Join Us

We are 218,167 members in 84 forums discussing 160,926 topics.

Help with Abbreviations

Topic: At what % of benefit is chemo worth it?

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Jul 11, 2019 04:19PM

OnTarget wrote:

The newest info from the TAILORx trial tells us that a bunch of people in the intermediate Oncotype score area can skip chemo as it doesn't add much benefit. There is another article that was published in the New England Journal of Medicine on June 20, 2019, "Clinical and Genomic Risk to Guide the Use of Adjuvant Therapy for Breast Cancer" where the TAILORx team go on to further talk about how clinical risk factors into outcomes based on Oncotype scores, age, and clinical risk.

My oncotype score was 16, and the Oncotype report states that I have a 4% chance of distant recurrence in 9 years, and that chemo will add less than 1% of benefit. So my doctor said no chemo (obviously), and I agreed!

That sounded great, but now a month later, I read the above article which after applying my Oncotype score, my clinical risk, and my age, my actual statistics are a 12% chance of distance recurrence with tamoxifen alone and 5.5% with chemo added. That is quite different than what was reported on the oncotype test.

At what point do most people feel that chemo is worth it? I would have said that a 5% additional chance would be worth chemo, but I've read opinions from posters who feel that 5% isn't worth it.

I am waiting to talk to my MO, but I have a feeling that she feels that the fact that I'm doing OS + AI will make up for the gap based on the results from the SOFT/TEXT trials.

I don't know though...if I get metastatic cancer, I'm going to be kicking myself for not getting chemo.

Any thoughts on how you chose your cut-off point?

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Page 1 of 1 (15 results)

Posts 1 - 15 (15 total)

Log in to post a reply

Jul 11, 2019 04:28PM muska wrote:

Excellent topic for discussion. I think since there are so many factors to take into account one should not rely on a score alone, that’s where clinical experience of the treating team and oncologist in particular should have the final say - of course everyone has the right to disagree w their recommendation

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
Log in to post a reply

Jul 11, 2019 05:30PM Beesie wrote:

OnTarget, I'm not going to answer your question, because the answer depends so much on an individual's risk tolerance, and also depends on their health and the likelihood that they might experience serious side effects or difficulties with chemo. Age is another factor. A 5 percentage point benefit for someone who is 80 might not hold as much weight as a 5 percentage point benefit for someone who is younger. There are just so many personal variables that play into this. In my time on this site, I have seen women opt to have chemo with only a 1% benefit and I have seen women opt out of chemo with a 10% benefit.

What I am going to comment on is your new results - and my frustration that Genomic Health don't provide this more personalized information along with the results, and that most MOs don't use the program available from Genomic Health that very quickly gives a more personalized metastatic risk assessment.

I have posted several times on the board about the Oncotype RSPC (Recurrence Score Pathology-Clinical) model that some (or maybe all, I don't know) MOs have access to. It's a computer model, and they simply input the patient's Oncotype score, along with the patient's age, the grade of the cancer and the size of the cancer, and they come up with a 10 year risk assessment that is much more personalized than what the Genomic Health Oncotype report provides.

Why in the world doesn't every MO use this? For people like you, who are younger and who have a larger than average tumor, an Oncotype score that indicates "no chemo needed" might change to a chemo recommendation. Alternately, for someone who is older and who has a small non-aggressive tumor, a high Oncotype score that normally would indicate the need for chemo might turn out to be very low risk, with little benefit from chemo. My MO showed me the model, and the differences in metastatic risk can be huge. It boggles my mind that all MOs don't use this model when reviewing the Oncotype results with their patients. Other than my own references to this model in my posts here, I've only seen 3 or 4 people ever mention it on this site.

I'm sorry that you are getting this new news a month after getting your Oncotype score. It will be very interesting to see what your MO says. Good luck with your decision. I have to admit that I don't know what I would do in your situation.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Jul 11, 2019 06:22PM Beesy_The_Other_One wrote:

OnTarget, this will not come as a surprise to Beesie, but if it were me at your age, that 12% chance of distant recurrence would influence me to pursue chemo. In regular life I'm considered as a risk taker (willing to make what others would consider higher risk investments, etc.) but I've come to realize that in the world of breast cancer, I am very much risk averse. I don't know as much about ILC, but the fact that it's known as the "sneaky" breast cancer only magnifies my view on this--and ITC's in a node only add to this for me. At the very least, I would let your MO know you are aware of the Oncotype RSPC Model and if he/she doesn't know about it or doesn't care, it might be worth a second opinion. Strike that--in your case I would pursue that either way. You are in one of those situations where having at least one more set of eyes on your case would be helpful.

~The Other Beesy

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
Log in to post a reply

Jul 11, 2019 06:27PM OnTarget wrote:

Thank you all for your thoughts!! I really appreciate it!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jul 11, 2019 07:01PM wallycat wrote:

Beesie always has the right and scientific answer but since you asked...

My breast surgeon looked at my risk with antihormonal and no chemo; then chemo with antihormonal. He said if I didn't see a better than 4% improvement, skip the chemo. I think I was just at the 4%. It is a very hard decision because chemo holds its own risks but if you are young and have an aggressive cancer, it makes sense.

