Confused, need some advice, input - someome tell me what to do!

iluvmykids

Double 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

Wow, I have not gotten to
Wow, I have not gotten to the chemo cost, really? $12K? OMG, I had no idea it would be that bad, isn't it amazing how costs can just be out of this world? Thanks for sharing your experience, Suzanne, after several phone calls (ins., hosp., oncolo.), for 15 minutes I was eligible for a trial, then oops, no, to qualify I would've needed to be node positive. After all the calls, it appears the insurance will pay for it, so I am having it done. If I end up in the mid-range, I will do chemo, it's too bad it's not a cut and dry result.

Take care.

iluvmykids

Vigee said:

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</p>

I will be thinking of you on
I will be thinking of you on Thursday and sending prayers your way. We try to make the best choices with the information the doctors give us, I think it would've been easier if the doc had just told me, you need chemo.

Take care and all the best to you too.

iluvmykids

cahjah75 said:

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}} Char

Thanks so much for the hugs!
It is certainly mind boggling. I think my decisions would be so much more solid if there was history in my family, but there isn't. We just have to make the best choices with the information we have, even if it conflicts. If I end up taking chemo it will be the same drugs but for 4 treatments, then 30 rounds of radiation, then tamoxifen for 5 years. So many tests, so little time!

Thanks for sharing yourself!

Angie2U

iluvmykids said:

Thanks so much for the hugs!
It is certainly mind boggling. I think my decisions would be so much more solid if there was history in my family, but there isn't. We just have to make the best choices with the information we have, even if it conflicts. If I end up taking chemo it will be the same drugs but for 4 treatments, then 30 rounds of radiation, then tamoxifen for 5 years. So many tests, so little time!

Thanks for sharing yourself!

Wishing you the best of luck
Wishing you the best of luck with your treatment.


Hugs, Angie

Angie2U

iluvmykids said:

Thanks so much for the hugs!
It is certainly mind boggling. I think my decisions would be so much more solid if there was history in my family, but there isn't. We just have to make the best choices with the information we have, even if it conflicts. If I end up taking chemo it will be the same drugs but for 4 treatments, then 30 rounds of radiation, then tamoxifen for 5 years. So many tests, so little time!

Thanks for sharing yourself!

Wishing you the best of luck
Wishing you the best of luck with your treatment.


Hugs, Angie

MusicMama

I had same dx at age 46.
I had same dx at age 46. Planned on doing chemo but was talked out of it by 3 different docs. I did have oncotype test done. It was 16. I had lumpectomy, radiation & tamoxifen. 1 1/2 yrs post dx & so far so good! I did not like having to make the decision! Best of luck to you!

Diane

sunny_girl

I decided against chemo
3 1/2 years ago I was diagnosed Grade 1 / Stage 2 - 4cm (non-palpable) IDC at 41. I did the Onco-type DX, and it came back 12 (8% risk of recurrance with Tamoxifen). One oncologist wanted to hook me up to chemo just based on the size, despite the statistics saying I would have been more likely to have a recurrance if I DID chemo (I suppose it is because of the damage to the immune system). My other (better) oncologist said it was my decision. My Ki67 was <1% (very slow growing) - and chemo works by killing fast growing cells, so even if I my cancer spread, chemo probably wouldn't have killed it. So far, so good.
Another consideration is that chemo drugs stop working in people after multiple doses - so if you have another (more aggresive) cancer or recurrance in the future, you may want to have all the drugs available and working. Yes, it is a difficult decision.
Best luck finding a decision that you feel comfortable with.

sinee

sunny_girl said:

I decided against chemo
3 1/2 years ago I was diagnosed Grade 1 / Stage 2 - 4cm (non-palpable) IDC at 41. I did the Onco-type DX, and it came back 12 (8% risk of recurrance with Tamoxifen). One oncologist wanted to hook me up to chemo just based on the size, despite the statistics saying I would have been more likely to have a recurrance if I DID chemo (I suppose it is because of the damage to the immune system). My other (better) oncologist said it was my decision. My Ki67 was <1% (very slow growing) - and chemo works by killing fast growing cells, so even if I my cancer spread, chemo probably wouldn't have killed it. So far, so good.
Another consideration is that chemo drugs stop working in people after multiple doses - so if you have another (more aggresive) cancer or recurrance in the future, you may want to have all the drugs available and working. Yes, it is a difficult decision.
Best luck finding a decision that you feel comfortable with.</p>

Congratulations.
Grade 1, good for you, glad you have such options~take your time~breath~gather info, just like you are doing and don't feel rushed into making a decision. Not even when you make the decision is it written in stone, you can change your minde latter..So happy that you have no lymph involvment and it was caught early~woohoo~making decisions is hard, you will gather the info you need to make the decision, and do ask your doctor what he thinks is the best route, you don't have to take it, but it might help to know. The good news is, you are going to be ok~Sinee

buckeye2

I am exactly where you are
I am exactly where you are with the chemo or no chemo decision. Had lumpectomy in June. I am ER PR+ Her 2-. I did the onctotype and onc. says results show chemo unnecessary. I think you should do the oncotype. Chemo is too toxic to be taking as a preventative therapy without data to support the need. Lisa

DebbyM

mamolady said:

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.

Cindy

Many do not have a choice by
Many do not have a choice by their doctors to take chemo or not. Sometimes it is imperative that they take it to save their lives.

