oncotyping score -what woud you do?

sflow

Same # for me, Michelle. I have kids but am widowed so kind of had to decide myself. Consider your stage, grade, ER/PR status, age, HER2/NEU factor. I decided against it. My diagnosis was Nov 2006. I am stage 1 as well ER/PR + HER/NEU negative and am 57. Only bad factor was it was a grade 3 tumor. I decided against chemo and have never looked back. It is a personal decision. Best of luck in your decision.

choca1711

I had IDC stage 1, grade 2 - er/pr+ no nodes. My oncotype score was 27 - 18% risk of recurrence without chemo. I decided to do the chemo. Haven't regretted that decision to date. I feel that if I am unfortunate enough to have a recurrence somewhere down the road, then at least I know I did everything possible to prevent it from the onset, and would never have to look back and wonder if I should have done the chemo.
Chemo really wasn't as bad as I had imagined it would be.

Harley44

Hi choca,

I was a 28, and 18% recurrence rate, also, as yours was.

I decided to do the chemo, since I have to do everything I can to prevent recurrence, even though I am very scared! I had my 1st treatment Tuesday, 8/7. I guess I am doing ok. I have 3 more to go, and am not looking forward to it, but now that I have committed to a path, I must continue to the end.

It's good to know someone who chose the same as I did, and I know I will get through it somehow... I have been depressed thinking about the inevitable hair loss, my onc used TC, Taxotere and Cytoxan, and I WILL lose my hair at day 15 or so...

Glad to hear that you did well. When did you have chemo? How long has it been?

Thanks
HARLEY

foreverblue

Thank you for your views, it really helps to know that others are facing/have faced the same difficult decisions. I am 41 and what I fear the most is the sudden permanent menopause. I have read of so many problems associated with the SE and I'm afraid that I will feel like an empty shell. Feel as though I will be of no use to any man ever again and that it would be pointless to try and pursue a relationship. I know we all have to face the big M sooner or later - but it would have happened gradually and maybe 10-15 years away (for me). I know I probably sound like a drama queen but I feel that even if I survive that my life is over..... I suppose I want some reassurance that there can be some quality of life after BC. I think what concerns me the most is that my tumour was Grade 3. If it was only a 1 or 2 I'm pretty sure that I would definitely opt out of Chemo.

I have to let my Onc know tomorrow what my decision is. She said that is my deadline as I am now 9 weeks since surgery. I have been putting it off and trying to hold on to my "old" life as long as I could before it is gone forever......

Michelle

jezza

Hi Michelle
I have sent you a private message. Hope you received it.

jezza

kmyers

it is 3 years later. I like you have no kids or spouse. Am 60 years old w new Dx but w high recurrence score. I am curious as to what you did and how it played out

Kathleen Myers

Annabella58

Hi Michelle

First, honey, you are not your womb, nor your ovaries.  And kids can be adopted or home grown, either under your heart, or in it.  Both of my cousins were adopted and they couldn't have been more my aunts' own children....they got two birthdays...one was the actual day, the other was "gotcha" day...the day they came home.  So we always thought they were "picked specially", and they lorded it over us.  So put that thought out of your head.  You can, of course, have a child, if not biologically, then from your heart.  You can surrogate as well if you wish.  There are so many wonderful kids out there that desperately need your love, I feel sure you will find your baby when you are ready.  But first, get mom healthy again!

I had everything out, and since I never met any of it, I do not miss it.  I am not an "empty shell" and never considered that, that way.  My husband says that now I am his love machine, as no worries re: pregnancy, and with new pretty boobs, I am built for pleasure.  (guys do have a different take on all this than we do.)  As Jack Nicholson said in "Somethings' Got to Give" when he worried about pregnancy and she answered "menopause", "Whoopee! Look who's a lucky guy!"  A very different take, they are different beings.

 Please realize your uterus is a muscle, that yes, is capable of holding a child, but also can cause some nasty things to go on.  Same with the ovaries, those little cancer bombs.   I can attest to a perfectly normal way of life after surgical oopharectomy/hysterectomy.  A little dryness, easily fixed.  That said, the way you feel is perfectly normal, and it's good to grieve for that for a little while.  Then it's good to put on big girl panties and realize that of course your life will go right on and no, you will not be less of a woman.  Much, much more of a woman for going thru this and coping with it all.  You will be one he** of a woman.  You will be a Valkyrie. 

