Thinking about declining any further treatment....

I am young with a grade 1 tumor as well. I didn't want to take any chances, so am on the meds. I think the oncotype will give you a better picture of things. When do you expect that?

You have a very early stage, low grade cancer and have excellent odds for cure. If you decide to forego radiation, please at least consider tamoxifen as it's a systemic treatment and will improve your odds even further. Low grade or not, it's still cancer and you're at the best place to stop if from progressing.

Hi poopysheep:

The results of the second pathology review and the Oncotype Recurrence Score information should be helpful to further inform your decision-making.

For information only and (as always) subject to confirmation with one's Medical Oncologist, the average Recurrence Risk shown in the node-negative (N0) and node-positive (1-3 N+) test reports and associated with particular "Recurrence Scores" are based on studies in groups of patients who all received tamoxifen (or tamoxifen plus chemotherapy). Thus, if a patient declines endocrine therapy, their risk of recurrence would be much higher than shown in their Oncotype test report.

The test reports do not include an estimate of recurrence risk without any endocrine therapy. However, one's Medical Oncologist can provide an estimate (e.g., an extrapolation based on the potential risk reduction benefit of tamoxifen or an aromatase inhibitor).

With that additional information in hand from their Medical Oncologist, some patients may still choose to decline endocrine therapy, after considering their personal risk / benefit profile in light of their personal risk tolerance. But it would be important to understand that the recurrence risk information provided by the OncotypeDX test for invasive disease "assumes" 5-years of endocrine therapy (e.g., tamoxifen, an aromatase inhibitor).

Regarding grade, interestingly, there appears to be some subjectivity in grade determination, as shown by some lack of concordance between locally determined and centrally determined grade. See for example, the results and paragraph 3 of the Discussion of this paper:

"West German Study Group Phase III PlanB Trial: First Prospective Outcome Data for the 21-Gene Recurrence Score Assay and Concordance of Prognostic Markers by Central and Local Pathology Assessment"

Gluz (2015) Main Page: http://ascopubs.org/doi/full/10.1200/JCO.2015.63.5383

==> A pdf version is available for free under the "PDF" tab under the list of authors.

The Figures are quite interesting, particularly Figure 2(A).

BarredOwl

For any given study, you should consult the publication to determine the specific meaning of the terms as used that study, which may not be the same in all studies.

This was a "multi-center" clinical trial, with multiple participating clinical trial sites (i.e., a number of different institutions).

In this particular study, they state:

"Slide review, IHC, and fluorescence in situ hybridization analysis were performed in an independent central laboratory (Institute of Pathology, Hannover Medical School, Hannover, Germany). One experienced breast pathologist (M.C.) assessed histology and central grade using hematoxylin and eosin–stained slides, and a second pathologist (H.H.K.) reviewed them; both were blinded to the clinical data and to Ki-67 expression."

The version of the clinical trial protocol (also available at the link above) states:

"2.6 Central Pathology

In the planB trial, central pathology review of all cases will be performed as a prospectively planned analysis by the Dept. of Pathology at the University Clinics in Hannover, Germany. Systemic treatment will be solely allocated according to local pathology and central results will be used for scientific purpose only and thus not reported back to the individual investigators. The central laboratory will perform their analyses blinded to the local results."

We can assume that local grades were determined by a variety of pathologists at a number of different institutions. However, I cannot find a clear statement regarding the identity of the "local" laboratory that made the final "local grade" determination. For example, is it the lab that did the initial surgical pathology, possibly prior to recruitment? Or is it the clinical trial site lab? My layperson guess would be that the "local grade" of a patient is the grade as independently determined by their local clinical trial site pathologist.

If you are conducting a multi-center clinical trial in which you plan to look at how grade may correlate with Recurrence Score, you are interested in controlling for known inter-observer variability in calling grade, and in understanding how issues in calling grade may affect results.

BarredOwl

I think I suggested this to you on another thread, but you may want to investigate having RADs in the prone position. This minimizes the possibility of heart and lung damage. We have a lot of treatment choices, but sometimes we need to push for them.

poopysheep, For radiation I had 19 total rounds. Very doable and did not hurt my skin. My 2.6 tumor was on left breast at 2 oclock. There is also a partial breast radiation that lasts 5 days--twice a day. It is exterior radiation. Just wanted you to about any rads format. Good luck with your decision.

