low oncotype score/still do chemo?

wishiwere

When I was reading about the oncotype testing and I think even my contract for the trial states that IF the insurance won't pay, they'll do the appealing.  It mentioned IF we got a bill, to disregard it as they would do the appeals.  ALso I was either told or read that if the insurance continued to say they wouldn't cover it, that Geonome would.  Have you checked their site to see about this?  I remember calling their offices in California, even before I met with my onco the first time.

tiff2008

My oncotype dx was "17" still considered low reoccurence.  I had 2 oncologist recommending chemo.  In my orginal path report it stated, "Intermediate to Poorly Differenciated", and that seemed to be of some concern to my doctors.  At the end of the day it was still my choice.  I chose Chemo!  I'm like others, if I should ever have a reoccurence, I want to know I did everything I possibly could to prevent it!

I'll be starting Chemo 4 dx of A/C on 4/24, then radiation and finally Tomoxifen for 5 years.  I hope and pray that will be the end of this journey!

I struggled at first with the decision for chemo, but when I had my second doctor tell me to do it, that was it for me... I'M DOIN IT!  I know we'll all get through this (one day at a time).

Thank you to all of you for your support.  I couldn't have gotten this far without YOU!

Best of luck with your decisions!

tiff2008

Also, my doctors told me that chemo would give me a benefit of around 2-3%.  Not much, but I'M DOIN IT!

debap

Hi Ladies!  My oncotype score was also low but my doctor recommended chemo b/c of my age (42).  I just finished tx#2 of TC.  It hasn't been that bad.  The hair loss if probably the most annoying so far.  I miss my long hair and it feels like I have a billboard on my forehead (I Have Breast Cancer!).  I feel lucky though to be stage 1 with a low oncotype score.

Debbie

rockwell_girl

I just realized I never posted on this forum what I decided to do.  Both oncologist suggested me to skip chemo even though the second one said I would be a good candidate for the tailorx trail he also said it would at least be a week before I knew which flip of the coin I'd get.  Finally Sunday morning I decided I couldn't handle being in limbo any longer and decided to just skip chemo and start the tamoxifin.  I just have to look forward from here and hope I made the right decision.  I'll be getting another MRI of good breast beginning of August and I think every 6 months after that so if anything would happen hopefully we can catch it early.

otter

Sandy/rockwell_girl,

Good for you!  IIRC, your Oncotype score was only 16.  If mine had been that low, and if my tumor had been only a Grade 1, and if it had been PR+ as well as ER+, I would have skipped chemo for sure.  The absolute benefit of chemo is pretty darn minimal when the risk of recurrence even without chemo is so low.

I believe in making decisions and then not looking back.  (OK, that's what I believe in; it's not necessarily what I'm able to do.)  In your case, you made a decision that was well-supported by the data and by two oncos' recommendations.  If I were you, I would be comfortable with that decision.

Thanks for the update.  Now, get on with your life!  

otter 

Anonymous

Anyone suffering from breast cancer must know that there are many other things they can do to beat the battle of breast cancer. I have had bone cancer and I must tell you natural treatments work more effectively than chemotherapy. The doctors told me they couldn't do anymore for me, so I followed the advice of Phillip Day and I am still here today. There is hope for everyone please just read what I have to say!

