Oncotype number and decision regarding chemotherapy

cookiegal

CMF has a lower risk of heart damage and leukemia.

I think light is the wrong way to put it.

If you have people who are on the bubble, meaning it is close to a coin flip whether to give them chemo at all, it makes sense to give on with a lower risk of potentially serious side effects.

It is an older chemo and there is a slight statistical benefit to the newer ones, but it is a reasonable trade-off.

oneday

Raindew,

I'm glad to hear that you have decided to get the mammaprint test to help with your decision.

I wanted to say, if you decide to do the chemo, most people don't have very bad reactions or serious side effects. I'm 6 months from my last chemo infusion, and physically, I feel exactly the same as I did before I did chemo. The only differences are that my hair is only 2 inches long at the moment and feels awkward. Also, I did ovarian suppression with zoladex during chemo, last shot almost 6 months ago, and my cycles have not returned. I am 42 and have been on tamoxifen for almost 4 months. I don't know if they will return or not.

I'm also going to add the reasoning behind my decision to do chemo, since
reading how others made their decision helped me. 

My oncotype score was 13. I probably did chemo for about 3% risk reduction. (I would have done chemo for 1% since I have a 5 year old son.)

I considered whether the chemo would be doing me more harm than good. There are plenty of studies showing that even women with early stage ER positive breast cancer benefit from chemo, especially premenopausal ones. These studies taken together seemed far more reliable to me than the studies behind the oncotype dx. Then if you do chemo there is the risk of secondary cancers, but younger healthy patients have lower risk of secondary cancers and it's probably even lower for ones without any family history of any cancer. There is the chance of getting an infection or something during the week when blood counts are low. But my chances of dying of breast cancer are just so much higher than dying of any of those other things. 

I also believe that even with node negative disease there are/were probably plenty of breast cancer cells circulating through my system. I'm not comfortable with that and I'm guessing that due to my lower systemic tumor burden (early stage node negative) chemo has a chance of successful tumor kill. Quite a lot of speculation on my part there.

Like you, I decided that I would not stake my life on the oncotype score. I'm not convinced that the research included enough premenopausal women, let alone postpartum women (<5 years since last birth) and I'm pretty sure it didn't include multifocal breast cancer at all. Like some have already mentioned, the oncotype score gives a good averaged out probability of recurrence, but in the end it comes down to either you get mets or you don't.

I visualized a situation where there were 100 women with breast cancer and 9 of them were asked to step out of the group because they have metastasis. Of those 9, three who did chemo get to turn around and walk back to their families. Granted not all who did chemo will get to go back to their families.

Six months after chemo, I do not in any way regret my decision. It's been very easy to move forward physically from breast cancer, but psychologically has been so much more difficult, and I think I would be more scared right now if I had not done chemo. Easy to say in retrospect, but if I knew back when I was making my chemo decision that I'd be sitting here 6 months post chemo feeling completely normal and a bit more protected against recurrence, I wouldn't have thought twice about doing chemo. 

Good luck with your decision. 

EDIT: Just wanted to provide an update in case anyone is still reading this thread. My periods did return exactly one year after my last period and 10 months after my last chemo infusion. I have been on tamoxifen for 9.5 months now and the hot flashes have gone, except for a few days each months just before my periods and on the first day of, I get feelings of 'warmth', which I am quite certain are very mild hot flushes. Also, this spring my hayfever has been significantly worse than before and I believe this could be due to having done chemo, although the pollen in my area is apparently extreme this season, so I don't know. Stay strong lovely ladies.

RainDew

Thank you Oneday - this is a very thoughtful and very helpful note. I appreciate your taking the time to walk me through your thinking.

I think my MO now thinks I may be nuts, but I am also leaning towards just doing it...it's only 3 months v the rest of my (hopefully long) life.

I have another few weeks to wait for Mammaprint. Perhaps I will feel differently if that comes back low risk (implies less than 10% chance of recurrence with NO treatment, including tamox, and was designed with pre-menopausal women in mind)

Again, thanks for your candid thoughts

Rain

hmurph

Raindew, I was curious to find out which way you decided to go?  I am 40 years old, premenopausal, Stage1, Grade 3 with ER+PR+ and Her2-.  My oncotype came back a 13, but I had been led all along to believe I would need chemo because of my age and the grade of the cancer.  I'm waiting now for another opinion because I had one doctor at our local hospital tell me I should do everything I can to be cured and that includes chemo but another at the same hospital say I don't need it.  I'm being sent to a larger hospital in Baltimore for another opinion.  Did you get low or high results from Mammaprint? 