I'm 48. I'm recovering from my first chemo. I don't know how I will get the strength to keep moving

ChiSandy,

That was so well said. I feel so much more frail than I was before this mess started, and am worried about effects I will suffer down the road from all the toxic treatment I have had (chemo) and will have (radiation--whole breast, lymph nodes and chest wall). It sounds like you have done a good job adjusting to the new reality. I will take a page out of your book (or try to, anyhow).

I didn’t want rads so I did a bmx instead. A bmx doesn’t guarantee a pass on rads, but for some it does. I am happy to have avoided rads, but have comfort in knowing the bmx greatly reduced my risk of local recurrance.

poopysheep, I have often said the kind of treatment you choose depends on what kind of gambler you are because this whole cancer thing is a crap shoot. I believe people choose the treatment that gives them the most comfort and helps them get through today. Many need to "throw the kitchen sink" at it to feel secure enough to move on. Other are comfortable with less treatment now and attack it later if it comes back. There are no guarantees either way.Good luck to you.

PoopySheep.. I'm 41 and very active, thin, etc. I've been on Tamoxifen for 5 months and don't have one side effect.. I feel perfectly normal and healthy. I too was freaked out, but I jumped in and nothing.. nada... it feels like a sugar pill. You can always try it and stop if you do have SEs, but in all honesty, the majority of women have ZERO side effects. They just don't come on here and brag about it.

I would STRONGLY suggest you try Tamoxifen... you can always stop. Whereas Rads do last damage, Tamox does not.

Hi poopysheep!

Looks like your concerns about foregoing treatment center about having a diminished life post treatment which (contrary to the "popular wisdom" out there) does not have to be the case. I had the works - lumpectomy, chemo, radiation, 5 years of aromatase inhibitors. I skied, swam, cycled, ran, and hiked throughout, although I did need to dial things down while going through chemo. By this, I mean that I couldn't cycle up hills although just fine on the flats. I am now fitter than ever.

I think I am at least 15 years older than you are. This past summer, I did 10 for 10 Seattle-to-Portland Bicycle Classic. I did the one 6 years ago within 6 weeks of finishing radiation. That is 200+ miles over 2 days of cycling. I don't do the mountaineering you do, but it sounds like great fun. I can't wait for ski season to start so I can hit the backcountry Nordic trails.

I knew I would most likely die if I didn't do the full deal which was more than motivating. I also believed that I would come through everything just fine.

And guess what??? I did.

As for the recommended treatment. I understand that it's scary, but I think that the possibility of having cancer come back is a lot scarier. BTW - those of us who get in major exercise tend to have way fewer side effects.

I would go forward on that assumption and expect to be fine unless proven otherwise. Such as your adventure post lumpectomy. I was able to train throughout radiation, being no more than a bit tired at the end. I was a bit achy on AIs, but ibuprofen took care of most of that.

So please reconsider treatment, and think of this period of your life as more of a "speed bump" than anything else - an experience that gets "layered into" your active and wonderful life. - Claire

I'm on arimidex, so I can't comment on how tamoxifen would be, but my side effects are minimal. I was however already post menopausal when I started so my estrogen was already reduced, the drop in hormones was not big for me.

My natural menopause, which started in my late 40's was horrible. I actually had huge spikes in estrogen at times, which I believe to be the cause of my BC. I wish they would have put me on a drug to even out my hormones at that time.

You may find tamoxifen to be not too bad.

I'm on Aromasin, so can't comment on Tamoxifen either. But, despite hearing countless horror stories about Aromasin on these boards, I have minimal side effects. You never know how you'll react to any therapy until you try it. If it does produce awful side effects, you can always stop. They're just pills. If they make you feel awful, you can just stop taking them.

I admire you ladies for your active lifestyles! I think that the most I can say is that I swim twice a week, and walk 40 minutes twice a week. Not very exciting, I'm afraid.