The results from TAilorX indicated that women younger than 50 with intermediate scores should do chemo. At the time, these results were not in yet and I was dx at 49, but after surgery, was 50 (dx one month before b-day--what fun!) so I probably should have done it. I've asked my onco if it is too late to do it now and she thinks I should just leave things be.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
Log in to post a reply

Jul 11, 2019 07:35PM OnTarget wrote:

Thanks Wallycat!


Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jul 11, 2019 10:06PM Artista964 wrote:

my onc never did onco score. It was a no brainer at this stage and my ER, Ki67, 1 node and size and location of tumor.

Dxd at 50. Went thru it all on my own by choice. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, PR+, HER2- Surgery 8/6/2015 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jul 11, 2019 10:17PM AliceBastable wrote:

Isn't the oncotype only run on early stage and grade tumors, ones and twos? I thought stage III was automatic chemo.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
Log in to post a reply

Jul 11, 2019 10:18PM MountainMia wrote:

Oncotype also isn't done on ER- tumors, so I didn't have it done.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
Log in to post a reply

Jul 11, 2019 10:24PM OnTarget wrote:

Thanks all!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Aug 3, 2019 09:15PM OnTarget wrote:

I ended up deciding to do Chemo. I did ask my MO for my RSPC score, and it was 13% (thanks Beesie!).

There was a ton of back and forth on the decision and the MO did point out that the results of the newest TAILORx study indicate that it appears as though the chemo benefit is actually an ovarian suppression benefit in people with high clinical risk in my age bracket. But that is currently a theory and not exactly studied. I decided to go with what is proven to work and by that study, chemo give me a 6.5% improvement in distant recurrence.

Regardless of the negatives of chemo, I'm glad to know that I didn't leave anything on the table given the current state of scientific knowledge.

Thanks everyone for your input!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Aug 3, 2019 09:50PM Beesie wrote:

OnTarget, I'm sorry that you need chemo, but glad that you were able to get the information you needed to help you figure this out.

So if I understand correctly, you saying that your Oncotype score of 16, which presented a 4% risk of distant recurrence based on the generic results provided in the report given to patients, changed to a 13% risk of mets once your MO used the Oncotype RSPC model, which added age, tumor size and tumor grade into the risk calculation? Wow! It makes sense, given your younger age and the larger size of your tumor, but what a difference. Like I said earlier, I don't understand why every MO doesn't use this computer model to personalize the risk calculation for every patient.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Aug 3, 2019 10:53PM - edited Aug 3, 2019 11:06PM by skv0123

OnTarget- I don’t know a what to say. This whole thing is confusing.I'm in a similar situation. My MO ordered the EndoPredict which shows overall risk 3.2 which of course is right in the middle of the 1-6 scale although the test considers me “low risk." It shows 8.9% chance of distant recurrence 0-10 years, 2.7% benefit of chemo at 10 yrs & 7% risk late distant recurrence at 5-15 years.

I had a BMX July 3, 2019. I had 2.7 cm tumor of ILC with pleumorphic features, 0 of 3 nodes involved. Left breast was had no evidence of cancer just metaplasia. I am currently on Tamoxifen for 3 mths as I take this all in & slow down a little. Planning to do ovarian suppression with AI in 3 mths.

Local oncologist said they would “give me chemo if “I wanted it" due to my age & my being at the “high end" of low risk. Second opinion at a larger hospital with cancer center said they would not encourage chemo due to benefit vs risk. Second oncologist specializes in breast cancer, local one treats it a lot . I feel so confused.

UGH

Thanks for listening and any thoughts? What is different between EndoPredict & Oncotype

Log in to post a reply

Aug 4, 2019 09:15PM OnTarget wrote:

Beesie, yes, exactly! The new TAILORx data showed similar numbers for "high clinical risk", with a 6.5% chemo benefit.

The challenge is that there was no benefit for people under 40, increasing chemo benefit the older you are between 40 and 50, and then no benefit over 50.

The experts think that this is because between 40 and 50 you are more likely to be pushed into menopause, and they think that menopause is the real benefit, not chemo.

The challenge is that this is a theory, while chemo is proven. So I'm taking the chemo route and hoping for no permanent side effects.

Skv0123- I don't know anything about Endopredict- what study guides it's usage? In my grouping (intermediate risk), TAILORx guides chemo usage.

I have ILC w pleomorphic features, my Ki67 was 40, I'm grade 2, and I have ITC in one lymph node. I think my cancer is more likely to respond to chemo given its aggressive nature, and I feel that my risk is higher than it may appear.

I also got a second opinion. My primary hospital is top 10, and I went to #2 for my second opinion. They all seem to say that OS+AI should be adequate, but also agree chemo could provide some benefit.

I am fervently hoping I made the right choice, but I think I'll sleep easier knowing I tried my best with the data I had.


Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Aug 4, 2019 10:03PM - edited Aug 4, 2019 10:03PM by skv0123

OnTarget -


That is all we can do is So the best with info we have. Here is info about EndoPredict:

https://www.breastcancer.org/symptoms/testing/types/endopredict-test

Page 1 of 1 (15 results)