Failed oncotype - chemo or no chemo?

allmylove · April 2011

Dear all:

I just skimmed through the thread about intermediate oncotype scores. I wanted to post directly in there but I'm hoping I'd get more responses from starting a new topic. I've been pretty much making a lot, if not all of the decisions on treatments for my mom because she doesn't speak English. She's relying on me a lot, which I don't mind but I feel really pressued to make the RIGHT decision, even though honestly nobody knows what exactly is right.

So here's what I'd love some advice on - my mom has IDC, stage 1, tumor size .5cm, grade 3, 0 nodes, ER+/PR+ Her2- (54 yrs old). I've been waiting on the oncotype result to decide whether or not she should get 4 cycles of TC. We've seen 2 oncologists and both of them were 50/50 on chemo. So I was going to make the decision based on oncotype. The problem is that the result came out as something like "failure to perform". Honestly that really pissed me off.. I mean I waited 2 weeks and there's no result.. apparently the test can fail if the tissue sample the lab sent in isn't big enough. The pathology lab said yesterday they'll send in more samples hoping they can redo the test - but it may still come back as failure. I don't know what I should do. Because she's only stage 1, it's ok that she doesn't get chemo, however, her tumor grade is 3 which means most likely her oncotype score won't be low. One of the oncologists thinks that it'll probably be intermediate or very low-high. Which means we still have to decide on our own whether or not she should get chemo. I just think that it's been 5 weeks since her surgery and I'd really like her to start radiation as soon as possible. I don't think waiting 2 weeks for the results is a good idea. She's not even taking any AIs right now.

Does anyone know anything else I can base this decision on? I feel like logically I should tell her not to get chemo because the benefit doesn't necessarily outweighs the risk/suffering. But emotionally I want my mother to live forever and get all the treatments she can, even though it's a very selfish thought to have.

If anyone can chime in on your decisions or any information, I'd really appreciate it

allmylove and best wishes to you all

voraciousreader · April 2011

First off, I'm sorry to hear that your mom joins us. You sound like a lovely daughter. She is very blessed to have you and you are blessed by what a wonderful job she has done by raising you.

A week ago, some one also posted that they had an Oncotype DX failure. I guess, we've become accustomed to the Oncotype DX test, that until recently, many of us never realized that there could be "failures." Hopefully, they will get enough of a sample this time to complete the test.

There are many things to consider. Back in the day, before the Oncotype DX test, women had to make choices about chemo without this important information. What did they do? I think at the end of the day, you have to put your fate in the hands of the oncologist whom you trust the most and follow their recommendation. Since both oncologists are on the fence...why not consider a third opinion? Have you gone to a comprehensive cancer center? A teaching hospital? I received three opinions. Thankfully, they were all in agreement.

Your mother also has to decide how much risk she wishes to take. Like you said, it's grade 3, but small. Some women will want to do chemo despite the risks, while others, may not. Also, her age is important and her health status.

While you're waiting for the results, why not look at the 2011 NCCN guidelines for some direction.

Good luck and my prayers and thoughts are with both of you, and of course, all my breast cancer sisters.

Sorry, I can't be of more help.

poptart · April 2011

I've been pretty much making a lot, if not all of the decisions on treatments for my mom because she doesn't speak English.

Would it be possible to translate the information to your mother or find someone who can act as a translator? Is there any other reason aside from language that your mother cannot understand information about her diagnosis and options? That is what I would do, find a way to communicate the information to your mother, including what the oncologists say about her stage, risks, benefits, etc. then let her decide. 54 is pretty young, I would think she should be able to make a decision. Just my opinion, but she certainly has a right to have all relevant medical information communicated to her in a language that she understands.

pj12 · April 2011

What % ER+ is your mother? The higher the better for how well hormonal therapy will work for her so that might help you in the decision process. Did the surgeon say the margins were good? That is important too. Her tumor was quite small so that is good. How is your mother's general health and her heart? Chemo can be hard on people with other health issues. There is an "ideal" time window in which to start radiation if you are not doing chemo so you might ask the radiation onc what they think.