I have beaten cancer without so much as a doctors help, and so have eight other I know of whom are willing to prove it. That's right the cure is through natural supplements. Has anyone heard of Phillip Day? I wouldn't have expected you to. The battle in defeating cancer is over, it has been won, already. There are many natural treatments available which can allow one to beat the disease. In fact I am one of them, I beat it when the doctors could do no more. There have been tens of thousands many of which were told hey could do no more they were terminal and through these natural good health ways they are still alive. Phillip Day and his books show that many scientists and researchers have found natural ways to beat cancer itself. The books are a collection of many studies conducted my world renown scientists and doctors. For further information I found this site yesterday- not as well versed as it could be but  good site http://www.cancerfightingstrategies.com/ Further information is on Linus Pauling the multiple Nobel prize winner for science said in 1994 " All people should know that cancer in our society today is basically a fraud." It is known that the reason for cancer is the pollutants and chemicals in our environments foods, shampoos, etc. There are natural ways to cleanse the body of these. Things such as vitamin B17 found to be absent on all cancer sufferers is to be taken- it is found in apricot kernels. What is interesting is that the selling of apricot kernels has been made illegal by the government in the USA. Why may you ask- that's the very question we are all asking, why would they ban apricot kernels- the only true source of B17 vitamins? This one factor amoung others shows that one can rid of cancer, like me who is living three years after I shouldn't be am here to show it is proof it works. I was shown this when my cousin's friend had turned to natural supplements against the doctors wishes and is alive and well today. Phillip Day's books must be bought, you can find them on websites. The real reason why we have chemotherapy is that it is such a successful market for business a multi billion dollar industry in western countries like here in Australia.  Doctors go to school and are taught about the drugs that are available, not natural treatments. I promise with all my heart this is true, I know that you all have a chance- Please find out more about these things it has saved me and can change anyone's lives.

Faithfully Michelle- free of cancer.

P.S Just try it its natural - it wont hurt.

Beesie

To anyone newly diagnosed or currently going through treatment, just my suggestion but I think it's probably best to ignore the above post from MikeyBB (and his 25 other identical posts from this evening).  There are no miracle cancer cures.

Kfalls

I have never written anything on a site like this before, but have spent my whole weekend searching for affirmation that I have made the right decision. I am 49, diagnosed with stage 1, grade3, node negative , ER+ PT+, Her2-breast cancer. I had two lumpectomies (didn't get clean margins the first time) as my tumor was under 1 cm. My Onco DX score was 19 placing the 10 year recurrence rate at 12%. My Oncologist is an amazing person and one of the top in his field. He said that he wouldn't give an opinion about scores in the intermediate risk range as there was no viable data to back it up. He said that chemo had to be my decision. We did however, catch an undertone that he thought it would be good insurance. I have three teenagers and want to be around to see my grand children so after much emotional turmoi, I decided to go with the TC 4 treatments. He then told me that he thought I had made the right decision. I start on Wednesday and am scared to death. Probably just looking for a reaon to back out. Anyone else in this situation?

otter

Wow, Kfalls, that's a tough one.  A small tumor (< 1 cm), both ER+ and PR+, HER2 negative, and an Oncotype score just barely above the "low risk" range (18 being the cutoff).  The only strong indicators for chemo are the grade of your tumor (3 = poorly differentiated) and your age (young).

Did your oncologist tell you how much the chemo would reduce your risk of recurrence?  I had an Oncotype score of 26, which corresponds to a 17% risk of recurrence.  My onco said my relative risk would be decreased by 30% with chemo.  That would bring my absolute risk of recurrence down only 5% (1/3 x 17%), to a risk of 12%. So, I go from an 83% chance of not having a distant recurrence, to an 88% chance, if I have chemo.  Not a big difference.

If the same math is true for you (and I think it would be), your risk drops from 12% to 8% if you get chemo.  So, assuming you continue with radiation and tamoxifen, you have an 88% chance of not having a distant recurrence, even without chemo.  That would improve to 92% if you go through chemo.  Is that enough of an increase to justify the chemo?

This is such a difficult choice.  My onco said that, 6 or 8 years ago, anyone with a tumor that had the characteristics of mine (1.8 cm, grade 2, node-negative) would have been given chemo automatically because of the size of the tumor.  Since then, it has become apparent that many ER+ tumors have a low risk of recurrence, and don't respond all that well to chemo anyway.  So, recently, there has been a trend away from using chemo for Stage I, ER+ HER2 negative tumors.

Obviously Oncotype testing helps sort all this out, but it will be another 5 to 10 years before we know the results of the TAILORx trial.  That study will tell whether women in our situation really needed chemo after all.

