OncotypeDX score threw me, I'm scared and confused

SavannahGirl

I had a bilateral mastectomy July 21 with tissue expanders. Stage 1, node negative, Grade 2, ER+,PR+, Her-2 negative. Tumor 1.4cm. In the meantime my surgeon had the oncotype test done and referred me to a wonderful oncologist. She had mentioned Arimidex and I think we both felt that would be the next step. The expanders are uncomfortable but not that bad, I was looking at an exchange surgery sometime in October.

Last Thursday everything changed when I got my oncotype score......24. My oncologist went through the pros and cons of chemo but with a score of 24 I am freaking out....if I were low risk I wouldn't give chemo a second thought, if I were high risk I'd get started on it ASAP. But being exactly in the middle ("Intermediate" they call it) it seems there is very little evidence as to whether or how much chemo would help in preventing recurrence. My doctor went through the pros and cons and basically said she would support my decision as it could go either way.

 I want the best chance possible of living a long and cancer-free life (I'm 55) but I don't know how to assess this situation and make such a huge decision with imperfect and incomplete data. 

 Right now my anxiety level on a scale of 1-10 is at a 12 LOL. Has anyone been through this, or something similar? How did you make your decision?

 Thanks

Kath

hollyann

Hugs Kath......I kinda know what you mean...My onco score was 11..In the grey are......But since my tumor grade is 1 I opted for no chemo......If it were me and htis is just my opinion and my tumor was grade 2, I would do chemo...I wanted to do chemo with my score and grade but my onc and my PCP and Breast Specialist all said No, it would not do me any good but if my grade had been 2 then I could opt for it......This is just my own opinion and I kick myswelf int he butt everytime I think about it cause I asked another oncologist at another hospital and he said more than likely I would have had chemo if for only the reason that I am hihg risk for recurrence because 4 in my immediate family have already had bc (3 are deceased).....It was myself, 2 sisters (one is fine the other is deceased), my mother, who died in 1972, and my grandmother, who died from diabetes complications but also had bc.....I wish you well and much peace in your decision......

HelenaJ

Hi SavannahGirl - errr, horrible isn't it!  There is a thread under Chemotherapy called "New Oncotype DX Roll Call" which lists lots of women's scores and what treatment they chose.  I don't know what decision you should make, that grey area is just a nightmare for decision making.

big hugs

Helena

swimangel72

Hi Kath - I was in the same place as you after my Oncotype score came back as 22. My onc originally planned on just giving me Arimidex even with this "low-intermediate" score........but then he received the results of my FISH test which showed the tumor was Her2+++ so that made the decision to do chemo and Herceptin easier for me.Still - at first - I felt like the rug was pulled out from underneath my feet - I had just gotten over a very bad MRSA staph infection in my stomach - and felt like "what else can go wrong?" Learning I needed chemo was almost as hard as finding out I had BC! The good news -  I completed 4 months of Navelbine (light chemo - didn't cause hair loss or heart problems) and a year of Herceptin in April of '09 without any serious SEs. I'm writing to you to show that even though you're very anxious now - like so many of us - you CAN get through chemo. It's an extremely difficult and personal decision to make - but for me - once I got past the intial shock, I knew it was the best decision I could make to prevent a recurrence. Good luck and let us know what you decide to do!

whippetmom

Someone last year posted a question about a score of "24" and I found it for you....

http://community.breastcancer.org/forum/96/topic/709216?page=2#post_1461771

fortunate1

Kath-

I understand. I spent an awful lot of time in the dreaded gray area.  I was a little older, 61, which gives me better odds according to my onc. My oncotype score was 20.5. It gave me a 13% recurrance possibility (with me taking  Femara). I had figured if I was in the gray area I would have the chemo. Surprise. Onc spoke insistently against chemo, saying that Femara was all I needed. He said the statistics ( oncotype and adjuvant online) showed only a 3 to 4 % help from adding chemo. He termed it - out of 100 women in my position who took chemo, 96 or 97 would not be helped by it. He convinced my statistics knowledgeable husband, and finally me. I found it horribly distressing, and probably would have done the chemo without the shove by my doctor. I'm so sorry you are going through this. 