Your mother is fortunate to have you as her advocate. Making these decisions for ourselves is difficult, it is so much harder making them for a loved one. Good luck.

allmylove · April 2011

poptart - I've been translating everything multiple times to my mom but honestly she only understood half of it and my mom sort of has a happy-go-lucky personality. So instead of making a decision she's kind of just like "I'll do whatever everyone else thinks is best." I've yelled at her for it and told her she has to decide for herself because it's too big of a responsibility on me.. but since I am home and I am much more educated than her, I feel like I really should help her to make the decision. I've done cancer research for 3 years as an undergraduate student at Hopkins so I think because of all that she's relying on me a lot. Another thing is that even though the surgeon and radiation oncologist both only speak English, the two oncologists I found speak her language. So yea even though the oncologists talked to her personally she's still not really deciding on her own.. ugh..

pj123 - she's 100% ER and PR positive - so yea that's good news. I think she's in good health and she's relatively young so I do think that chemo won't do her in. However, you're right in saying that since it's been 5 weeks I do want her to just make a decision and stick with it. She has to start treatment soon and personally I think the sooner the better. I just called the oncologist and they're sending another tissue sample in for oncotype.. but that's going to take another 2 weeks. I think waiting 2 more weeks is kind of ridiculous.. We should just decide on it and move on.

Thanks for all the warm comments everyone, please keep them coming. What were your oncotype scores and what did you decide on doing?

dlb823 · April 2011

Sorry if I missed it above, but did you mention if your Mom had a lumpectomy or a mastectomy? Also, do you have a copy of her pathology report? If so, what's the Ki-67 proliferation factor? That's one of the prognosticators they relied on prior to the Oncotype-DX -- not that it's a perfect one, but something under 20% is better re. recurrence risk than something a lot higher.

I think one of the questions a lot of us ask ourselves about chemo -- especially if it's left up to us -- is, if I don't do chemo and it ever comes back, how would I feel? Would I kick myself for not having done more?

The other random thought I have for you is, there are a wide range of chemos. CMF, for example, is sometimes referred to as a lighter chemo, and might be something to ask her onc about.

Sorry you're going through this. Waiting to find out if you or someone you love needs chemo or not has got to be one of the worst times ever. (((Hugs))) Deanna

mdg · April 2011

I am sorry your mom has to go through this....it stinks! As far as chemo, I had to make a decision myself. My stats are below and my oncotype was 17 which is the highest score in the low group. The problem is at a score of 18 or higher my one onc said chemo would be my decision. At 17 she said no chemo. I was concerned because on my pathology report it indicated I had angiolymphatic invasion in my tumor...meaning the cancer had an opportunity to spread by blood but we don't know if it did/didn't. I too am stage 1 but I am Grade 2 which is intermediate. So I saw another med onc. She reviewed everything and presented my case at tumor board and 3 of the 4 med onc's suggested chemo because of intermediate grade, my age (45), angiolymphatic invasion and because I am in excellent health. I had to decide..I chose chemo. I am on taxotere and cytoxan...4 cycles. I am half way done and have my 3rd treatment next Wednesday. It has been easier than I thought it would be (not that it is fun at all). I guess I would also completely review the pathology report and see if there is anything else in ther that gives you any reason to do/not do chemo. The angiolymphatic invasion made me decide. My doc's never talked about the angiolymphatic invasion piece much until I personally read the entire pathology report and brought it up and asked a ton of questions. Make sure you understand the entire pathology report. Best of luck in your decision.

allmylove · April 2011

thanks for the comments again

there was no ki67 score on the pathology report.. nor biopsy report and i pretty much have both memorized

is there a catagory that mentions angiolymphatic invasion? as in do they mention it and then write yes or no or is it only mentioned on the report if they find invasion?

the only "bad" thing about her report is the tumor grade, which is 3 (8/9). that would be the only reason why they'd put her on chemo. the chemo would be TCx4 like i mentioned earlier.

my dilemma is that if i sway her into getting it, i think the biggest reason is because i want her to do everything she can and live longer. that's very selfish and i won't be suffering from the side effects, she will. but if i tell her not to get chemo, what if it comes back? I don't know if i can live with that either.. i think i'm just stuck

BioAdoptMom3 · April 2011

Your mom's and my case is similar so I can only comment on my doctor's decision, but unfortunately cannot advise you about what to do. My OT just came back on Friday. It was in the intermediate range and my MO is recommending chemo for me (T/C). The reason he recommends this for me even though I am intermediate is because I am also pre-menopausal (52) and grade 3. I am not sure of your mom's menopausal status. My tumor was also 1.2 cm. and that probably makes a difference because your mom's was smaller. Very often oncologists do not recommend chemo for stage 1 under 1 cm., or so I hear. Good luck with your decision and sorry I couldn't be more helpful.

