Confused, need some advice, input - someome tell me what to do!
The worst part is okay we do the test and it comes back "inconclusive" and here I am again having to make the decision myself and the test was no benefit. Crap. Everyone keeps saying you're so young (50 yrs), you should do all you can. Yesterday I was ready to do chemo, now after a little more research, don't think I want to go through it, if it doesn't make a significant impact on recurrence.
I give up, I can't think anymore. Thoughts? Has anyone had this test that really benefited them? Taken chemo without the test? Had chemo when benefit wasn't clear?
Any advice, thoughts, experiences are always appreciated!
Thanks!
Comments
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Very similar
I was dx Jan 29th 2010 about 3 weeks before my 49th birthday. I was ER/PR + no nodes HER2- I was told the same thing that since I was so young my Onc. thought I should do chemo. I did not do the oncotype test. My personal thought was I wanted to do all I could to keep it away. I did 4 rounds of Cytoxan and Taxotere. I never got sick just really tired feeling, diahrea, constipation,hot flashes and a few other minor issues. It was not fun but very doable I had 30 rads and started Tamoxifen, I have had my ovaries removed just recently and switched to Aromasin. This is just my opinion but if I had to do it all over again I would do the same thing. Please just ask if I can answer anything else. God Bless
(((hugs))) Janice0 -
I appreciate your input.Boppy_of_6 said:Very similar
I was dx Jan 29th 2010 about 3 weeks before my 49th birthday. I was ER/PR + no nodes HER2- I was told the same thing that since I was so young my Onc. thought I should do chemo. I did not do the oncotype test. My personal thought was I wanted to do all I could to keep it away. I did 4 rounds of Cytoxan and Taxotere. I never got sick just really tired feeling, diahrea, constipation,hot flashes and a few other minor issues. It was not fun but very doable I had 30 rads and started Tamoxifen, I have had my ovaries removed just recently and switched to Aromasin. This is just my opinion but if I had to do it all over again I would do the same thing. Please just ask if I can answer anything else. God Bless
(((hugs))) Janice
It sounds like you are just like me :-) I was ready to do the chemo yesterday regardless, as you said let's not take any chances, but then read up on the chemo meds, SAME AS YOURS and the side effects just sound nasty. Can I have your issues? I can live with those. Now I'm reading stuff about your hair not coming back as a side effect, etc. Is it so weird I put so much on my appearance and not living a long life? Seems stupid to even consider total hair loss as a factor to whether you can live longer, right? How was your hair loss? Has it grown back like it was? Like I said, stupid to be focusing on the superficial as opposed to life, but unfortunately how we look affects so much of how we feel.
Did you go through any depression? Were you able to work with chemo treatments?
I will have radiation after chemo too, and then tamoxifen. I am a healthy fairly active person, so I would hope that would also make the side effects less, but who knows?
Thank you so much for sharing with me and supporting my original thought.
Hugs and prayers.
Eileen0 -
Never think anyway you feeliluvmykids said:I appreciate your input.
It sounds like you are just like me :-) I was ready to do the chemo yesterday regardless, as you said let's not take any chances, but then read up on the chemo meds, SAME AS YOURS and the side effects just sound nasty. Can I have your issues? I can live with those. Now I'm reading stuff about your hair not coming back as a side effect, etc. Is it so weird I put so much on my appearance and not living a long life? Seems stupid to even consider total hair loss as a factor to whether you can live longer, right? How was your hair loss? Has it grown back like it was? Like I said, stupid to be focusing on the superficial as opposed to life, but unfortunately how we look affects so much of how we feel.
Did you go through any depression? Were you able to work with chemo treatments?
I will have radiation after chemo too, and then tamoxifen. I am a healthy fairly active person, so I would hope that would also make the side effects less, but who knows?
Thank you so much for sharing with me and supporting my original thought.
Hugs and prayers.
