Roll Call! Oncotypedx lower range but still intermediate

Belinda977

Deb, how highly ER/PR positive were you?  I was 99% and my onc said although I had a higher than expected Onc score, the key to my treatment was the Tamoxifen.  He even said more important than chemo.  I was pushing for chemo and he indicated the health risks from chemo where much higher than the benefit I would receive.  It is such a hard decision for sure!

bluepearl

grade 1 doesn't respond to chemo very well anyway. does anyone know about onco score and size of tumor relationship?

ndgrrl

I just tested 18 on my Oncho test and the Oncologist said I was low and didnt need chemo. I had a friend who was told if she tested 18 she would have to have chemo- so its all very confusing.

I see many have talked about the percentage of theri ER and PR.  Where do you get this percentage? Was it on your pathology report or on the Oncho Test. My ON didn't sit down and explain the test- was in a hurry- basically handed me a scrpt to Tamoxifen and told me I didnt need chemo and left. How do I know if my cancer will respond to the Tami? I am ER and PR Positive and Her 2 negative.

Thanks

Obxflygirl1

First, you need another oncologist . (Just my opinion). At the very least he should have explained to you why tamoxifen was appropriate in your case and not chemo. Usually, if you are post menopausal, they don't recommend chemo.

jaine

ndgrrl...  I'm new here, my first night on the site, and I was trying to get more info about Tamoxifen. 

My Onco test came back 17 - my SURGEON told me it was 'low,' and to run the other way if I meet an Oncologist who wants to do Chemo.  He was the BEST surgeon, doctor, I have ever had and I trust him implicitly.  

I did meet with an Oncologist for the first time 2 weeks ago. He was a real salesman - sorry, but that is how he impressed me. I am being completely honest here.  He told me what my surgeon said wasn't true, but that 17 just makes the 'low' end so no, I don't need chemo.  You are one number away from me.  I know there are other factors to consider but still ... this Oncologist told me that the numbers between LOW and INTERMEDIATE are ALWAYS changing as testing and studies are being done.  So in other words, 2 months down the road, either I could be intermediate, or you could be low.  

I knew even before my test results came back that I was not going to do chemotheraphy.  I had made up my mind that it was best for me.  

Now my issue is with horrid side effects from 2 weeks of Tamoxifen which I am finding out as I do my research is not only a carcinogen, illegal in Australia (Tamoxifen - they won't prescribe it there), but some are saying and I need to get this clarified that it is a type of chemo drug.  ???  My onocologist never ever referred to this as a chemo drug.  Anyway .... you must make the decision that is best for you .... one that you can live with, live with happily and contented, and yet not interfere with the quality of your life.  

MsPharoah

Ndgrrl, it's so sad that your oncologist rushed you. Shame on him/her. Your percent of er and pr positivity will be on your oncotype report. Make sure that you acquire and keep all your test results...biopsy, scans, blood work, etc. You can call your onc office and ask for copies. Your recurrence score of 18 is the lowest in the intermediate range, so it is not surprising that some oncs recommend chemo and some don't. Most oncs take the age of the patient and node status into consideration. Ask your doctor why chemo is not recommended for you and what would change his mind. That might help you understand. As far as tamoxifen benefit, the oncotype recurrence score you receive assumes that you will be taking tamoxifen or other anti hormonal. You may want to inquire how much higher your recurrence risk would be without it. The higher your er/pr positivity is, the more benefit you get.



Good luck and hugs

Sandra

ndgrrl

Hi, thank you all for the reponses. I am sitting her still confused but need to learn to trust and hope he knows what he is talking about . He comes highly recommended. but hmmmm...

I look on my my oncho score and then the ER and PR and wonder what it all means. From what I am getting it appears that my ER number is low so the chance of it helping is above where it should be but not high. I wish he had sat down and talked to me about things.I had to ask him my number- and then when I was back to the clinic as the nurse of my surgeon for a copy of this paper the ON could have given me.

I am 44 so my surgeon was shocked the ON" didnt throw the book at me" and I really didnt want chemo- but I told him if I had to have it I would do it.

The ON told me to take the tamixofen and come back in a month to see his nurse practioner- I think I will bring my paperwork and ask her to explain it to me. I have not started the tamixofen yet as I have been scared to do it and still recovering from Rads. I finished internal rads a week ago today.

Obxflygirl. Believe me I have thought of chaning ON. Problem is there are 3 where I go and one is hard to understand and the other one my cousin who works at the cancer center for 22 yrs says she would not send her dog to him. hmmm...

Jaine thank you for the information on your oncho test being a 17 and what your doctors said. I hope you can find what you need on this sight on Tamoxifen.