Could you get your doc to help you think through the decision, not just present it to you? 

Let me know if I can help. 

SavannahGirl

 (((Everybody)))

hollyann, thanks for your insight. Don't kick yourself in the butt, don't look back, with your staging and grading and onco score I think you made the right decision. I hear what you say about family history, I'm #7 in mine....my mom, sister, great aunt, cousin, aunt and another cousin all dealt with this. It boggles my mind that women still go through what we have to go through....my mom dealt with it in 1963 for heaven's sake. 

Helena, thank you for pointing me to that thread, I'll check it out. Yes, that grey area is a nightmare...in a perverse way I'd almost rather have heard "Your oncotype score is 76"....at least I would know what to do.

swimangel, I love your avatar! I know exactly what you mean about having the notion of "chemotherapy" thrown at you. After the pathology report I just assumed I wouldn't need it. I totally agree that the Her "+" would change the picture for me too....your words of encouragement should I end up doing chemo mean a lot. God, what would I do without this board and the women here.

whippetmom, thank you for taking the time to find that thread for me, the more information the better.

fortunate1, I hear you about the percentages, and about having my doctor help me think things through; I'm looking forward to doing that during our next visit; she wants me to have a full body scan which is scheduled for September 4, as a baseline. I've had several spinal surgeries and surgery years ago for endometriosis, and she wants to make sure that down the road some "suspicious looking" shadow or mark is nothing new.

When I first asked her what she would do in my shoes, she pretty much sidestepped the issue and said that everyone is different and has different reasons for the decisions they make. I had told her that I have an autistic son and want very much to be around for as long as possible. The afternoon before, I had been crying and my son crawled into bed next to me and said "I don't know what I would do without you." It broke my heart. Usually I keep a very confident and "we'll get through this of course" attitude, I tell my boys that I am lucky to have some of the best doctors at a great hospital (Yale-New Haven) and that with today's treatments everything will be fine.

Anyway in the exam room that day I couldn't help it.....my eyes filled up and I asked her "How am I supposed to make this decision?" She took my hand and said that she was going to schedule me for a full body scan, do some more bloodwork, and when we meet Sept 11 she will make a recommendation. So that is where things stand, and once again I'm in "waiting" mode which has become a very familiar place since May.

Well I'm just babbling now lol. Thank you so much everybody for taking the time to respond, and encourage. It means the world to me.

Hugs

Kath

concernedsis

Savannahgirl - you already did a double m for a stage 1 tumor - why did you decide to do it? Prevention, right? Thats all chemo is too. If a speck of cancer has traveled - sis' onco said negative tests could just mean it hasnt landed anywhere yet. Chemo is just another tool to reduce your chances of recurrence. See what the onco says and if needed get a second opinion. The oncotest shouldnt be your only reason to do it - some places use it some dont. Whatever you decide is the right thing for you. Good luck

dash

Kath, I had stage 1 and a double mast just so I could avoid rads and chemo. Then my oncotype score came back at a 25. My onc called me a few days before Thanksgiving and urged me to start chemo the day after Thanksgiving. He said, yes it's a grey area but he would want recommend his wife,his daughter do the same. Of course, everyone is different and your onc should have more of an opinion for you. My main factors for chemo other than the oncoscore was my age 40 and menopausal status(premenopausal) and er+/pr+. Good luck with this, it'snot easy. {HUGS}

fortunate1

Kath- Your post brought tears to my eyes. I am so glad your doctor will be doing the further tests and will be helping you with your decision. They have the tests, the knowledge, the experience, even the trained hunches, I expect them to advise me. Even though it will still be hard, your doctor is coming through for you.

