Survival statistics

Could it be because you put unknown number of nodes?

BlueKoala,  Look on your pathology report.  I did not know how many lymph nodes had cancer and had chemo before surgery.  But the pathology report said they removed 20 lymph nodes and 5 were treatment affected which when I asked what that meant, they said you had 5 that had cancer but the chemo had removed it all. 

Recurrence and survival rates are, to some extent, related to stage. As someone diagnosed at Stage IIIA, I know that I am more likely to recur than someone at Stage I. Plus, our survival rates are lower at Stage III.

But, that doesn't explain why some women recur at Stage III and some do not. On my chemo board, three breast cancer patients who ended up Stage IV were Stage III, and two of them were ER-/PR-/HER2+. ER-/PR-/HER2+ cancer can be aggressive, and yet BC patients with that variant cannot rely on hormonals as a preventive measure. So, type of cancer undoubtedly plays a role.

BlueKoala, I see you were only dxd last year, these fears do play on your mind less as time passes (really, truly). You are very young to have this rotten disease, and I'm sure it feels like your life has been turned upside down and inside out. For a while every ache and pain will automatically be "cancer", that is normal too. One day you will realise you haven't thought about cancer for a couple of days, that is liberating.

Stay vigilant, keep your regular appointments, but don't let the fear consume and overwhelm you.

I'm a Qlder too

letsgogolf...interesting theory about location of tumor affecting recurrence rates. I don't think the location is taken into account in any of the prediction models. That would mean they are very inaccurate. My MO at a major NYC university based hospital told me she doesn't put a lot of stock in the oncotype. She feels it is outdated. I guess thats why I have always thought that recurrence is a crapshoot and we can only hope we fall into the right category! Good luck to all navigating this complicated disease.

KathyL624 Yes, I have heard that an MRI should pick that up. A little worrying because I did not have any tests after my diagnosis. My team said that I did not need any but I am not 100% convinced. With a grade 1 tumor and score of 3 on my Oncotype I know I should not have had micromets in the sentinel node but somehow I did. 2 micromets in the first node only of 8 taken. Both were tiny but they were there. I have also read that lots of these micromets are caused by the biopsy itself. Too many unknowns for comfort, in my opinion. I have also heard that the hormonal treatment should take care of anything left behind. I hope that is right.

Hi BlueKoala:

Please ask your Medical Oncologist if LIfeMath and/or PREDICT have been validated in patients who received neoadjuvant chemotherapy and whether these particular tools are sufficiently reliable estimators in your particular case.

Hi Dtad:

The remark that the OncotypeDX test for invasive disease is "outdated" strikes me as a minority view. As with any biomarker test, the clinical utility of this test depends on the scope and quality of clinical validation demonstrating its prognostic ability (re recurrence risk) and/or predictive value (re benefit of chemotherapy). In this regard, the available clinical validation for the test seems to be generally well-regarded in the medical oncology community as reflected in NCCN guidelines for breast cancer. For example, the Oncotype DX test for invasive disease ("21-gene test") is prominently featured in the treatment algorithm for certain types of hormone receptor-positive, HER2-negative breast cancer in NCCN guidelines (Version 2.2017, dated April 6, 2017). No other assay is mentioned by name in the treatment algorithms up front (See NCCN Guidelines for Breast Cancer, Chart BINV-6, and its reference to "21-gene RT-PCR Assay" which is the Oncotype test). A footnote mentions very generally that "Other prognostic multigene assays may be considered", and other tests such as MammaPrint are referenced in the Discussion section of the NCCN guidelines. The Oncotype test is also one of several such biomarker tests included in the appropriate case in the recent 2016 ASCO Biomarker Guideline and the 2017 Update of the Biomarker Guideline.

In January 2018, new AJCC staging criteria will go into effect in which particular results from biomarker tests (if available) will impact stage assignment. OncotypeDX for invasive disease is one of the biomarker tests incorporated into the new staging system, suggesting that the test is not seen as outdated. See for example, Giuliano (2017).

In an older post, you mentioned: "My MO also told me the recurrence rate studies are 30 years old!" Perhaps this is the basis for her view that the test is "outdated"? The initial validation trials which are featured in the Oncotype reports were "prospective/retrospective" in design. Biomarker tests developed in one group of patients should ideally be validated in an independent group of patients. When the test was first developed, rather than initiate a multimillion dollar prospective clinical validation trial of a biomarker of unknown utility, which would not yield results for many, many years, the researchers accessed stored tissue samples from older, completed prospective, randomized trials with available long-term follow-up data regarding clinical outcomes ("base" trials). They used the newly developed biomarker test on stored tumor tissue to assign Recurrence Scores, and then correlated Recurrence Scores with the outcome data from the completed "base" trials (e.g., 10-year distant metastatic recurrence for node-negative (N0) disease). While not as robust as fully prospective trials, many biomarkers are first clinically validated using such prospective/retrospective designs.

Such completed "base" trials were necessarily initiated many years ago (in order to have 5-year or 10-year outcome information in hand). For example, to investigate the relationship between Recurrence Score and 10-year distant recurrence risk with Tamoxifen alone in node-negative disease, tumor tissue from patients who participated in the Tamoxifen alone arm of NSABP B-14 were used. That base trial compared Tamoxifen alone with placebo, and patients were enrolled between 1982 and 1988. Because the endpoint or outcome assessed was distant recurrence, variations in local treatment would not be seen as undermining results based on such patients. Another prospective/retrospective validation study was based on the more modern ATAC trial and confirmed and extended the clinical utility of the Recurrence Score to those receiving the aromatase inhibitor anastrozole.