MsPharoah- My ON said that the benifits of receiving chemo did not outweigh the risks and that I was low and didnt need chemo- that was about it. If I read the oncho results right myself- (I was up all night- til 4 am trying to figure otu what parts of the oncho test meant) But it appears I am an 11 percent chance of reaccurance- add the Tam and I am at a 6 percent- add chemo and I would be at a 3 percent. so chemo would be a 3 percent help. But I guess my ON feels that 3 percent is not worth what will happen to me with chemo? 

I was ok with the 18 as a test result til my friend piped in and said I was going to "kill" myself if I didnt have chemo as she was a 22 and receiving it and her ON said anything above that low line had to be treated.

Grrrrr... its just to confusing and I am making myself sick with worry.

Thank you all...

violet_1

Nd,

Shame on your friend for telling you that!

Get a 2nd opinion. ..don't assume chemo is best for you...at all...:)



Violet

violet_1

Jaine,



Wow! Tamoxifen is illegal in Australia? What do they offer instead? In my case it is advised per Guidelines that I only "consider" Tamoxifen.

I am not taking it...;)



I'd recommend for ALL to read Dr. BRAWLEY'S book:

How We Do Harm.

"Dr. Otis Webb Brawley is the chief medical & scientific officer of the American Cancer Society & an oncologist with a dazzling clinical, research, and policy career..."

It is EYE OPENING & very well written. I think it should be required reading for ALL cancer patients, and for the general public alike...;)

"A passionate view of medicine and the politics of illness in America with a deep understanding of health care today, How We Do Harm is a well-reasoned manifesto for change."

The examples of overcare in cancer cases will BLOW YOUR MIND. This man is amazing and compassionate...a wonderful & brilliant soul IMO.

You will learn sooo much from reading this book.

Just WOW! 5 STARS! ...:)



VIOLET

IngridJ

Hi all.

Jaine, Nydgrrl..

Chiming in here...

I am in Australia; just started tamoxifan.. It's very much the norm here..:)) Five years or maybe ten my onc is saying.more important than chemo he says...

Re the Oncotype..My understanding is that the

Tailor X trials will tighten up the oncotype range.. Results are meant to start coming out end of this year I think.. Whether that means the high end of low will become intermediate or vice versa not sure..So hard to know which way to jump.. Been there..

Best of luck... Try for a second oncologist's opinion, and a third if need be... Look further afield perhaps...Question your path; mitotic score and ki67 are the other two things to look at. Lower scores being considered better..And some peeps on this board have done the Mammaprint also; that comes back either high, or low.. No iffy range inbetween.

I had similar score, did do chemo, was my choice, am now 7 weeks out, hoping I did the right thing.. Have some lingering fatigue etc.

It wasn't pleasant but it wasn't the worst. It's making these sort of decisions that makes it the most difficult maddening time of the whole pricess as many here will say..

jaine

Violet and Ingrid ... 

I sincerely apologize - I have literally been studying ALL I can regarding this drug, and one book by Dr. Jane Little that I read, who is against Tamoxifen yet suggests a more natural and holistic route, had mentioned the following:

I stand corrected on my information regarding Australia and Tamoxifen.  According to Dr. Janey Little, a Dr. who lost her mother to live cancer as well from Tamoxifen and believes in going the Holistic route, in her book is quoted as saying: 

‘Various institutions have subsequently recognised this, including Australia’s National Health and Medical Research Council (NHMRC) who stated that no amount of Tamoxifen is safe with regards to its carcinogenic effect.’

So those are her exact words - my bad in stating that it is not prescribed in Oz.  It most certainly is.  

Ingrid ... my Onco score was 17 and I got the score from my surgeon. I had seen an Oncologist and he told me if my score was 18 or lower, I would not benefit from chemo at all.  He did tell me that he would want to see me on Tamoxifen.  I did get a second opinion, and this Oncologist also told me 'Tamoxifen.'  I am not surprised at all that doctors would recommend this since they do have a vested interest in this drug as do many others.  

However, my jaded attitude towards docs  ... does not mean I am completely against this drug.  I am trying to figure out what is best for me just as every single woman who is going through this is.  Some refuse to take it - I have met them, talked to them and listened to their reasons.  Others, such as many on this board and most boards here seem to be pro- Tamoxifen.  

For now I am remaining on it.  But ... I am going to continue my research and figure out in the long run what is best for me.  

Oh, and Violet - THANK YOU SO MUCH for the recommendation of Dr. Brawley's book!  I am going to Amazon right now and purchase it!  I am reading everything 'authorative' I can get my hands on right now.  I welcome the recommendations so I can figure out the pros and cons and which outweighs the other.  