RainDew

hi hmurph,

I decided to do it. Mammaprint came back high risk (apparently there is sometimes discordance in the results of these two genomic tests...you can kind of reconcile it by saying that 29% Mammaprint recurrence risk is (a) a single number for all high risk tests rather than linear and (b) before any tx, and I am highly er+, so tami will bring closer to ODx's 9%)

Like oneday, I am doing TCx4, and have found it relatively manageable. I am halfway done now, and looking forward to being finished end September.

It was a difficult decision, but ultimately I was a lot more scared of the cancer than I was of the chemo. And I am certain that for me this is the right call - the science of trying to understand who can skip it is new, and it might be that one day I will look back and think I poisoned myself for no reason. But that is (for me) better than the alternative...

Let us know where you land. 

Rain

oneday

Hi hmurph,

Sorry to hear about what you've been through with the Oncologists. 

I don't know if I have anything new to add to this discussion. But I would like to say that (assuming the oncotype dx score is reliable), a score of 13 as you already know, means that about 1 in 10 women with this score will progress to metastatic. Your averaged out odds are currently 1 in 10. 

If the doctors decide to recommend no chemo to everyone with a score of 13, they choose to save 9 women from unnecessary chemo and sacrifice the tenth woman to metastatic breast cancer. The way I see it, the doctors who aren't comfortable with that are going to try to guess who that one woman is and recommend chemo. (Maybe they're willing to accept a few more women doing chemo unnecessarily if it means a chance of saving that one.) In trying to guess who that one woman might be, I think they're going to look at traditional prognostic indicators. Not node neg, because all who have oncotype are node neg. So it would be tumour size, grade and age. In that case, with your age and grade it's not surprising that chemo has been suggested by one Onc. 

Personally, if I were in your situation, I think I would ask the Onc who said you don't need chemo why he believes you're not that 1 in 10. Sounds harsh, I know, but I would need to know whether I'm simply being asked to play the odds, or if there were factors in my favour (of not being that 1 in 10). 

The second opinion or third opinion might tell you whether other Oncs have reason to suspect you have a greater than average chance of being that 1 in 10.  And if they do, do they think you'll improve your odds by doing chemo? 

MsPharoah

Hi OneDay,   Interesting POV.  I did want to add that the oncotype test is not just for node negative hormone positive tumors.  Many oncologists test node positive patients too and many come back with low scores.

When I was waiting for my score, I was just as anxious about getting a low score as a high score.  Being told that chemo would be of little benefit to me was just not comforting at all.  My intermediate score got me a recommendation for chemo and although I didn't want to do chemo, at least statistically there was some benefit to the treatment.  I did chemo and no looking back.  

My best to all the ladies who must wait for test results and then make these difficult decisions.

Love, MsP  

 

Milljcra

First of all, I would like to say Thank You to everyone who has shared your stories, concerns, triumphs, fears, etc.  Because of sites like this, and wonderful women such as yourselves, I don't feel so alone.  I am currently struggling with the decision to have chemo (MO recommends it).  I have asked for the Oncotype test so I can have just a little more information before making my decision.  My tumor size was 1.8 and the one positive sentinel node was 0.2.  I am ER+/PR+, HER-.  It seems that every stage has involved so much waiting and, honestly, that has been the hardest part (or maybe it's the "not knowing"???).  Anyway, whatever decision I make, I will stand behind 100% with no regrets and move forward.  Now, I just have to make the decision......

MsPharoah

Milljcra,

     The waiting is so very hard.  It's good that you are getting all the information you need to make this decision and that you are going to have no regrets when it is made.  I hope you find that comforting during this difficult time.