Hugs right back to you,

Julie 

HelenaJ

Kath - it sounds like you are in good hands with your Doc/hospital.  Let us know how it all goes after September 11.  hugs.

swimangel72

Kath your son sounds like a sweetheart! I hope all your tests go well and that the time will pass quickly while you wait for results!

SavannahGirl

(((Hugs again, can never give or get too many hugs lol)))

concernedsis, thank you for your insight and for taking the time to post. I am going to stay with that thought....whatever I decide will be the right decision for me.

bayyyy, your decision makes total sense to me and thanks for adding your experience to the mix. Believe me when I tell you, it helps so much.

 (((Julie))) thank you for letting me know my post touched you; at the end of the day it is all about Love, isn't it?

Helena and swimangel, thank you for checking back here and I don't know how to explain this but it makes me feel so less lonely to hear someone say that they are interested in my situation and want to know what I decide and how I'm doing. I'll surely let you know what I decide. I hope everyone is doing well and having a good week. 

 Oh and yes, my son is a sweetheart! His twin brother is too!

Hugs

Kath

fortunate1

Well then, (((((((another hug)))))))).

Daylily

On the issue of Oncotype DX, I'm curious as to what this test is costing you:  my insurance co. will only pay "out of network" rate which is $1,500 below the charged cost... and Genomic Health (the exclusive provider of the patented test) insists that women pay that balance out of pocket.  The test is priced at $3,800-3,900; my insurance co has paid $2290.  Is my insurance co. just out of wack for not contracting with Genomic and paying an agreed-upon negotiated rate, or are other folks paying the extra?  What are others' insurance companies paying?

carollynn79

I was all set for radiation and tamox and then my Onco score came back at 21, after much discussion with my medical onc he asked that I join the tailorx trial, he was very confident that I did NOT need the chemo but after learning more about how these scores work what they mean and how they are trying to "pinpoint" the chemo break I entered the trial and was put into the radiation and tamoxifin arm no chemo, if I had not gone into the trial which decided chemo or no I would have chosen radiation and tamox with no chemo.

fortunate1

My insurance company AETNA, misread their own guidelines and refused me, and refused all appeals from my Onc. Genomic Health has an aid program. They asked for information and tax returns, and waived payment. If you are in the trial, I think you are covered also.

aoandrews43

Daylily,

My insurance (Anthem BC-BS) initially said they'd only cover an amount similar to you (around $2200). However, Genomics appealed for me (they'll do it up to 3 appeals) and Anthem came through with the entire payment. Genomics was able to argue successfully that even though it is out of network, they're the only ones who do it so it should be covered (they also made sure the upfront paperwork got to Anthem). The tricky part was that I didn't know up front whether this would work. 

It is worth calling the Genomics customer service line if your doc wants to order the test and you want to have it. They will let you know their success rate with your insurance company and what that company typically will pay. They also told me about their aid plan. You don't have  to be part of a trial (at least you didn't in March), and they were able to tell me, based on my family income, how much the test would cost me if insurance paid nothing. Their guidelines are very generous, so you can earn quite a bit of money and still get most of the test paid for.

HelenaJ

Kath ((((((hugs))))))

SavannahGirl

  Thanks to everyone for your input and support.

I met with my oncologist yesterday as planned and I've decided to go ahead with the chemotherapy.....four rounds of Cytoxan and Taxotere. I am anxious and concerned but I made the best decision I knew how to make under the circumstances. I think it comes down in some respects to an individual's personality.....I just felt that, even though I know the possible (not even promised) benefit from the chemo is small (3-4%), I would regret not having done everything I possibly could, even with no guarantees. 

 My husband is very supportive of my decision but he admits he would not do it, and I understand that. Given his personality, he could forego the chemo and never give it a second thought. 

 I need to read more from women for whom chemo wasn't an absolute nightmare, because whether it's just coincidence or what, lately I haven't been reading much except horror stories. I remember being so frightened before my mastectomies, and I could have saved myself HUGE anxiety because they weren't anywhere near as bad as I thought they would be. I'm praying that this happens with chemotherapy.