You are all the best!  Thank you for your kindness and encouragment!  xoxoxoxo!  

violet_1

Jaine,

So glad you ordered the book!

And there ARE those of us around who choose NOT to take Tamoxifen...Moi included. ..;)



Violet

Fourminor

Bringing this topic back up.

I just got an oncotype score of 20 and was basically told I could not make a wrong decision either way.

Unfortunately I do not believe this to be true. One can make a wrong decision. There is just no way to ever know.

I really did not want to do chemo and was hoping not to be put squarely on a fence like this.

My thought this morning. The piece of information which is unknowable, which is really the piece you need, is whether any cells got out of your breast and are lurking somewhere in your body. If they were all removed and none exist, than your true recurrence risk is 0 no matter what statistics show.

If a cell did escape somewhere your recurrence risk may be higher than the general statistical population. In that case, the most useful next piece of information that you also cannot know for certain is what treatment exactly is most likely to keep that rogue cell from starting a new colony of friends? My onc gives CMF for in determinant score because it has less of an SE profile, thus lowering the risk-benefit ration, however, what if CMF doesn't really do that much for this particular ER positive cancer?

I def feel that oncologists give more weight to benefit than risk. She told me I would not lose my hair, but when I came back to the board, I see most women did lose some hair, some had bone pain and various other side effects which were completely glossed over. Her final suggestion was that most women who are younger and healthy like me choose to do it.

Well, most women who were young with DCIS like me 5 years ago chose lumpectomy and RT. But what it turns out in hindsight was that if I had done a mastectomy, I would not be here right now. Also five years ago I asked about Tamox (at MSKCC) and was told I didn't need it as Tamox was for survival benefit but the survival for the sub centimeter DCIS I had was pretty much 99%. And in fact, I am still alive. However, it would appear that was also a population based decision that didn't pan out for me.

If I didn't have a beautiful 3 year old and a lovely husband, or maybe if I were 20 years older, this might be easier for me.

None the less, the mitotic count on my grade scale was a 1, so even if cells were mod diff, they weren't dividing very quickly, so how good would chemo work? SN was clean, no LVI, clean margins. What's the chance one of those breast cells decided to take a walk? How about when they harpooned it for biopsy purposes?

No answer. THIS SUCKS.

NisaVilla

DCIS is 100% curable by surgery with good margins and very soon it wont be classified as cancer anymore. Invasive cancer is the concern with potential to spread. You don't mention the size of your ILC tumor and if compromised lymph nodes. Even assuming that ILC tumor was small and no lymph nodes involved, at your age I would take chemo. I think you are asking for opinions on what to do given the oncotype score. Mine is your darling kid needs you cancer free for a long time, and you will deal with SEs like the rest of us did. Sounds like you have a support network to help you through chemo, and we are all here as well. Of course, you are the one making the final decision. I'm talking to you as if you were my sister. Hugs, Nis

Manu14

I can see why you're agonizing about it Fourminor. I'm older than you (my kids are grown); but my cancer profile is similar. I don't know the size of your tumor but mine was 1.1 cm; clean margins; no LVI; no micromets or isolated tumor cells; mitotic count of 1; ER+ 100%; an oncotype score of 18 which is the dividing line between low and intermediate. While I was waiting for the oncotype score to come back, I played some mindgames with myself. I had decided that I had a comfort level of the score being up to 21 and still not do chemo- that a score of 22-26 I would give chemo serious consideration.

You don't say what it is but I would think that the size of your tumor and how strongly ER+ you are might sway your decision too. I'm assuming you have no positive lymph nodes. Any chance you could have the mammoprint test done also which gives only high or low results? I agree with you that oncologists tend to focus on the % points of potential improved outcomes and minimize pissible long-term side-effects. That's what really stinks about all this. There is so much gray area where there is no one absolute correct decision. Keep in mind that chemo does not guarantee absence of recurrance either. You have to make a decision that feels right. to you. Getting a second opinion is always a pissibility too.

PoohBear-61

Hi Fourminor

My score was 18 .

But even before ordering the test my MO recommended these 2 options and said that they had the SAME reoccurrence rates

chemo + tamox      or    Zoladex + tamox

and my Oncologist told me that both gave the same results for my type of cancer . If you read about the ZEBRA trial it will confirm this .    http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=4&L3=5&L4=0&PID=&sid=130&cid=421

Not sure if the link will work but the title of the article  is Two New Studies May Change Treatment Options For Premenopausal Women
you can maybe type ZEBRA into the search field.( its a great article by Susan Love )........you can also google ZEBRA trial .

