Topic: Long term "high oncotype test" survivors

Sep 22, 2013 05:30PM janamarlowe wrote:

Hi S and thank you for your reply. No i totally understand that a high onctpye score and PR+ ER+ and HER- does respond to chemo.  The thing is, I have lung cancer since 2007 (I was operated on then) it is non-smokers cancer and it is very slow growing. Also, it DOES NOT RESPOND TO CHEMO - so Im thinkoing if I take the chemo it will probably kill the only good cells I have in my lungs - and since I am already comprosmised in that area - the of the breast cancer of coming back are about 23% - i just feel there has to be something better out there - I am looking at all the chemos theyre using for invasice ductal cancer and most of them are from the 1940s and 50s. There hust has to be something better.  Anypone have any other ideas?- Jana

Sep 22, 2013 07:06PM janamarlowe wrote:

HI THERE: what is a DX?  All I know is that the tumor was 9 millimeters, it was ER and PR+ and HERP-. It was not found in any of the lymph nodes  and it is midly aggressive. Im sure I didnt ask my doctor enough but I dont know what else I shouldd ask about = please tell me what I should ask him/

thank you, Jana

Jan 10, 2014 05:42PM squidess wrote:

Thought I'd post another update since it's been another year roughly.  I'm still alive, still sucking up oxygen on planet Earth, still speaking my mind. Gave up the motorcycle for the most part and took up sky-diving. Don't think that will last much longer. About to move on to boats and give that a try. And no, it will not be a slow canoe that I buy. Took up yoga this year which is great and supposed to help bone density. Counting on my little fingers the time to (early) retirement which is when life is going to get GOOD and CRAZY FUN!!!!!  In short, life is beeeeyouuuuuteeeefulllll!

It's been almost 7 years for this high Onco DX score mujer. The high score is not a death sentence, it just means that you'll very likely benefit from chemo as compared to someone with a low score.

Really, life is much better since the cancer diagnosis. I'm happier, more content with myself, more willing to speak up and be heard, and I have whittled out of my life those poisonous people that drag you down. What's left is a great deal of peace and happiness and enjoyment of life. If I'd come back as a low score, I probably would have brushed off the whole cancer thing and gone back to my old ways. The high score is a blessing for me - it keeps in mind that I have to focus on what is important in life and seek out what I really want to be doing so that I keep myself in an emotionally good place which in turns leads to a good physical state and better survival.

Life is good. See y'all in another year!!

Jan 10, 2014 07:34PM Loral wrote:

squidess..I also notice those that are PR- have a high Onco DX score....Coincidence, I don't know...

Jan 21, 2014 05:40AM squidess wrote:

Loral, I had a hysterectomy and the ovaries ripped out and I'm doing 10 years of arimidex. The hysterectomy was laparoscopic, and it was a piece of cake. I hope you can find the right hormonal treatment that works for you and you don't have that hip pain. I had a lot of hip pain for years on one side, but in my case it ended up being soft tissue and I fixed that pretty easily once I found the right specialist. Now I have no excuse to skip the gym pfffft. So I bought myself one of those Costco saunas for after the gym. Little Christmas present to myself.

Kam, Loral, I think the trick for us is to get through the first 5 or so years. Looks like maybe the risk is lower after that for those of us with the high oncotype scores. In particular, I've seen some recent studies that indicate that the lower progesterone, while not so great in the first 5 years, might actually be pretty decent for long term survival. It's early still with the studies, but there have been a couple that point to PR+ as less favorable at 10+ years out.

From everything I've been able to sort out spending way too much time reading studies, the high oncotype score predicts risk during the first 5 years and isn't a predictor of long term survival after 5 years. In other words, being at high risk of recurrence in years 0-5 doesn't mean that you still are in years 6+. As we're seeing more studies on long term survival with BC, it looks like having made 5+ years, the risk of recurrence from that point forward may actually be pretty good for us with no/low PR and high oncotype scores.

Why do I read so many studies? Because it annoys my oncologist greatly when I bring them up, and I really think I should get some fun out of a $450 appointment!!!

Jan 21, 2014 06:44AM Loral wrote:

Squidess...thanks, keep reading, I try to to keep my MO busy listening to me at my appointments to.