Eileen
Never think anyway you feel is wrong or stupid ok!! How we look is part of who we are and how we feel about ourselves. My hair started coming out by the handful on day 13 after first tx That seems to be a fairly common time frame. I had my head shaved the next day. I am sure my hair would have held on a little longer but I wanted to have control over something so I had my daughter in law buzz it off. That was on May 14th-10. My last chemo was July 2nd-10. My hair came back pretty much the same color and texture but really curly!! I went topless, as we say
) in October, my hair was very short but it grew in thick and was covering pretty well. The more it grew the curlier it got. I do have a little natural curl but not that much. I got it cut short a couple of months ago but there is still a little curl as it is growing.The biggest difference I have noticed is my hair parts on the side now. I have always had a natural part in the middle so I am not sure what to do with a side part haha. Use lots of gel! I am going to try to be patient enough to let it grow longer and try another hairstyle and color! I had a really nice wig but I did not wear it much it was hot weather at the time and it made me hotter. I wore bandanas mostly and ball caps. Please feel free to ask anything. There are wonderful people here with great advice. You can send me a private message if you want. I gotta get for now, have to go buy groceries, yuck! Check in later today. God Bless
(((hugs))) Janice0 -
I was diagnosed as ErPr+,Boppy_of_6 said:Never think anyway you feel
Never think anyway you feel is wrong or stupid ok!! How we look is part of who we are and how we feel about ourselves. My hair started coming out by the handful on day 13 after first tx That seems to be a fairly common time frame. I had my head shaved the next day. I am sure my hair would have held on a little longer but I wanted to have control over something so I had my daughter in law buzz it off. That was on May 14th-10. My last chemo was July 2nd-10. My hair came back pretty much the same color and texture but really curly!! I went topless, as we say) in October, my hair was very short but it grew in thick and was covering pretty well. The more it grew the curlier it got. I do have a little natural curl but not that much. I got it cut short a couple of months ago but there is still a little curl as it is growing.The biggest difference I have noticed is my hair parts on the side now. I have always had a natural part in the middle so I am not sure what to do with a side part haha. Use lots of gel! I am going to try to be patient enough to let it grow longer and try another hairstyle and color! I had a really nice wig but I did not wear it much it was hot weather at the time and it made me hotter. I wore bandanas mostly and ball caps. Please feel free to ask anything. There are wonderful people here with great advice. You can send me a private message if you want. I gotta get for now, have to go buy groceries, yuck! Check in later today. God Bless
(((hugs))) Janice
I was diagnosed as ErPr+, Her2-. Stage 1, Grade 2. My oncologist brought my attention to a study that included the oncotype test. They said that if insurance didn't cover it, their office would. There was no charge to me. My oncotype number was 8. a very low reoccurance score. I think that the grey area is above 15, below 30. above 30 definately would have chemo. If you were in the grey area, then you may or may not receive chemo. I was thrilled to not have chemo. I also was 49 at diagnosis. I guess for me, I became part of the study so that I could help others down the road. I hope that you find peace in your decision. blessings. mary0 -
My dx left me no choice about chemo and rads
So I will weigh in on chemo side effects. I really wouldn't want to do it every day, but it was doable. I was blessed to have help from my mom who stayed with us a couple of days after each treatment so I could just worry about me. I had the same type of side effects, nausea, constipation, fatigue, bone pain with Taxol, insomnia with the steroids and some overall yuckiness. But 3 months later I am doing great. My hair has grown back enough that I gave up my wig last week and while I didn't enjoy being bald I was careful in choosing my wig and a lot of people had no clue.
Make the decision that is right for you, doctors can't choose for us and I can't choose for you. But also don't let side effects keep you from doing chemo if that is what you feel will give you peace of mind.
Cancer is such a crazy ride, I wish you peace in making your decision,
Jennifer0 -
I had same dx
I had the same dx and did the Oncotype test. It came back as a 22 which is in the unclear or inconclusive category. So, reluctantly I did the chemo. Unfortunately, I was allergic to it and it devastated my body. I ended up in the hospital fighting the allergic reaction and the extremely low white blood counts after the 1st treatment. All of my hair all over my body fell out and took months to even start growing back. The treatment was Cytoxin and Taxotere. Some women do experience permanent hair loss. I have hair now but it is still thin and completely different than what I had before. It has been very slow growing back.I stopped treatments after the 1st. It took months for me to regain my strength. I had 8 weeks of rads too. The one thing I will say is to consider you life situation. I live alone and have no family in town. My friends were all busy with their own lives so the week I was suffering at home with the chemo before I was hospitalized was the worst week of my life. I was alone and saw no one for 8 days. I called the dr office several times and was told that all was ok and to just rest. Since I did not know what to expect, I did as was told. Fortunately, my body reached a crises mode and at 4 am one morning I called the emergency number for the dr and got the on-call dr who was not my dr. She told me to call a friend to drive me straight to the emergency room. I did and I survived ... barely.