Look, the equipment can leave the playground, but the playground is still there.  Any man worth marrying that you meet, will not give a damn.  If he does, he's not worth marrying.  Consider it a good filter for guys. 

You can get reconstructed, and my boob looks better than the original.  The outside is still all me, only the "stuffing" is new.  Again, men will not care at all, and one who does, will either admire you for your strength and what you went thru (a keeper) or if some idiot has an issue, well, that's a discard.

The chemo is do able.  One day at a time, one txtmnt at a time and you will be posting here that you are done! 

I had no SEs. other than heartburn and a crash into a nap the day after.  Never got nausea.  I am 54, was 53 and nowhere near menopause, stil had my period and tons of estrogen.  I thought surgical menopause would be really bad, no such thing.  I had a few warm ups, but really not a big deal.  Hyster sisters is a wonderful site full of great tips on all of this (hystersisters.com)

I had a score of 17, and they still did chemo.  I was unable to have rads, so had that. It is do able.  You will get thru it and you will be just fine.

PM me if I can help you thru this.  QOL is AOK on the other side!!!

xoxox

sj29

It looks like this board started years ago and I was wondering if I could get some more feedback from women who are currently undergoing oncotyping and those who have been living with their chemo/no chemo decisions for years. I am 26 and got dx with stage 1 breast cancer almost 4 weeks ago. I was a candidate for a lumpectomy with rads or mastectomy. I opted for a mastectomy to avoid rads due to unknown long term effects at my age. I am er/pr + and her2-. I find out within the week about my oncotyping result and am so nervous. I will do whatever I can to survive the longest and best life I can, but want to make sure it's the right choice. I also am so young that I think about fertility often with this. I just got married 3 months ago and we don't have children, would love to someday. Can anyone comment at all any fresh thoughts here???

momof3boys

Bump

sflow

Hi--I responded in 2007--whew--I didn't even remember that post.  I just finished up my 5 years of arimidex--I had a 22 onco score and opted not to have chemo.  Still here and NED right now.

Golden01

What is NED?

voraciousreader

No Evidence of Disease... NED

Golden01

 Thanks! I'm learning so many new things!

CHH

Sjensen29: My diagnosis was similar -- but mine came shortly after turning 50. My oncotype was 18 which is borderline low/intermediate. My onco recommended chemo. She said that this was our best chance to be aggressive against recurrence. I was struck by that and went with it. Just finished last month. Radiation should start next week. Good luck with your decision.

momof3boys

My Oncotype score was 16. It was a hard decision, decided to do 4 TC treatments (I'll have my 3rd on Thursday). My score was low, but my tumor was on the larger side, and at 43, I'm considered young for BC. My MO's group take many things into consideration, including the Oncotype score, but she did tell me that her group (10 oncologists) will generally use the score of 11 as a cutoff for younger, otherwise healthy patients.

She left it up to me, but did say, "I can't tell you that you'd be wrong to turn down chemo, but I can't tell you that you'd be right". I wanted to know, for myself, that I did everything I could to prevent a recurrence.

edwards750

My oncotype score was 11 but I am 30 years older than you. Had it come back in the intermediate range I would have opted for chemo. Frankly I would have been scared not to. My results also said that my cancer was non aggressive and the tumor was smaller than earlier thought. All good and a relief. I know nothing is a certainty but a lot of oncologists are using the Oncotype test to determined treatment. They have been overtreating women and needed some other tool to determine treatment esp in cases like mine...I had a micromet in the SN which ordinarily means chemo...in the nodes=chemo or so my BS thought. My oncologist said no she wanted me to have the test. It is pricey but fortunately our insurance paid for it and they also work with you on a payment plan if it doesnt. I am so glad I did. Good luck and let us know. diane  

sj29

So my oncotype came back today at 14. My MO suggestion was to do Tamoxifen for 5 years and did not think chemo was neccessary. My reoccurence rate with doing soley the hormone therapy was 9%. Doing chemotherapy combined would bring it down about 3-5% more. I want to do everything to bring it down to the lowest number without compromising my health. At this point it appears that chemo isn't in my favor. The side effects seem to risky, but I just feel like I want to do everything..I am so conflicted. I have no children and would like to someday. Doing chemo would obviously cause a huge road block in this. Fertility is my main reason for NOT wanting to do chemo..I don't know. I know the numbers are so low and they are in my favor, but it is hard to believe that when I got BC at such a young age and my risk for getting it was like 2%...