Some are offered it but are told that it won't improve their chances by a lot, and, some take it and some don't.

It is really up to you whether you do or not.


Best of luck!

Annette 11

I had a bilat. mast. and had
I had a bilat. mast. and had chemo. I would not change a thing. I echo Heather's reply. I feel very much the same. I did it, it's over and I did my best and followed what my dr's advised. This is never easy. BC is horrible and so scary but do everything you can so you see the light at the end of this tunnel.
Annette

Alexis F

iluvmykids said:

I will be thinking of you on
I will be thinking of you on Thursday and sending prayers your way. We try to make the best choices with the information the doctors give us, I think it would've been easier if the doc had just told me, you need chemo.

Take care and all the best to you too.

I'll be thinking of you
I'll be thinking of you Thursday and sending positive thoughts and prayers.


Lex

Kylez

grams2jc said:

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,

Jennifer

Chemo is doable as many on
Chemo is doable as many on here go thru it and many even still work. The oncotype test might help you to really make your decision.

Someone on here, I can't remember who it was now, contacted the company and I believe they reserve money for some, so, you don't have to pay for it. You might ask your oncologist about this also.

I wish you the best in whatever you do.


Kylez

deeb111

hello hope this helps
Im not telling you what to do but iwas diagnosed with IDC same thing low grade no lymph involved all of my docs said just radiation they have whats called breast conferance once week and all involved go bs ps mo ro nurses so they all stay on same page they said they would only do chemo if it was found in lymphnodes cause you dont want overkill now IM 47

Kaycee47

Second opinion. What type of
Second opinion. What type of Ca was found. I had stage 1 but it was invasive lobular ca. HER+, ER+. I went through chemo and radiation. Herceptin and anti hormone pills prescribed for 5 years. Go to an oncologist that is well know and get all your records. Take charge. This is your life.

CypressCynthia

Hi Eileen. My name is
Hi Eileen. My name is Eileen too, so I had to stop and write you a minute. I don't have much to say that the others haven't already so eloquently described, but I wanted to let you know that, 24 years ago, I had Stage 3A (large tumor, 4 nodes) and it was also ER and Prog +. I had "chemo light" at the time (CMF) and I'm not sure that they use it anymore? I also had radiation and tamoxifen. I had a metastasis after 22 years, but I'm still working and fighting!

If I had it to do over again, I am not sure if I would do the chemo part. The radiation and tamoxifen may be what hits our type of cancer the best, but I'm no expert. And probably I would do the same over again because I was wanting to fight with the full arsenal of weapons??? I'm no help at all ;-)

iluvmykids

deeb111 said:

hello hope this helps
Im not telling you what to do but iwas diagnosed with IDC same thing low grade no lymph involved all of my docs said just radiation they have whats called breast conferance once week and all involved go bs ps mo ro nurses so they all stay on same page they said they would only do chemo if it was found in lymphnodes cause you dont want overkill now IM 47

They do the same thing here.
They have the conference once a week and discuss "smith" so to speak. I guess I need to ask the consensus, b/c the surgeon said he thought chemo was overkill. I got the test ordered because as one wonderful lady said, having as much information as possible, helps us all make the right decision or the one we are most comfortable with.

Thanks!

iluvmykids

CypressCynthia said:

Hi Eileen. My name is
Hi Eileen. My name is Eileen too, so I had to stop and write you a minute. I don't have much to say that the others haven't already so eloquently described, but I wanted to let you know that, 24 years ago, I had Stage 3A (large tumor, 4 nodes) and it was also ER and Prog +. I had "chemo light" at the time (CMF) and I'm not sure that they use it anymore? I also had radiation and tamoxifen. I had a metastasis after 22 years, but I'm still working and fighting!

If I had it to do over again, I am not sure if I would do the chemo part. The radiation and tamoxifen may be what hits our type of cancer the best, but I'm no expert. And probably I would do the same over again because I was wanting to fight with the full arsenal of weapons??? I'm no help at all ;-)

You inspire me!
Keep up the fight, I know we can beat this as long as we keep your fighting spirit.

You sound like me too! Hit with everything or do what only seems necessary right now. The oncologist did not suggest anything other than tamoxifen after radiation and basically left the decision for chemo up to me, which is why I did the Oncotype DX test. It still may come back in a range that I will still have to decide, but I am hoping it will be more of a yes or no answer. Either way it will be more information than I have today and the more information we have, hopefully the better decisions we can make.

Thank you Eileen, take care of yourself and keep fighting!

I will keep you in my prayers.

Eileen

mollieb

I thought insurance was covering Oncotype DX these days . . .
I had Oncotype DX in 2004 when it was brand new and my insurer (Blue Cross/Blue Shield of Ill.) denied it, but the company that owns the test was working very hard to get it covered and they didn't charge me. They had a program that would assist if your insurer didn't cover it -- just fill out a form -- only I was so scattered at that time I never filled out the form and they stopped billing me anyway. They were great to work with on the phone. I would call and see if they can help; it's in Oncotype's interest to have insurers pay for this.

As for the test itself, I am so glad I had it. My chance of recurrence, with five years of Tamoxifen, was 4%. I was able to avoid chemo, which is a good thing, because my new tumor (not a recurrence of the old one) definitely required chemo and there is only so much Adriamycin they will give you in a lifetime. It's nice I was able to avoid it when I didn't need it so there was no question about using it when I did.