I was in the best shape of my life and never felt better before this happened. I am slowly regaining my strength and energy. I am walking again and back to gentle yoga. The tamoxifen is a whole another story ... my body does not like drugs. Everyone is different. You have to trust your instinct and do what its telling you to do.0 -
I WENT TROUGH THE VERY SAME
Same DX, same procedure lumpectomy estrogen+ her- my tumor was very tiny .6 cmm my surgeon never mention chemo, i had even the OK to plan a summer vacay and then the genomics test results came back UGH! i scored 25 is slightly high with a chance of reocurrance of 16% without chemo, 4 rounds of taxotere and citoxan combo, which i relunctantly agree just because all my family got involved, i was totally opposed, even my surgeon! - I want to tell you that i just finished my treatments, and it was no picnic but honest to God i feel it was the best decision i took ever since i was diagnosed, i feel at peace that i'm doing all in my power to get rid of this and get my beautiful life back - it was tough but doable, the only hard time i had was with the neulasta shot which is the one that protects the bone marrow and a little neuropathy i developed in my elbows because of it but im going to a recovery therapy and rest and start with the rest of the treatments.
I know you are going to be just fine.
Cheers and good luck to you!0 -
When I was dx with stage 1/2
When I was dx with stage 1/2 (one report said stage 1, surgeon said stage 2 because it was outside the margins when she did a biopsy), 1.94 cm tumor, no node involvement. One onco said no reason for chemo that the chances of a recurrence were slim to none. 2nd opinion onco said because of the size of the tumor (er pr + her -) and the fact that I had been on HRT therapy, that he felt that the HRT was what caused the cancer, I needed chemo, so I did the AC. It gave me 8 1/2 years clear.
These decisions are always hard and I don't regret my decision to go with the chemo and the onco. Only you can make the decision and it isn't an easy one to make! Prayers and good wishes on whatever decision you make.0 -
chemo
I wasn't given a choice. The side effects weren't bad, not fun but doable. I had 4 AC and 12 Taxol. 5 months of chemo. My hair started to grow back during the Taxol. One of the women at the YMCA used the "cold cap" and she did not loose her hair! You could check into that.
You have to make the choice your self for your self but I would do what ever I can to prevent it coming back.
Cindy0 -
hi I did have chemocctiz said:I WENT TROUGH THE VERY SAME
Same DX, same procedure lumpectomy estrogen+ her- my tumor was very tiny .6 cmm my surgeon never mention chemo, i had even the OK to plan a summer vacay and then the genomics test results came back UGH! i scored 25 is slightly high with a chance of reocurrance of 16% without chemo, 4 rounds of taxotere and citoxan combo, which i relunctantly agree just because all my family got involved, i was totally opposed, even my surgeon! - I want to tell you that i just finished my treatments, and it was no picnic but honest to God i feel it was the best decision i took ever since i was diagnosed, i feel at peace that i'm doing all in my power to get rid of this and get my beautiful life back - it was tough but doable, the only hard time i had was with the neulasta shot which is the one that protects the bone marrow and a little neuropathy i developed in my elbows because of it but im going to a recovery therapy and rest and start with the rest of the treatments.
I know you are going to be just fine.
Cheers and good luck to you!