 It makes it hard for me see such "low numbers" as good when the numbers for having breast cancer were in my favor already. I don't know. I just keep going back and forth. I know the MO is saying it is safer not to, but how do I be sure? 

weesa

Sometimes this thread makes me cringe a bit. If you do chemo, even with a low oncotype dx score, it gives you some protection if you are unable to take tamoxifen or one of the AI's. You know you can do chemo--just grit your teeth and do it. But look at how many women are unable to tolerate tamoxifen or the AI's. I was one of them--had to keep stopping, then starting, then taking half a dose then finally stoppping altogether before I really wanted to. I was so glad in retrospect I had done dose dense ACT. It wasn't as difficlt for me as the AI's.

Karmil710

Wow, this is a good thread.  Chemo vs no chemo; that's a tough and very personal question.

My oncotype score was a 21, a 13% recurrance rate.  I am in my 40's.  

I got 3 opinions:

Opinion #1:  You had a 4cm tumor. You NEED to do chemo.  Any regimin will work, but do SOMETHING.  

Opinion #2:   You should do chemo, but if you really don't want to you could skip it.  If  you do opt for chemo, choose dose-dense ACT.  You might as well go for the big-guns, if you're going to bother to do it at all.  

Opinion #3:  If you want to do chemo, do T/C.  It's less cardio-toxic than the ACT.  I got the feeling that MO #3 would have happily supported me if I decided not to do chemo at all. 

All 3 opinions recommended Tamoxifen for 5 years afterwards.

I went with opinion #3:  T/C X4.  I felt like it was a good compromise between all 3 MOs, and was something I could live with. 

I just finished my 4th T/C treatment last week.  It was not as bad as I thought it would be. 

Wishing you strength in making your decision.

  

sj29

So i wrote a while back, but want to put this back out there now that I got a second opinion...My stats: 26 years old, IDC, grade 2, NSM mastectomy with immediate implant, 2 negative nodes, clear margins, BRCA 1/2-, oncotype 14 (9% reoccurence with Tamoxifen). I had the same problem with making a surgical decision where my first opinion said no to radiation and to do the mastectomy, and the second said the opposite. Now that I am over with surgery and happy with my more drastic surgical decision, I have to decide about the rest of the course. My first and original MO said last week that based on everything he would just recommend Tamox. He did get into chemo and said he would also do that if I wanted to. He said he would do TCX4, but again said he would feel safe to do just Tamox.I went for a second opinion today and this Dr. was very ADAMANT about doing chemo. He said based on my age alone that he was extremely concerened. He said that oncotyping doesn't look at age (and doesn't even think the study had any 20 year olds in it) and said that based on age he would be much more aggressive.Now I have two conflicting opinions (once again) and do not know what is safer. My biggest concern first is fertility. I am young and newly married no kids. We would like kids someday and I don't know exactly if doing the whole egg harvesting, etc. is right for me. Do I risk doing chemo and hope my function comes back after? The benefit is like a 3-6% difference adding in chemo to my hormone therapy. I am so terrified and do not want to make the wrong decision obviously. I know I have to be the one to live with it etc, but it is just not so cut and dry. Any thoughts?? I would appreciate anything! I need to make my decision by next week.. 

Karmil710

Hi Sjensen29,

You really have a big choice to make here.  Here are my thoughts, for what they are worth...

I think you need a 3rd Dr to run this by.  It could be yet another MO or even your primary care Dr.  PCPs are used to interpreting data from studies that may not pertain directly to you. (eg: no 20-somethings in oncotype study.) & your PCP knows you already.

Also, would your 2nd MO change his decision if  you opted to have further breast surgery to decrese the amt of breast tissue that  you have left?  This would not have an impact on fertility, yet would cut your risk of future BC considerably.  

I hope this helps,

Karmil

momof3boys

Sjensen29: did you discuss the issue of infertility with your MO and voice your concerns? There are some women on this board that have had children after chemo, some, if I remember correctly that "took a break" from Tamoxifin to get pregnant.

There's also the possibility like a previous poster mentioned that you won't tolerate Tamoxifin and then what do you do? That would give me pause...

I'm 43 and they considered me "young" and basically said they recommend chemo, even with my score of 16.

My MO said that her group uses 11 for a cutoff for young, otherwise healthy women when recommending chemo.

Maybe ask your second MO to run it by all of the MO's in his group or a tumor board? I know this is frequently done when a patient is in a "grey area".

farmerjo

Bump!