BTW, two different oncos said they thought I should get chemo, so I started Taxotere/Cytoxan ( x 4 at 3-wk intervals) 2-1/2 weeks ago.  My tumor was "only" grade 2, but it was PR- which might be less favorable.  I am 56, which, oddly enough, is still considered young enough to justify chemo.

If you start on Wednesday, I will be right there with you.  That's the day of my 2nd TC treatment.  Please let us know what you decide to do.

otter 

Kfalls

My doctor said that they can't quote percentage drop in recurrence yet until the study trials are completed, but it was his gut instinct that I would benefit. I'm going on Wednesday, but just hoping that I am doing the right thing. How was your first treatment? I'm really nervous. Thanks for the info.

Karen

rockwell_girl

Kfalls I just want to wish you good luck.  From the research I did when I thought I was going to do chemo I'm glad to hear your getting T/C.  It sounds like it has less side effects than A/C.  If you made your decision that's great but if still wondering you could ask for a second opinion.  I'm not sure how long it's been since your 1st lumpectomy if you have time for that.  I think I read you always want to start chemo within 12 weeks, preferably 6 weeks.  I do know of one gal that went to my doctors and has been great support for me with the reconstruction part of this whole thing that had a recurrence score of 19 and had two oncologist tell her chemo wasn't needed.  But I'm don't think she was grade 3 & she also had a mastectomy on both sides which might make a difference.  I understand wanting to do all you can.  I even considered chemo with a score of 16 until I had 2 oncologist tell me they didn't think it was necessary.  There's a lot of ladies here that have been through chemo.  If or when you start it Wednesday and I'm sure they'll be great support to you.  Wishing you and everyone the best.

Sandy/Sunshine : )

Kfalls

Thanks - It has been 7 weeks since my first lumpectomy so I guess time if of the essence. I didn't think about a second opinion because I have researched my doctor so thoroughly, but now am wondering. Karen

mpellot2004

kfalls- I am with you my score was 18. I have a 5 and 7 year old, I am scared but I cant live with regret.  If you are interested in starting a new chemo thread let me know.  We can swap stories and give strength to eachother....anyone else?

Kfalls

mpellot - Wow - your situation sounds exactly like me! Especially the part about not being able to live with the regret if it were to reoccur. Are you doing the four rounds of TC? When do you start? I would love to continue to talk to you for support because I am scared to death.

Karen

otter

Kfalls, I think the calculation of the relative benefit from chemo was done with AdjuvantOnline.  That's an on-line calculator some oncos use.  I tried it with my BC data and came up with the same numbers my onco quoted me.

As for how my first TC tx went, it was OK.  My onco said the long-term SE's with TC were not as bad as with AC, but the short-term SE's were worse.  I've never had AC, but I think she might be right.  I was pretty miserable for the first 6 or 7 days after my TC infusion, even with all the other meds they gave me to counteract the effects of the TC.  I also had a hard time with SE's from the Neulasta shot--not the shot itself, but the aches and pains a few days later.

Paradoxically, though, I felt GREAT after about day 8 or 9 post-tx.  Better than ever--healthy, hungry, with plenty of energy.  Then my hair fell out.   

It is SO weird, to feel so fantastic but to look like a Chernobyl victim. Oh well...  As everybody here will tell you, chemo is do-able.  My 2nd tx is the day after tomorrow.

otter 

Kfalls

Otter - Thanks - I know everybody is different, but it just helps hearing another person telling me I will be okay. I have stopped second guessing my decision to do it. My friend gave me a great devotion about indecision and I feel more at peace, just a little scared. I appreciate your prompt response to my wavering sanity.

Karen

beergirl

Good luck to you Wednesday Otter! I will go Wednesday to find out what my oncotype score is and I think to get first infusion of Aredia.

otter

Beergirl,

I forgot that you are still waiting for your Oncotype score.  Remind me, please--you already have a port, right?  Why is that?

And, the Aredia--are you on that bisphosphonate trial that's testing zometa and other bisphosphonates to prevent mets?  Or, did you need Aredia anyway?

