 1.1 cms. I was ER positive.
I wonder if your Oncologist has a study??? or knows of one?? this one is called "The Tailor-Rx Trial" ... they are paying for my test... anything to save money... it says there is going to be 11,000 participants and only 25 from my area... so the other participants have to come from somewhere??? Just a suggestion...0 -
He didn't say anything aboutCalleen said:Lanie
I wonder if your Oncologist has a study??? or knows of one?? this one is called "The Tailor-Rx Trial" ... they are paying for my test... anything to save money... it says there is going to be 11,000 participants and only 25 from my area... so the other participants have to come from somewhere??? Just a suggestion...
He didn't say anything about it being part of a Study. I spoke with a woman involved with it last week. she sent me a letter and a booklet on it.0 -
Calleen
Glad to see you posting again.
I was lucky and my insurance covered the test, but I was also asked to be in that trial, but I declined. My Onco told me that if I was in the trial and test came back in the middle that I would be put in one of two groups, chemo and no chemo, but that I wouldn't have a choice which one. So I said no, if I come back in the middle I wanted chemo, it scares me to take that kind of risk.
So she did the test and again I was lucky and my score was only 10. I felt so much better having the test because I feel better knowing I'm on the right track. For me Rad's and Tamoxifen was always a given, I'm okay with Rad's but the tamoxifen scares me too. But like I told her I will give it a try. After completing both my reoccurance rate drops down to less than 7%, if I were to walk away now, I'm looking at 25-30%. I like the other odds better.
This is a completely personal decission, and you need to feel good about your choice no matter what you decide.
I wish you lots of luck and peace, please post more often, and let us know how you're doing, I truely enjoy your posts.
God Bless,
Aurora0 -
hi cal
iwas diagnosed in end of june had surgery july 27th have my 9th fay of radiation today im 48 years old my tumor was 2.7 centimetiers no lymph node er pr positive her negative i had no spreading outside the breast my onco type was 1 no chemo but hershey medical center wouldnt allow this radom thing after radiation done im not sure i will be taking tamaifin
there is a blood test CYP2D6 to see if tamaifin will work properly in my body before i even take also i ahve a post here for financial help there are numbers to help you pay for oncotype test and other help for gas etc med god bless gl luv peggy dont enter a study just for that reason so many options out there you care is the number 1 importance here0 -
lanielanie940 said:Calleen, I am waiting on
Calleen, I am waiting on results of the Oncotype DX testing my Medical Oncologist recomended. If it comes back with a low number no chemo. If the number is higher and it gives me a higher chance of re-occurance, I will think about it. I'm not too opposed to RADS, I'm leary about the anti-hormone treatment. I am almost 60. the Oncotype dx test costs 3,9067. I was told this by the woman who called me from the Genomic Health where they do the studies. She said my Ins told her that the most they would pay is 80%, so it will be at least 800.00 for us. My tumor was 1.1 cms. I was ER positive.
hope you are well look and my post for financial there are places that help with this test god bless and there is blood test for tamoxifin to see if it will work properly god bless luv peggy0 -
jeanneJeanne D said:Why?
Calleen, why be sorry? For what? For venting? For being angry and worried? Hey, we all are like that and there is no saying you are sorry allowed on this board! So, take it back! I hope that my response didn't make you feel like you should say you are sorry in anyway. I just wanted to say that, in my opinion, everyone should do anything and everything possible to keep the beast away and out of our lives. I have had bc twice, and, I don't want anyone else to.
I am sorry that you are having so many tests run, but, we have all been thru that. And, good luck with your tests on Wednesday. Have you looked into some financial help thru ACS or something? Getting the tests are very important Calleen. You have to stay on top of this, please. Most cancer centers or hospitals will set-up a payment plan with you and most have some sort of financial assistance programs. Check into it if you want.
If your oncotype says you need chemo, I am glad to know that you will do it. So many women on here have gone thru it and will walk with you and hold your hand. I didn't have chemo, but, I will be here to support you in anyway that I can. Take care Calleen!
Love, Jeanne ♥
p.s. I thought that with any tumor over 2cm that chemo was always recommended. Maybe someone can clear that info up for me.
they dont go tumr size any more its the oncotype test for instance a gilr i met at hershey had a 1.2 centimter tumor and her oncotype was 85 my tumor was 2.7 centemeters and oncotype was 1 that is how hershey does i dont know about other hospitals god bless hope this helps luv peggy and ty for your posts on my rads and going throught them with mw0 -
I am hoping mine comes outaurora2009 said:Calleen
Glad to see you posting again.
I was lucky and my insurance covered the test, but I was also asked to be in that trial, but I declined. My Onco told me that if I was in the trial and test came back in the middle that I would be put in one of two groups, chemo and no chemo, but that I wouldn't have a choice which one. So I said no, if I come back in the middle I wanted chemo, it scares me to take that kind of risk.
So she did the test and again I was lucky and my score was only 10. I felt so much better having the test because I feel better knowing I'm on the right track. For me Rad's and Tamoxifen was always a given, I'm okay with Rad's but the tamoxifen scares me too. But like I told her I will give it a try. After completing both my reoccurance rate drops down to less than 7%, if I were to walk away now, I'm looking at 25-30%. I like the other odds better.
This is a completely personal decission, and you need to feel good about your choice no matter what you decide.
I wish you lots of luck and peace, please post more often, and let us know how you're doing, I truely enjoy your posts.