To investigate the relationship between Recurrence Score and the potential benefit of chemotherapy in node-negative disease, tumor tissue from patients who participated in NSABP B-20 were used. That base trial randomly assigned patients to receive Tamoxifen or Tamoxifen plus Chemotherapy (either CMF or MF), enrolling patients between 1988 and 1993. To the extent that different regimens may offer differing benefit, this can be incorporated into medical advice.

So while the underlying "base" trials that supplied tumor tissue and outcome data featured in the reports are relatively old, the assay itself and validation studies are of more modern vintage (2004 and later). In addition, the studies featured in the Oncotype reports are not the only studies available. For example, I mentioned TransATAC above. And the results from the early retrospective/prospective validation trials provided the rationale for the design of larger, fully prospective clinical trials such as TAILORx, RxPONDER and WGS Plan B. So far, the available 5 year results from TAILORx in node-negative patients with Recurrence Scores from 0 to 10 (assigned to received endocrine therapy alone) are consistent with and bolstered the early validation findings, and additional results are eagerly awaited. Meanwhile, some rather large observational studies are also generally consistent. That said, the scope and quality of available clinical validation of the test varies in different sub-groups of patients and therefore may be accorded different weight in different situations.

BarredOwl

[JAN. 27, 2018:

For information only, please note that Table 8 of Giuliano (2017) re the 8th Edition of AJCC staging as originally published contained errors. A Corrected Table 8 has been published which substantially differs from the original:

ERRATUM TO GIULIANO (2017) IN TABLE 8:

http://onlinelibrary.wiley.com/doi/10.3322/caac.21401/full]

letsgogolf...my oncotype was a 9, so in the low range like you.  My doctors put a lot of faith in it because of the results of the Taylor X trial.  Did you have an inner quadrant tumor as well?  Did you ever ask your doctors about it?

Bluekoala, I am reading your posts and nodding. Yup. Know that feeling. Know that thought pattern. I find myself there often. I am just over a month out of radiation as I type this and my boob is healed but looks weird. I still get shooting pains from the surgery site. I have lymphedema in the breast and it has swelled each night and has big gouge marks in it from my bra (other boob does not do this). I have pains in my breast and armpit and think, is it cancer? And I can't say this to anyone in my family because the LAST thing they want to hear is that I am thinking about cancer. They don't want to think about it so I can't think about it and sure as hell can't talk about it either.

You are young and this is so devastating for you and your family. It is really difficult to find the way to go forward, to live anyway, with that fear in the back of your mind, like a dull headache. There. Throbbing. I hope you find your balance. It's a struggle we all face.

Some people here have found ways to improve their health and give themselves the best chance at a long life. Yoga, exercise and healthy eating, alternative medicines and avoiding stress. I have a great amount of admiration for anyone who can be so self disciplined.

As for me, if I only have a few years left, I have decided it's time to go with my inner bad self and become a degenerate criminal. I plan to not exercise at all because sweating sucks and being out of breath annoys me. I am not only not going to be a vegetarian but when I eat my big, juicy steak, I am going to eat the damn fat on the outside edge with a generous helping of BBQ sauce! I am going to put butter on my mashed potatoes, drink Coke and wine (not together!) when I feel like it. I am going to even consider smoking those big, fat cigars because they look cool and I love the smell of them. Hell, I might even drive fast while not wearing a seatbelt. That's right. You heard right. Drive fast, no seatbelt. I know - badass! I am no longer going to bite my tongue when I encounter morons. I am no longer going to accept dinner invitations from people who bore me and I am not going to answer the phone if I am in the garden. I am going to ENJOY the pleasures that this earth has to offer. SMELL the flowers, SEE the stars, TASTE the steak and butter and wine, FEEL cold river water on my feet and wind in my hair. RIP Hub's shirt off and rub my face all over his chest (while he screeches hey, that's my favorite shirt!). Or just be peaceful (in between thoughtful and very picturesque puffs on my monster cigar) and ponder the vast and mysterious intricacies of this beautiful, precious, precarious, painful and fabulous life. If I have this sword hanging over my head, I am not going to focus on trying to do everything right to live longer. I am going to be a pain in the ass and give myself permission to live larger. Badder. More funner! (that's not a word)

Bluekoala, I am NOT making light of the demoralizing, paralyzing terror the thought of death brings me. It is heartbreaking, the thought of not being here anymore. For me, fighting back with black humour and a bad attitude is the ONLY way I will claw myself out of this hole. For many, living a better life is the answer that sits well with their soul. For me, living a badder life is the only way I get motivated these days. Otherwise I want to cry a lot. I hope you find your balance (like, do yoga while drinking beer!) Hugs.

Yes me too! Runor. You really have a gift for writing, you should start a funny/ angry but informative BC book and make a bundle. I ate some cheese crackers gluten free and low carb Breyer's ice cream bar today and I'm about to flog myself!

Let'sgogolf, your theory on inside tumors and nodes makes perfect sense to me.

Blue Koala you have asked the right questions on survival, keep it up.

KathyL624, No, my tumor was upper outer quadrant. My incision is almost off of my boob and only an inch away from my sentinel nodes incision. I have worried a bit because my sister also had breast cancer only 18 months before mine and the location was 6 o'clock, very close to the edge like mine. She was told that this is a rare location. Her nodes were clear even though her tumor was 1.9cm, grade 2 and she had a very weak progesterone level. Her Estrogen was really good at 90%. Her Oncotype score was 17. She did not have chemo but she did have breast only radiation. I had radiation to nodes with the exception of the intramammary. We have both done well with the Arimidex - no side effects at all.

Runor, Love your post! I want to be your friend, too!