I was 46
young patient are treated more agressively than old ones
Second opinion from medical oncologist make sense. Surgeon usually does not give recommendations for chemo treatment.
chemo does prevent recurrence, weather you will benefit from it, nobody give you a 100% answer
Please understand we, breast cancer patients have to take full responsibilities for our own choices
Hugs0 -
I had the test
I have ICD, my tumor was fairly small, I was 51 yo at diagnosis in July 2009. I was first told recommendation was lumpectomy and radiation. Had the Oncotype DX test, and wsa in the higher range, so docs recommended lumpectomy, chemo, then radiation. I was really sad at having to have chemo, because I am a more private person...could have had radiation without people really knowing--no hair loss! However, I chose to have the chemo in addition to everything else. I want to fight with everything there is! The chemo side effects were not pleasant, but I am still here! Hair loss did occur. I wore wigs, hats, and just tried to be as stylish as possible. (I kept working except for a few days off with each taxotere/cytoxan infusion). Hair is back now, and I have come to be more open about my diagnosis. Friends were mostly supportive (some of them say things that seem offensive but they are mostly due to ignorance). Prayers to you as you make YOUR decisions.
Sybil
0 -
Chemo was not recommendedmjjones453 said:I was diagnosed as ErPr+,
I was diagnosed as ErPr+, Her2-. Stage 1, Grade 2. My oncologist brought my attention to a study that included the oncotype test. They said that if insurance didn't cover it, their office would. There was no charge to me. My oncotype number was 8. a very low reoccurance score. I think that the grey area is above 15, below 30. above 30 definately would have chemo. If you were in the grey area, then you may or may not receive chemo. I was thrilled to not have chemo. I also was 49 at diagnosis. I guess for me, I became part of the study so that I could help others down the road. I hope that you find peace in your decision. blessings. mary
Chemo was not recommended for me, so, I was quite relieved. I did not have the Oncotype test either. You do whatever you feel will be the best for you.
Good luck,
Diane0 -
Thank you all so much!
Your input means so much to me, I'm not asking for anyone to tell me what to do, I was really just venting out my frustrations at what I was told initially and then what the oncologist told me. I had my mind "set" on what was going to happen, and this was just a curve ball.
I plan to spend time on the phone with the insurance co tomorrow, if they will pay for the test, then talk to the oncologist and see if the test in any way would benefit my daughter in the future, if that answer is yes, I will have the test done. If not, we'll just do the chemo for that added insurance.
I was freaking out a little on that first post, so sorry if I sounded like I wanted someone to tell me what to do - I was just frustrated with the indefinative course of action, I was hoping for something more sure.
Love and hugs to all. Thanks so much for being here!
Eileen0 -
my 2 cents!
I didn't have the Oncotype test. I was 34. I had Er-, Pr+, Her2- cancer in my right breast. No lymph node involvement. I wasn't given a choice whether or not to have chemo - because of my young age (my doctors explained to me that in younger women the cancer tends to be more aggressive)-the chemo was without a question my next line of defense after having both of my breasts removed. Chemo is systemic, meaning it kills any stray cancer cells that may be lurking around. Nobody wants to go through chemo, but you have to ask yourself if you will be 100% comfortable with a decision not to have it. It's no walk in the park, but it IS completely do-able. Aside from the benefit of it killing any stray cells, you also get the benefit of peace of mind that you've done everything in your power to fight this cancer. Im not at all trying to tell you what's best for you! Just giving you my feelings on the matter. I was terrified of chemo. When my doctor gave me the results from my biopsy that said i did indeed have cancer, i was even MORE upset when he then told me that I would need chemo also. Someone on this site said something that's really stuck with me, when I was trying to decide on whether to have mastectomy or lumpectomy. I had posted about trying to make that decision, and she said "I'd rather look back on this and think that I had done too MUCH, rather than too little". It is an extremely personal decision, and I can imagine a terribly difficult decision, to make. Best of luck to you
*hugs*
heather0 -
Eileen, you didn't sound freaky to me...iluvmykids said:Thank you all so much!
Your input means so much to me, I'm not asking for anyone to tell me what to do, I was really just venting out my frustrations at what I was told initially and then what the oncologist told me. I had my mind "set" on what was going to happen, and this was just a curve ball.
I plan to spend time on the phone with the insurance co tomorrow, if they will pay for the test, then talk to the oncologist and see if the test in any way would benefit my daughter in the future, if that answer is yes, I will have the test done. If not, we'll just do the chemo for that added insurance.
I was freaking out a little on that first post, so sorry if I sounded like I wanted someone to tell me what to do - I was just frustrated with the indefinative course of action, I was hoping for something more sure.