Zoladex is ovarian suppression with monthly  ( or quarterly) injection for 2 to 3 years ...it shuts your ovaries down .....so you enter menopause . My MO said that the main benefit from chemo for us ER positive sisters was that it put you into menopause.

I am 47 so figured I'd enter menopause shortly anyway .......

When my MO finally received my oncotype dx score of 18 he said no chemo .....the side effects outway the 3 % benefit.

I felt the zoladex option as opposed to "tamox only" gave me the peace of mind that I was doing something extra ( that had the same reoccurrence rates as chemo ). If I couldn't handle the zoladex I could always stop .....and well so far so good .....!!!!

the younger women would usually get their period back after the 2 years .....and their re occurrence rate were not greater than those that chose chemo.

  How old are you ????

 

Fourminor

Hi Pooh-bear

I am 47. I have been reading through the Early stage Premenopausal thread and have been thinking about this. I asked my MO about OS and she said that there may be data at the San Antonio conference and if so we could add it.

Manu--Mine was 1.2 cm with two separate lesions measuring 1mm and 2mm. No LVI and clear SNB. It was 95% ER 5% PR positive.

I just feel like it was more like a "Why not?' kind of a recommendation. Like, you are young, its only chemo lite, so it can't hurt it can only help. On the grade, my tumor had a score of 1 on mitosis per high power field, so I am afraid it may not be that fast of a dividing tumor anyway, so how great is CMF going to be?

As much as I am not thrilled about the hormonal therapy, I recognize it makes sense so I am behind it.

I do feel that we are all at the vanguard of things that are changing so much that we do have to kind of steer our own ships.

hummingbirdlover

Hi Fourminor, I wondered if you'd gotten your score yet. This is so hard, isn't it? My score was 17 and even with my grade 3 status, the MO did not recommend chemo. The risk did not outweigh the reward in his opinion and being hormone receptor positive, he felt tamoxifen was the best treatment plan. That and diet and exercise, basically a healthy lifestyle. Chemo only cut my recurrence rate by 2-4 percent and he didn't think it was worth it and neither did I. I'm young too, 48, I feel good and am going to try to move on and live my life. I have faith. This whole thing just sucks! Considering the recurrence rates are probably lower than our original chances of being dx, that's something right ? I hope you can make a choice that you feel comfortable with. Many blessings coming your way!

Nash54

My onco type was 24, mammaprint came back high (but apparently I was in the middle of of the high score...not sure how that was interpreted). My onco still did not recommend chemo. I am about to turn 60 and post menopausal, I do live a relatively healthy lifestyle and am in good physical shape. My onco said studies were forthcoming that support his decision to recommend AI for my type of BC.

Also, on the mammaprint test, I read where results were something like 90% accurate when it came back low, and only 25% accurate if it came back high. He didn't seem to put too much weight on that test.

Fourminor best of luck with your decision.... that's a hard place to be when your MO is leaving it up to you and not leaning one way or the other. I told my onco if he said it would be beneficial that I'd do chemo and he said he didn't think it would...so that made my decision easier. He's the director of the Breast Center so I felt good with his recommendation.

Professor50

My MO and I had a really good conversation prior to me getting the Oncotype test at all. Her thing was, there is no point in doing this test if you already know for sure that you will either refuse to have chemo or absolutely demand chemo. People go either way. We sat down and talked about the meaning of the scores and where "my" cut off would be. That is, she noted that 18 was bottom of intermediate and that sometimes people would still do chemo with an 18... It would be up to me. She did not sugar coat chemo, that's for sure. But the idea was that even if someone says the cut off is 18 or 25 or whatever, a person can get all the information together and make her own decision. We looked carefully at those curves predicting recurrence over time by oncotype with and without chemo. I decided to get the test because although I couldn't imagine choosing to do chemo, I have an 11 year old and I could not imagine putting him through a recurrence if I could prevent it. In the end it didn't matter. My score was a 5, no rationale for chemo in that case.

MsPharoah

Hello all and I hope you are well and happy. Making a decision about chemo or no chemo is so very hard. I know. First, no one wants to do chemo (or at least I don't think anyone does?) I made my decision because I had a score of 24 and the results showed that chemo would reduce my recurrence rate from 16% to 13%. That was enough for me. I also conferred with my husband and grown children. They were unanimous that they wanted me to reduce my risk as much as possible. Having their input was important to me because I have learned that when someone has cancer, the whole family has cancer. And while it was ultimately my decision, their opinions mattered. To be honest, I wouldn't want my oncologist to recommend chemo lite. That would have made me more unsettled with her guidance. When the decision to do chemo was made, I had no problem pulling out the big guns. Good luck with your decision. You will make the right one, for sure. And don't look back.