Love, MsP

Srh242

What the oncotype score tries to do is spare the use of chemo on tumors that won't benefit from it. Not all tumors respond to chemo. 

sweeney22

I am coming to this topic late. I feel your pain Milljcra. I was dx a year ago this past august. I had lump and SNB- oncotype came back 18. Ugh! I had no idea what to do. I was IDC 1.7 Stage 1 grade 2 0/4 nodes.  I did not want to do chemo. 18 is on the bottom of the mid-range. My MO wanted me to do it. She said all her mid range people did it. She was so young how many mid-range patients had she had? I was not convinced so I asked for mammoprint. I went home and thought about it and then went ahead a scheduled rads and opted out of chemo. I called the office and cx the mammoprint. I went on with rads and later found out the mammoprint had never been cancelled. When I went to see the MO after rads were done I did not want to know the results of the mammoprint- bc if they came back high I didnt want to know bc I didnt want to feel badly that I didnt do chemo. Anyway she slid the results in when I was not expecting her to- and i almost yelled at her bc she knew I did not want the results. But the mammoprint came back low! Anyway- I made the right choice for me and I know there is know way to really know if the BC will return. I spent alot of time after I finished rads feeling very low and depressed about recurrence. I still get that way sometimes but I am trying to move on with life and not pay attention to the fear. That robs us of living. Best of luck as you go through this journey. Your decisions are your own. Each persons BC story is different and you are doing the best for you. Your choices are not right or wrong they are just your choices based on the information you have.  I can be such a black and white person and w BC there is such a feeling of loss of control. It was hard bc I knew no matter what I chose I really had no idea what would happen in the future. Bottom line is none of us do- no living being knows what tomorrow will bring. It is just with BC we have to face the fact we are not in control - we have no choice- and it is so scary. Best wishes----

jetgal23

I had a lumpectomy in mid-June and my tumor was 1.6 cm, stage 1 but ended up being grade 3! I too am ER+/ PR+ and HER2-. Oncotype score took extra long (2 months!) because the first sample wasn't big enough.  So I tried to be patient and remembered that every day you feel good you need to hang on to.  Finally came back 21 (mid range) so they offered the Mammaprint test which will come back either low or high risk.  More waiting but it was worth it because I was at high risk - and the prognosis is excellent having chemo.  I do believe it...so I'm just now a few days past my 2nd chemo and I remind myself daily that this is a bit of a battle that I have to endure and will get through it.  I made the right decision for myself. 

Milljcra

Sweeney22, you are so right, "no living being knows what tomorrow will bring".  You don't know how badly I needed reminding of that!!  Since my diagnosis, I really do recognize how much I have an issue with control.  Maybe this is what I'm supposed to learn - acceptance. 

Jetgal23, I definitely need to keep in mind to hang on to everyday that I feel good.  As I said in my first post, reading about other people's experiences reminds me that I am not alone.  And, while I wouldn't wish BC on anyone, it is comforting to know that.

Psalm34-4

I have learned a lot reading all your post. I am at the crossroads now trying to decide what to do. My oncotype is 21. I had 2 tumors in same breast, and then path with lumpectomy also showed DCIS.. I don't know if the 2 tumors factors in, but to me it seems I have a lot going on in one breast and concerns me that I need chemo too. I see my MO and RO on 9/22. I am a nurse, and spoke with our Oncology director about my BC, she printed off the NCCN guidelines, which she said is the bible for cancer tx, and it shows mid-ranges get chemo too. Just looking for input, experiences of others, etc as I try to decide. Of course, I don't even know yet what my MO will recommend, but feel like I need to have my mind made up before I see him.. Silly huh?

voraciousreader

The NCCN guidelines (professional version--red logo, NOT PATIENTS' guidelines) are a great starting point! Once you read them, and the footnotes AND the discussion section, paying special attention to the endocrine section that begins on page 100, you will get an idea of all the treatment choices available.  

That said, it won't be known before next year, once the TailorX' s preliminary results are known if the benefits of chemo truly outweigh it's risks for patients like you.  Since you are in the dreaded intermediate range, why not ask your physician who ordered the OncotypeDX test, to also do the Mammaprint test as well. That test will offer additional info about whether or not you would benefit from chemo.

Remember, these genetic tests are simply one tool that should be used in helping make that important decision.

I wish you well!

Psalm34-4

I've already asked about the Mammaprint..apparently it is not utilized at our hospital (talked with my nurse Naviagator), but do plan to ask MO too. I read so many comments by women who did chemo, saying couldn't live with doubt/not doing it... and that is what I am feeling now.. although a week ago I felt good about rads only (with hormone tx). gosh what a rollercoaster.. it seems it will never end!! I am praying for God to give me wisdom and peace with decision... Just wish some answers could be black / white instead of grey! I work full time and part of my concern is how chemo would affect my ability to work. I appreciate your input..truly.