Love and hugs to all. Thanks so much for being here!
Eileen
Hi, I could totally relate! You didn't sound like you were freaking out to me...because I have totally been there! Please ask questions or vent if you need to. That is why this site is here.
Hugs,
Sybil0 -
Oncotype TestHeatherbelle said:my 2 cents!
I didn't have the Oncotype test. I was 34. I had Er-, Pr+, Her2- cancer in my right breast. No lymph node involvement. I wasn't given a choice whether or not to have chemo - because of my young age (my doctors explained to me that in younger women the cancer tends to be more aggressive)-the chemo was without a question my next line of defense after having both of my breasts removed. Chemo is systemic, meaning it kills any stray cancer cells that may be lurking around. Nobody wants to go through chemo, but you have to ask yourself if you will be 100% comfortable with a decision not to have it. It's no walk in the park, but it IS completely do-able. Aside from the benefit of it killing any stray cells, you also get the benefit of peace of mind that you've done everything in your power to fight this cancer. Im not at all trying to tell you what's best for you! Just giving you my feelings on the matter. I was terrified of chemo. When my doctor gave me the results from my biopsy that said i did indeed have cancer, i was even MORE upset when he then told me that I would need chemo also. Someone on this site said something that's really stuck with me, when I was trying to decide on whether to have mastectomy or lumpectomy. I had posted about trying to make that decision, and she said "I'd rather look back on this and think that I had done too MUCH, rather than too little". It is an extremely personal decision, and I can imagine a terribly difficult decision, to make. Best of luck to you
*hugs*
heather
Because my oncotype score was high and I had chemotherapy, I feel pretty strongly about the importance of this test. I was really on the fence and don't know what I would have done had my score been in the mid/inclusive/gray area, nor do I know what I would have done without knowing my score. I was very surprised it was high. I did chemotherapy with no hesitation.
Chemotherapy is nasty stuff and if you know from your oncotype score that it won't improve your chance of recurrence (i.e., you have a low score) this is important to know, as is the other end of the spectrum.
If your insurance won't pay for the test, there is probably funding available somewhere (i.e., Komen foundation). I have a breast cancer peer navigator meeting Wednesday night, I'll ask about funding resources for oncotype tests. Mine was covered by my insurance.
It's less expensive for your insurance to pay $4K for the oncotype test and not have to pay for chemotherapy at approximately $12K per infusion. . .
Suzanne0 -
Funding for Oncotype DX testDouble Whammy said:Oncotype Test
Because my oncotype score was high and I had chemotherapy, I feel pretty strongly about the importance of this test. I was really on the fence and don't know what I would have done had my score been in the mid/inclusive/gray area, nor do I know what I would have done without knowing my score. I was very surprised it was high. I did chemotherapy with no hesitation.
Chemotherapy is nasty stuff and if you know from your oncotype score that it won't improve your chance of recurrence (i.e., you have a low score) this is important to know, as is the other end of the spectrum.
If your insurance won't pay for the test, there is probably funding available somewhere (i.e., Komen foundation). I have a breast cancer peer navigator meeting Wednesday night, I'll ask about funding resources for oncotype tests. Mine was covered by my insurance.
It's less expensive for your insurance to pay $4K for the oncotype test and not have to pay for chemotherapy at approximately $12K per infusion. . .
Suzanne
Check this out: http://www.oncotypedx.com/en-US/Breast/PatientCaregiver/InsuranceInfo.aspx0 -
Chemo
Like Heather, I was not given a choice as to whether or not I would have chemo.
But, I agree. It is certainly not fun, but definitely doable. I also opted for a bilateral mastectomy (coming up on Thursday) to know that I am doing everything I can to beat this.
Wishing the best to you.
V 0 -
My onc
did not recommend Onco dx test. I was the 5th in my family with bc and had bilateral mastectomy. My surgeon didn't think I would need chemo but onc said otherwise. I had 6 rounds of Taxotere/Cytoxan and rad onc said 28 rads. I'll do whatever to lessen my chance of recurrence. We go through so many tests it can be mind boggling. Sometimes it is hard to keep it all straight and know what's best to do.
{{hugs}} Char0
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