This is not chemo brain.    I just haven't been paying attention lately.

otter 

mpellot2004

kfalls- my appoint is today, i have to make my final decision, i will probably start on the 1st or 2nd, im not sure how to start a new thread, so email me when you can mpellot2004@yahoo,com

Kfalls

Hi mpellot - I sent you an e-mail last night (late) hope you got it.

Karen

Anonymous

just a warning - you probably don't want to post your email like that online ...  best to exhange emails via the private message system here.   (for your own privacy and protection from spammers etc)

if you do include your email in a post use something like the following

user at emailaddress dot com

that way it won't be picked up my the spammers and junk mailers as an email address  

beergirl

I got a port at the same time as my mastectomy. My tumor was thought to be 1.6cm (biopsy) or 1.9cm (MRI). My bs said anyone with 1.5cm would need chemo, hence the port was installed. I am not in any trial for Aredia (is that zometa?) but was diagnosed with osteoporosis about 4 years ago. My onc said the Aredia is 10 times more effective for osteoporosis than Actonel, which I was taking. She said insurance companies will only cover it if the patient has a cancer diagnosis.

BTW I am still waiting for oncotype score. Onc said she will call me when she gets it.

Also, looking at my path reports (got some more in) has caused some questions for me. All say I am ER+. One says PR+ and the other says PR-.  One says HER +, the other HER-. How can this be?

beergirl

I got a port at the same time as my mastectomy. My tumor was thought to be 1.6cm (biopsy) or 1.9cm (MRI). My bs said anyone with 1.5cm would need chemo, hence the port was installed. I am not in any trial for Aredia (is that zometa?) but was diagnosed with osteoporosis about 4 years ago. My onc said the Aredia is 10 times more effective for osteoporosis than Actonel, which I was taking. She said insurance companies will only cover it if the patient has a cancer diagnosis.

BTW I am still waiting for oncotype score. Onc said she will call me when she gets it.

Also, looking at my path reports (got some more in) has caused some questions for me. All say I am ER+. One says PR+ and the other says PR-.  One says HER +, the other HER-. How can this be?

beergirl

I got a port at the same time as my mastectomy. My tumor was thought to be 1.6cm (biopsy) or 1.9cm (MRI). My bs said anyone with 1.5cm would need chemo, hence the port was installed. I am not in any trial for Aredia (is that zometa?) but was diagnosed with osteoporosis about 4 years ago. My onc said the Aredia is 10 times more effective for osteoporosis than Actonel, which I was taking. She said insurance companies will only cover it if the patient has a cancer diagnosis.

BTW I am still waiting for oncotype score. Onc said she will call me when she gets it.

Also, looking at my path reports (got some more in) has caused some questions for me. All say I am ER+. One says PR+ and the other says PR-.  One says HER +, the other HER-. How can this be?

Harley44

KFalls & Otter,

My pathology info. wasn't much different than yours... I was .8cm, ER+/PR+, HER2-,  no lymph node involvement, grade 2... and my Oncotype score was 28!!!  WAY TOO HIGH!!!  So, I am really not sure that this is a very accurate test...  I got the chemo because it is the only way I know that I have done ALL I CAN to prevent recurrence. 

Good luck!

beergirl

My tumor was actually .9cm with 0/6 nodes underarm and 0/4 nodes on chest wall. That is why there is some question  now. It seem that I may not need chemo - at least that is what my bs and onc say.

beergirl

Does KI -67 have anything to do with the tumor grade? Onc said it told how fast the abnormal cells were dividing. I find KI 67 on path report but cannot find any results as far as score.

otter

beergirl,

Interpretation of those path tests can be kind of subjective.  It's good that they both say your tumor was ER+.  The Oncotype test will verify the ER and PR status with a different type of assay than the path labs use, and that result will be in the report your doc gets.  I don't know about the HER2, though.  I don't think you can get that specific result from the Oncotype test, even though Genomic Health tests for HER2 as a component of the Oncotype score.

I wonder which of the two different HER2 results your onco thinks is most reliable?  HER2 expression is really important in the treatment planning.

otter 

beergirl

Otter, how did your 2nd tx go?