Nancy

Char2010 · April 2011

allmylove - My BC was .9cm, clean nodes, high ER+, grade 1. Every doctor (surgeon, radialogist, oncologist) told me my OT will be low. Oncologist said no chemo. Four days later the OT results came in, with a score of 20. Now the same oncologist said it is my decision. I think because it was grade 1 they all assumed the OT will be low. I ended-up doing four rounds of TC. Tough decision for you and your mom.

NormaJean65 · April 2011

I had the Oncotype DX since I was ER+, PR-, HERS2+ after my mastectomy & before starting chemo. My Br CA was a stage I, but Grade 3. (Not as listed below post.) The Oncotype came back with a 100% reoccurance. I was devastated to say the least with no history of CA. I now have completed my 6 tx of Taxotere, Carboplatin and continuing to finish my Herceptin plus started the Arimadex after my combos were done and on the Herceptin only. A couple of weeks ago my CA 27.29 was 40 when it had been only 31 prior to surgery & chemo. I don't know what to think and that Oncotype score is haunting me. Getting very little (next to none) explaination from Onco Dr. Truly, I feel like giving up & accepting whatever my fate is to be. My best to you all & wish for you God's blessings.

voraciousreader · April 2011

NormaJean65... Don't let that Oncotype Score haunt you! For all of us, whether our scores are high or low there is always the chance of recurrence. Even if you have the lowest of low score, if you do get a recurrence then what matter is it that you had a low number? Remember, the score is also used to determine if chemo would be of benefit. The test was designed to determine who should receive chemo and who shouldn't. For years, doctors knew that many women were being overtreated with chemo. The Oncotype DX test is merely one more tool to be used in making the decision whether or not chemo would be beneficial.

Also, there is a lot of controversy about using those cancer blood test markers for Stage 1.

You've done all you can. Wear your seat belt and get on with enjoying life!

Thoughts and prayers to you!

allmylove · April 2011

NormaJean65: I knew the test goes up to 100% but I didn't think people actually get that score.. and here I see people feeling crappy over a 20 something score..

Like the previous person said, try not to let that score run your life. Like the previous person said, even people with low scores can still have recurrances. Nothing is a gurantee and the test is really a decision factor for chemo treatment. So think about the fact that you've done all that you can do fight this disease and move on to happier thoughts like the fact that it's stage 1, your nodes are clean. I don't think you should "give up" but knowing that you've done everything you can isn't exactly a bad thought.and CA27.29 does fluctuate a little bit so don't let that scare you either. Perhaps you should consider getting a second opinion or just switching to a different oncologist that makes you feel better..

best wishes,

allmylove

NormaJean65 · April 2011

Thank you "voraciousreader" and "allmylove" for the encouragement in you notes. I am going to try to make an appointment w/ the other onco (female this time) that I have seen in the past when my reg. onco was out for surgery. She is more forthcoming and that is what I need right now. None of us do well in the healing or fighting process if under stress & anxiety. Today I am just shall we say disgruntled !!! and when I get that way I fight back. Smile

Bless you & have a great day !!

Norma Jean

NormaJean65 · April 2011

allmylove,

Your mother is still a young woman (younger than me) and if she is in relatively good health otherwise, I would vote for the Chemo. What other options did they offer?? I will tell you having gone through 6 tx it is not an easy, piece of cake journey but my body doesn't respond like the text book predict. Smile Everyone has to make the choices for themselves. Tell me what the TC stands for. I think I know but don't want to assume.

I do understand wanting your mother to live forever as my daughter even though a nurse wants for me. My motivation to do Chemo was my only grandson (only grandchild period) who wasn't even 6 y/o yet in order to "buy myself" more time with him. Even going through a mast & chemo, he is worth it all to me.

Did any of the oncos that you have seen mention giving your mother Tamoxifen or Arimadex or something similar after chemo usually for 5yrs. ? If you have already gotten responses to these questions I haven't gotten to them yet so forgive me for repeating.

Will keep you and your mother in my prayers as you have many decisions to make and regardless of what is decided, it will alter your mother's life forever.

Failed oncotype - chemo or no chemo?

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