 Thanks for listening everybody.

think_positive

Savannah Girl -

I had an Oncotype score of 24 too and I chose to do chemo.  I had a single mastectomy for grade 3 cancer.  I had 4 rounds of TC, the last one in January.  With the "supporting drugs" they give you, this is doable.  I did not experience nausea, mostly I was very tired.   You'll get through this - just take it easy as much as you can - that can make a big difference.  I want to add that when I told my oncologist that I would be doing the chemo (it was left up to me) she smiled and told me that is what she would have done herself.

You can do this!

bookgirl

My Score was 20, I was more scared of chemo than the cancer! I chose to do Chemo 4xTC which is what my doctor said he would ask his wife to do. I stated in Jan and finished 5 days after my 50th B-day in March. I really was not bad, no nasusa, achey and tired. I traveled with my daughters volleyball team and did not miss a game. The time was actually rather comforting, I knew I was fighting the cancer in every way I could and the support from family and friends was wonderful. The hair loss was no big deal, it's a short period, I now has 3" of very curly hair. You CAN DO IT! Know that prayers are you.

momand2kids

Savannah girl

My score was 27--- gray, gray gray--I had no nodes, clear margins from my lumpectomy, er/pr+, her2---all good stuff.  I knew I would be on a hormonal therapy--- so, one could argue that I could have skipped chemo.  Bottom line, I have two young children, I was 48--- I wanted to do everything, so I chose chemo.  I had 4 treatments over 8 weeks-- A/C, followed up with 6 weeks of radiation.  

 You absolutely can do this--- and live your life.  I worked fulltime through it all--- I took off 2-4 days for each treatment--- worked from home--- then showed up again.  I didn't do much else-it was the dead of winter--- so h picked up alot of the kids' stuff, but it really was for only 8 weeks.  I just rested and took care of myself.

 Just follow ALL of their instructions- take whatever meds they recommend for nausea--- don't try to do everything--this is all about you..... I went to work and went home--- that was about it-- mostly because I was tired and did not want to overdo it or get the flu or something that might delay my treatment--I just wanted it done.  I shaved my head, bought 2 human hair wigs--and no one who did not know what I was going through could tell....

 I finished chemo on 2/27 /09--my hair is a curly 3 inch mop now--- eyebrows left and came back as did my eyelashes.... I pretty much sailed through radiation, although i was very tired by the end.... but my energy came back over time--- 

 they say that it takes a full year from the end of treatment for you to feel completely like yourself.  While I agree- Ican tell you that I am about 90% myself now and it feels great!!!

I made the chemo decision knowing that if I did not, I would never have another good night's sleep.  I sleep like a rock!!!! I know I did what was right for me and I would do it again.  

When you are at your treatment, just think of how many other people arrive in wheelchairs, stretchers-- you are strong, you walk in on your own, walk out on your own-- you won't always feel fabulous, but you will be amazed how in between treatments you start to feel better.... I often felt great in the 3-4 days before treatment.  Your body can help you--just let it do what it is supposed to do...... 

 Congrats for making your decision--- don't look back--- just take care of yourself.  all the best

HelenaJ

Kath,

The decision is made now and you can move on to kicking this BC's butt!!!  Stand firm in your convictions and I hope the treatment is kind to you.  Take care.

big hugs

Helena

cabmom

Does anyone have an opinion on chemo based on the oncotype score of 19? 

southerngal47

When I read what you decided about chemo and how your husband felt, I thought I had written it.  I was in the same shoes and chose to do chemo also. My husband said the same thing. I am a worrier and knew I would never be at peace unless I did it. I was afraid if I didn't have chemo and the cancer came back I would always think it was because I didn't have chemo and if it killed one cancer cell then it was worth it.  I think you have made the right decision.  I have to tell you it wasn't that bad going through treatment.  I felt bad about 2 days after my first treatment and with every treatment I could add a couple of days of just feeling yucky.  I was just tired and had a little nausea.  The worst part is the hair loss which I know sounds so vain when you are fighting for your life but it is the hardest part.  It has been over a year since my treatment, my hair is touching the tops of my shoulders, I feel better than ever and you will too.  It's just a few months of not feeling so great for the peace of mind that you did everything possible you could do to battle this.  Good luck.