God Bless,
Aurora
I am hoping mine comes out like yours, a low number. I'm STILL waiting for the final answer on the lymph nodes they tested on my left breast side, they sais so far ir doesn't appear to be cancer, keeping fingers crossed.0 -
I was going to do the studyCalleen said:Lanie
I wonder if your Oncologist has a study??? or knows of one?? this one is called "The Tailor-Rx Trial" ... they are paying for my test... anything to save money... it says there is going to be 11,000 participants and only 25 from my area... so the other participants have to come from somewhere??? Just a suggestion...
I was in the study, Calleen. But I was put into the third class, "watch & see" one, because my score came back less than a one. The good news is I will still be watched very carefully. My insurance did not considered the test a covered expense, but it was still paid for. Also, Genomic Labs has grant money you can apply for to cover what is not paid. I didn't do it for cost reasons, I did it because I wanted to help. You can also opt out of the study at any point and for any reason. So if you were randonized into the group that was not receiving the chemo and you wanted it, you can just opt out and tell them you no longer wish to be in the study.... ♥ Pammy0 -
Peggy,I don't think wepeggypeggy said:hi cal
iwas diagnosed in end of june had surgery july 27th have my 9th fay of radiation today im 48 years old my tumor was 2.7 centimetiers no lymph node er pr positive her negative i had no spreading outside the breast my onco type was 1 no chemo but hershey medical center wouldnt allow this radom thing after radiation done im not sure i will be taking tamaifin
there is a blood test CYP2D6 to see if tamaifin will work properly in my body before i even take also i ahve a post here for financial help there are numbers to help you pay for oncotype test and other help for gas etc med god bless gl luv peggy dont enter a study just for that reason so many options out there you care is the number 1 importance here
Peggy,I don't think we would qualify for financial help, not that we are wealthy, but we are middle middle class, does that make sense? I think I may ask to try Arimedex. Heck, I'd like to skip ALL of it. LOL So many side effects.0 -
lanielanie940 said:Peggy,I don't think we
Peggy,I don't think we would qualify for financial help, not that we are wealthy, but we are middle middle class, does that make sense? I think I may ask to try Arimedex. Heck, I'd like to skip ALL of it. LOL So many side effects.
some of these places just help you to appeal for your insurance to pay seeig oncotype is genetic testing these places dont go by income they just help god bless hag weekend luv peg0 -
Oh lanielanie940 said:I am hoping mine comes out
I am hoping mine comes out like yours, a low number. I'm STILL waiting for the final answer on the lymph nodes they tested on my left breast side, they sais so far ir doesn't appear to be cancer, keeping fingers crossed.
I will definately being praying for you and keeping my fingers crossed. I hope your score is low and your nodes are clean.
You should call the lab back and ask to apply for that grant Pammy was talking about, mine was cover but the doctor said that my insurance may not cover the Tamox test and I really want that, I sure don't want to take something that's not even working on me! So I'm going check out Peggy's finanial post, I know she did alot of research, in fact I think I put it in my favorites, I'll look and Bump it for you okay.
Lots Of Luck coming your way,
Aurora0 -
laniepeggypeggy said:lanie
some of these places just help you to appeal for your insurance to pay seeig oncotype is genetic testing these places dont go by income they just help god bless hag weekend luv peg
I would try Peggy's advice in fact I am going to
, I only have med-ical and they covered the onco test, if they don't cover the tamox test that my doctor has already ordered, I will also appeal. It can't hurt to try, if nothing else just to get the best care and right treatment plan.
Good Luck
Aurora0 -
opt out of the clinical trial
Calleen,
At any point in the study, you can opt out. So participate, but if you don't like that you are randomly assigned chemo in the middle score range--decline to participate.
It is your right to change your mind. Being followed up contributes greatly, so if your score is low, no chemo, but your results are part of the data. Same if your score is high and you do chemo--your results for the next 20 years or however long the study is--are part of the data.
I wasn't eligible because I had bilateral synchronous cancers--or two tumors at the same time, different breasts.
(I did the Oncotype DX testing off-study, 9 for one tumor, 16 for the other, no chemo, just tamoxifen.)
Lisa0 -
My husbands ins is fairlyaurora2009 said:lanie
I would try Peggy's advice in fact I am going to, I only have med-ical and they covered the onco test, if they don't cover the tamox test that my doctor has already ordered, I will also appeal. It can't hurt to try, if nothing else just to get the best care and right treatment plan.
Good Luck
Aurora
My husbands ins is fairly decent, if it is submitted BEFORE Oct first, they will have to pay all but 20% since that is what they say for "out of network" which the oncotype dx test would be, so it would be 800.00 which we can afford. If they fart around and haggle and wait till after Oct 1st, then they could charge us 1,800. Since we have to pay 1,000 out of pocket anyway before they cover 100%.
This was on my path report after surgery;
Nuclear grade score 2(moderate nuclear pleomorphism)
Tubule grade score3 (minimal tubule formation) mitotic rate 2(moderately diferentiated)
tumor size 1.1 cm
ER 95% positive Favorable
PR < 1% Negative Uncertain in view of ER positivity
Mitotic rate (per 10 HPF) score 2 moderate mitotic rate)
HER-2/neu 0 Negative
At least Stage 1
Was sent for mammoprint---- tissue amount was too small for them to check, that is why my Onco ordered the oncotype dx.0
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