Jan 21, 2014 06:24PM NancyHB wrote:

It's a challenge to find articles that are uplifting and full of hope, especially in cancer research.  Hopefully there will be more and more of them over the years.  

It has taken me the last year to finally come to terms with the fact that no matter what I read, no matter who I talk with, no matter what goes on around me - I can't predict what my future will be.  Before my dx I assumed I had a long life to live; I never would have guessed I'd have BC.  Even now, I cannot tell you what tomorrow will bring, for any of us.  It is a hard reality to acknowledge, but it is what it is.  I know the risks of forgoing Tamoxifen, and eating ice cream; I acknowledge the benefit of giving up alcohol, and exercising as much as possible.  I do the best I can with the information I have, and will never beat myself up should I have a recurrence.  

My yoga teacher sent us off with this thought:  Worry does not empty tomorrow of its sorrow; it empties today of its strength.  

Please keep sharing your awesome research - I'm always up for a good read on a cold night!

Mar 23, 2014 08:07PM QuinnCat wrote:

Hope - with that score I wonder if you turned out to be Her2+?  

Mar 24, 2014 05:13AM the_roadshow wrote:

Hi H0pe, I finished treatment last September after scoring 44 on the Oncotype DX test. Always nice to hear from others with high scores. Best of luck with your treatment.

Mar 24, 2014 06:53PM h0pe wrote:

Thank you for your encouraging words! :) 

Mar 27, 2014 02:22PM QuinnCat wrote:

hOpe - there's another woman on BCO with a higher score than mine (we go to the same MO) and she is approaching the 5 year mark.  I wish I could find the Japanese study I read, I think it referenced Ki67, not Oncotype score, but Ki67 is a strong component of Oncotype.   Sixteen of the 17 recurrences for those with higher Ki67 scores occurred in year 2 to 5.  One occurred before year 2.  None after year 5.  Not that it is totally comforting before year 5, but I'd like to think that one day I could stop worrying!

Mar 31, 2014 06:35PM LovebeingNana wrote:

I just want to say thank you to IOUgirl and to NancyHB for such positive and thoughtful words. I have been trying to keep my frame of mind in a positive place, recognizing none of us know the future. The fact that this is all so out of our control is so hard but everything in life is. I have to take it one day at a time.. Tomorrow I go to the MO to get my Oncotype score and learn what's next. I am trying to brace myself for that and this thread really helped. Thank you.

Apr 1, 2014 12:49PM squidess wrote:

Kam170,

I believe I know the study you're referring to. I found it very encouraging. The lead author is Nishimura (first name Reike or Reiki I think). The title was something like Factors in Late Recurrence of Breast Cancer and it looked at < 10 years and > 10 years. As I recall, nearly all of the high Ki67 were in the early years, as you mentioned, and the authors stated that there were no recurrences after 10 years with a high Ki67 score.

I really think that this oncotype score is often portrayed a bit inaccurately and that scares women. It tells us who is likely to benefit from chemo (high scores). All it really says is that we are at high risk of recurrence if we do NOT treat with chemo. It doesn't necessarily mean that we are still at a high risk of recurrence if we do chemo.

Peace,

Squidess

Apr 1, 2014 10:06PM NancyHB wrote:

squidess - Oncotype assumes Tamoxifen will be taken for at least 5 years - that's just a given in the Recurrence Score.  Additional benefits are gained by doing chemo.  So, for those of us (and there are many out here) who do chemo but do NOT do Tami or an AI, our chance of recurrence increases.  And unfortunately, my MO believes the Ki67 is far LESS reliable a predictor of future recurrence than the Oncotype - so I don't have that score (Kam knows my ongoing frustration with THAT!)

Apr 2, 2014 12:27PM elimar wrote:

I read thru' this thread and there is a lot of misunderstanding going on. 

The RS score on the Oncotype test is an indicator, a tool to determine whether a person will or will not benefit from chemotherapy.   IF you have a high score, it does not mean that you are more likely to have a recurrence.  It means you are more likely to benefit from chemo.  (Conversely, the low scores get the most benefit from hormonal therapy.) 

If you want to get an idea as far as your risk for recurrence, looking at the factors in your pathology and staging will give you some idea; as will Cancermath (already mentioned); as will Adjuvant Online.