Love, MsP

keepthefaith

Interesting thread! I had onco score of 21; recurrence 13% w/tamo, post meno; no LVI, no nodes, etc. When I was first DX'd, I prayed that I would not have to do chemo. When it came down to it, I decided to do it anyway. My MO told me that most of her patients say that they wouldn't want to do it again, but it wasn't as bad as they thought it would be. I can attest to that! Chemo was no walk in the park, but really wasn't too bad for me. I have no regrets; even with a small benefit, I felt as though I needed to do everything I could to kick it's butt to the curb. My MO pretty much left it up to me and suggested the mammaprint, but I didn't want to muddy the water with added information that may confuse me more. No guarantees for any of us and there is no "one size fits all" treatment. We just have to do what we think is best for us. I am anxious to see what the results of the Tailor X trial show. Maybe I am thinking of this wrong, but if one in eight women will be DX'd with BC in their lifetime, that is 12.5%; then, by having chemo, rads and tamo, does that mean that I am now less likely to get BC again, than the "average" person is to get it, ever? Hmmmm. Does that make sense?

Chloesmom

Anxiously waiting for oncotype test results. MO says with ER+ but PR- there is more chance of recurrence than if both were +. Haven't seen that in the boards. Holding my breath waiting to her if chemo is in the cards

Chloesmom

Got my score. 25. Poop. Trying to decide if I toss a coin or what

MsPharoah

Cholesmom, I am also PR+/PR- and had an oncotype DX score of 24. Despite being hugely ER+, the PR- was what I believe made my recurrence score higher. My onc said that she believes that breast cancer types are on a spectrum and ER+/PR- is not as preferable as ER+/PR+. (Sigh) It is really crappy to be in the "middle of the middle". What I did was got my oncs opinion, then consulted with my husband and grown children. All were unanimous to have chemo and I did agree with them. Once the decision was made, it was full steam ahead and we all made it through pretty well with only a few bumps in the road. Chemo is in my rear view mirror now...glad I did it, but glad it's over too. I am also waiting for the results of Tailor X to see where they put the "dividing" line, but no matter what, I won't regret any of my treatment decisions.

Good luck and a big hug to you! These are hard decisions, for sure.

MsP

Chloesmom

thanks MsP. my husband said this is impacting all of us. How true!

MsPharoah

Chloesmom....oh my yes. I felt my husband and grown children should have a say. We were all in it together and it was comforting to me to have them involved and I think it helped them too. Cancer is so horrible and it is the enemy, never forget that when you decide to do something to kill it!

MsP

Manu14

Chloesmom - I'm sorry that your oncotype score didn't make the decision any easier for you. Is it possible to also have a Mammoprint test done by having your doctor send a tissue sample? I think that test looks at a larger number of factors and gives only a "high" or "low" rating for recurrence. It might make you more comfortable with whatever you choose to do.

allicat1214

Thanks for sharing your stories ladies.

I'm in the same boat: Oncotype score 19. No nodes. Tumor just over 1 cm.

My MO was very kind and took his time explaining things to me and said ultimately it is up to me. He said I need to answer two questions:

-Do I want to do chemo?

-What type of chemo:

TC (which he said was brutal, 4x every 3 weeks for 12 weeks) OR

CMF (which he said wasn't as bad 6x every 3 weeks for 18 weeks)

The TC would reduce recurrence by 3%, the CMF by 2.5%.

He said he can't take anything off the table and therefore was "reluctantly recommending chemo".... He said if I chose not to do it he would understand, and agree as long as I did radiation and 10 years of arimidex.

Decisions, decisions....

I know this thread is a little old. Anyone second guess their decision either way? Would you do chemo (or not do chemo) all over again?

Thanks for any insight in advance...

ml143333

Allicat - I can only tell you my experience.  My score came back at 23 which is still in the intermediate range.  My MO and his colleagues gave me all the statistics.  Basically, me doing chemo would further reduce my changes by another 4.5% on top of the Tamoxifen.  I wanted to be able to say that I did everything I could to reduce the chance of distant recurrence, so we went with 8 rounds of CMF every 3 weeks.  I finish on 4/10/2015.

Trust me when I tell you that people will say CMF is chemo light.  You know what?  Chemo is Chemo.  I chose CMF because I still had to work while undergoing chemo and had limited time off available.  It has certainly been doable.  I have my treatment on Fridays and usually take Monday off as well if I have a Neulasta shot.

I have not lost any hair, but it has thinned considerably.  I do battle with weight gain from the steroids and nausea each time after treatment, but like I said it is certainly doable.