MBCR

cabmom: I was also stage 2 w/ no lymph nodes,estr/prog positive & HER neg. My oncotype was lower (14). My onc told me I really didn't need chemo, unless I really wanted it, but statistically having chemo w/ my oncotype # & the possibility of reoccurrence was only 1%, so I did not have chemo. Serach online about the TailorX study. There is alot of info about the oncotype #s, rads & chemo. I went to Memorial Sloan Kettering in NYC. My onc offered the study to me before I got the results of my oncotype, but after reading about it & then getting the results of my oncotype I decided not to. I just had radiation treatments & now I'm on Tamoxifen. I will be having my 6 month follow up next month.

Abbey11

Cabmom,

I too, had on oncotype score of 19 in one breast and a score of 14 in the other.  I spoke with three oncologists about this and they all said that they'd give me chemo if I wanted it, but couldn't recommend it strongly with those scores.  They said the the risks of chemo balanced out the benefits.  I didn't do the chemo and just started taking tamoxifen.  I've been on it since January and had very few side effects.  Not doing chemo scares me, though.  Almost every other breast cancer survivor I know has done chemo - I just hope I made the right decision!

If you want the decision to be made for you, you could enroll in the TailorX study.  It's a clinical trial that randomizes women with oncotype scores between 11 and 25 to either chemo and tamoxifen or just tamoxifen.  It's a national trial and your oncologist should have lots of information about it.

 Good luck with your decision!

cabmom

Thanks to all for the very honest answers and thought I had made my decision until meeting with the new radiologist oncolgist and surgeon when I had to come back after the summer but now.....the surgeon has suggested doing the BRCA test, which I agreed to and it should be back in 7 to 10 days and then also a review of the right breast because the MRI revealed something the 1st time I did it but then they said it okay to me and my husband but on the report stated it as "indeterminable".  The oncologist and surgeon both said that is not an acceptable answer and we need to know if we have bigger problems than we originally thought.  This has been such an emotional roller coaster and it seems that every time I think I have reached a solution, another problem arises.  Thankful for the new docs because I feel it's a new set of eyes to ensure that nothing is missed but it's tough going through all this again for the other breast.  Part of me wants to say, let's just do a double mastectomy and forget it all but another part of me knows that I won't be happy until I know for sure what I'm dealing with. 

Have to be honest, I'm a little scared waiting on the BRCA test results and dreading the 2nd MRI tomorrow morning but at least soon I will have maybe clearer answers than I do at this moment.  I just don't feel that this is ever going to go away and I will be able to live normal again.  It consumes my every thought, day and night and I just want to think about something else......but I'm sure that most of you understand that feeling.  Thanks for all that is reading this and for the advice that's been given.  I sincerely appreciate it......

SavannahGirl

Thanks to everyone for your posts, and especially for the encouraging words I needed to hear this week. Tomorrow is my first treatment so I will take all the positive thoughts with me. Onward!!

Kath

London-Virginia

I don't know if you have looked at

www.cancerfacts.com

but there is excellent info on there, easy to follow and with  a list of studies and so forth quoted on there which will be relevant for you personally (on the basis that you fill out a questionaire).  I have several decisions to make to, and have found this very helpful. 

I am a third of the way through chemo.  It isn't one of life's joyous experiences, but it is doable.  It is a bit difficult to post chemo positive (I use the term relatively loosely) stories here because one doesn't want to belittle the experiences of those having a hard time, and my experiences is that the positive posts do get rather lost in the woodwork.

I don't know your menopausal status etc, but do have a look at the  above named website because there are things there that may well be aposite for your overall knowledge that aren't just cold stats. 

Whatever you decide, very best of wishes to you -