Milljcra

Psalm34-4, I understand completely!! My MO has recommended chemo but RO said I should have Oncotype DX to see what my number is so now I wait.  I felt I was handling the whole diagnosis pretty well until they threw the chemo recommendation into it. Having watched my mom go through chemo is greatly affecting my concerns but my MO ensures that we can manage most symptoms if I choose that route (except hair loss of course).  I also wish that I could have a black and white answer and knew what would be best for me.  I wish you all the best. 

Psalm34-4

Thank you Mill..praying you get a definitive Onco score, preferably a LOW one!! The waiting is torture I think!! I want all my medical team's opinions, but feel strongest about chemo from my MO as he is one that would prescribe it and deals with it most often... Chemo terrifies me too, but reoccurence / metastasis terrifies me more!

keepthefaith

  I sympathize with you all going through the decision making process. I was an onco 21...chose chemo and I have no regrets.  I realize that we all respond differently to treatments, etc. For me, chemo was not a walk in the park, but SE's were manageable and not as bad as I had anticipated. I really had no severe SE's....just several minor ones all at once. I was able to work when I needed to and for the most part felt pretty good, considering. I'm not encouraging anyone to do chemo; just want you to know that (at least short term) SE's can be controlled for the most part. If you chose chemo, make sure you notify your MO at the first sign of SE's, no matter how minor you feel it is. Do what you feel is best for you and your situation. There are so many factors and like many of you said, it's not as black and white as we would like it to be. Good luck! 

MsPharoah

Hi KeepTheFaith!

     So glad to hear that you were able to manage your side effects during chemo and maintain your schedule.  I remember telling my Onc that I wanted to work during chemo and she stated, " I want you to work through chemo too and that's why we are going to manage your side effects."  She then discussed the pre and post chemo protocol medications and what they were designed to do and I went to chemo class to understand what was normal, what was not normal.  I had a few rough days, but I did great and was able to work with manageable problems.  

     Making a decision about chemo is so very difficult.  None of us know how we will handle the treatment and long term side effects.  Love and hugs to all in this difficult stage of treatment.

MsP

Psalm34-4

Keepthefaith & MsP.. THANK YOU  for the words of encouragement and to hear that women have actually been able to work while going thru chemo.. the unknown is SO scary, and unfortunately, I think we hear more of the "bad" stories because that is what friends/ family remember so vividly..

Milljcra

I, too, would like to say a huge thank you for the support and information shared by such wonderful women! Knowing that I may be able to manage the side effects of chemo eases some of my concerns.  I am so grateful for this site and the amazing, strong women who continue to inspire me!

katdw

I, too, have an intermediate onco score of 18.   My BS immediately  said no chemo.  I was taken aback by this pronouncement. He seemed to believe that 18 was a low rather than intermediate score!  Thankfully, I had enrolled in a study which provides the mammaprint test for those with mid range onco scores and the study docs had received my results too.  So,  I am waiting again.  

RainDew

katw - I'm love to know how this works out for you - as said above I had a low ODx and high Mammaprint - curious if that happens to anyone else..

(I did the chemo and it's been fine btw...last one next week)

thinkpink4ever

My oncotype score was 30.  I didn't think twice about chemo.  I've done 2 of 4 treatments thus far and it really hasn't been too bad.

I haven't seen many people with a score as high as mine.  It's not very common, is it?

One love,

tp4ever

Loral

Those of us with ER- seem to have higher Oncotype scores....and I chose not to have Chemo.

SailingWind

I have 100% ER and 99% PR my onco score was 17. So no chemo

katdw

Raindew, I will let you know.  So glad chemo has been doable for you and congrats on being done next week!

thinkpink4ever

Loral, your score was high like mine. 

The first time I was diagnosed, oncotype and BRCA testing was not quite common.  Since I was dignosed a second time, and tested positive for BRCA2, plus had an oncotype score of 30, I wanted to do everything possible to lower my risk of recurrence. 

One love,

tp4ever 

Lorbgoo

thinkpink. My Oncotype score was a 41