Stage 1, grade 1 and pre-menopausal
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labelle....heavy chemo and bone marrow transplant was NOT the "gold standard." Far from it! It was very experimental and that's why it became a minefield! Some physicians were doing it. Desperate patients were DEMANDING it. Could anyone blame them? Lawyers and politicians fought insurance companies. Doctors fought one another. Patients fought their doctors and insurance companies. Wonder why it is a breast cancer battle?........The lesson learned from THAT battle is we need to respect evidence based medicine. Ultimately, lives were unnecessarily lost, but much was learned..."Gold standard" hmmmmmmmm...I think not!
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC112303...
Above is a good summary of the bone marrow debacle written by Dr. H.Gilbert Welch. Today, Dr. Welch is very involved in the current debate of over diagnosis and over treatment.
http://www.amazon.com/Overdiagnosed-H-Gilbert-Welc...
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Perhaps I should have phrased that as being "touted by some as the gold standard for BC treatment" in the 1980s. But they too had supposedly good evidence, studies, eventually got insurance companies to start approving bone marrow transplants for BC patients, etc.
Basically, I was responding the current evidence showing Oncotype testing for even node positive persons (like me) shows chemo can safely be skipped w a low Oncotype score-that we've come a long way from the 1980s in terms of who needs chemo/when chemo is needed.
But still, modern medicine has indeed made some major blunders, meds and treatments later proven as unsafe, were approved and used based on the science and studies available at the time. I think this should cause us to pause for at least a minute.
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labelle...you are missing the overarching issue with respect to the bone marrow therapy. It was an issue of losing sight of evidence based medicine and medical science being usurped by desperate patients, politicians, lawyers, a handful of physicians and even more lawyers....
With respect to the OncotypeDX and its development....physicians knew for many years that they were over treating patients. That said, they needed to come up with an ethical way of not harming patients and at the same time prove that less is more. The gold standard begins with first doing no harm and then creating clinical trials that yield statistically significant evidence....it takes a very long time to yield evidence that leads to a change in standard of care. In the future, let's put our general statements into perspective. It is often easy to have 20/20 hindsight and even easier to have a narrative that makes physicians and researchers look bad. However, I choose to see them and this journey in a different light.....
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BTW...there WASN'T "supposedly good evidence" supporting the use of bone marrow therapy. There was one questionable study and FOUR finding no benefit.
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Help...
I am so upset. I had my first meeting with the onc today... and I hated him. I don't even know where to begin. He looked like he'd just graduated from high school, was not dressed professionally, had a slouchy, sloppy demeanor without confidence, looked like he'd just woken up from a siesta, seemed unprepared, and did not understand half the questions I asked (could have been language barrier, but these were standard questions any idiot, much less an oncologist, could answer), and just a big zero for personality. All he could do was crow about the wonders of Tamoxifen--truly, he is in love with the drug. That was the only thing that seemed to spark any life in him. He waved off all my concerns about the widely known side effects. To me, any good doctor should tell you the side effects and risks. Worst, I drove two hours to this meeting expecting the results of my oncotype test and a definitive treatment plan, and it was not ready! Why did they not reschedule my appt?! I am furious and cannot stop crying.
Is there no other alternative for a premenopausal woman, with IDC stage 1 (no longer tubular by the way, but has tubular features), upgraded to grade 2, who had a tumor highly estrogen and progesterone positive? This doc said I'd be on Tamoxifen for 10 years and expects the new protocol to come out which would be for the rest of my life! I am just stunned.
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Edited: Read pathology report (in Spanish), and he meant upgraded to Grade 2, not Stage 2. The language barrier is a challenge.
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Until you get your OncotypeDX score, I think you are still in a holding pattern. Following diagnosis, the most stressful time is that limbo period between diagnosis and beginning treatment. Once you have a treatment plan in place that you are comfortable with, you should begin feeling better. Depending on your risk of recurrence, if you are young, you might consider ovarian suppression and an aromatase inhibitor. It appears that for a subset of women, based on the SOFT trial, you might consider it.
Regarding side effects, you should be told of all the possible side effects. Furthermore, you should also talk with your doctor about any other medical issues that you might have. If this physician is not helpful, perhaps you might find another physician.
That said, all treatments come with side effects. That doesn't necessarily mean that you will have them. And, if you do get side effects, that doesn't mean they might be terrible. I think you need to find a doctor who can answer all your questions so you can find a treatment plan that is right for you!
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Thank you, voraciousreader, you are spot on. Of course, I was lead to believe I was getting the oncotype results today, or I would not have made the long and winding drive. I did not understand the point of meeting my MO today if he could not prescribe a treatment plan. The pathology results could have been emailed to me. I am calming down; I'll get over it.
I asked about OS + AI, but he didn't seem interested in that topic; he was too enamored with Tamoxifen. Maybe I am too old for it anyway at 51, but I am in very good health other than this "little thing" called cancer.
And I agree--I need a new doctor. Anyone know of a great oncologist in the S.F./Bay Area? If so, please private message me.
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I had an oncotype of 3 and high risk mammaprint. My oncologists suggested oophorectomy and aromasin. But I am pregnancy related breast cancer. Anyone with different scores between oncotype and mammaprint
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Srh....there have been a few sisters who have had contradictory scores....however, none that I could recall, where the Oncotype DX score was so low....often, the Oncotype DX score was in the upper mid teens...or in the dreaded intermediate range and the Mammoprint test was done to clarify whether or not chemo was necessary.
May I ask why and how the decision was made to do both tests? If you had the Oncotype DX test first and the score was so low, why was the Mammaprint test prescribed?
You mention that yours was pregnancy related. Could you explain further? Could you tell us more about the description of your tumor? I'm assuming it was Stage 1 Grade 1 Er Positive and HER 2 negative. Node negative? I'm very confused and trying to understand why you had the Mammaprint test.....maybe if you fill in the details, there might be a better explanation for the discrepancy....
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hi srh,
I was one w split - oncotype 14 and high risk Mammaprint. These are difficult choices. After a lot of soul searching I did the chemo - it scared me a lot, but cancer scared me more. And it wasn't too bad. I am young (in my 30s) and worked straight through (I also did cold caps so kept my hair).
I have no idea if this was the right thing to do or not. But for me the high risk Mammaprint trumped the low risk oncotype.
Interestingly the chemo seems to have put me into (very) early menopause - I haven't had a period in 6months. Maybe it will still come back, but strip tests suggest not. Could well be this is the biggest benefit from chemo for me.
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hi: the tumor I had was missed for a whole year cause I just have birth and sonogram didn't find it. I got pregnant again and the tumor grew very fast. I was stage 2 , due to size, no node involvement. Grade 2. Oncotype was a 3, but my oncologist thought the results weren't right, the pathologist on Oncotype conducted two tumor meetings on my sample and still got a 3, but they said that they didn't had anyone pregnant on the oncotype population. Mammaprint was ordered and high risk was their result. Pregnancy related breast cancers are very aggressive so chemo was highly recommended. I don't know why oncotype was so low.
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Srh....thanks for the clarification. I'm glad to hear that there were many discussions in planning your treatment. Often when young women get breast cancers, especially discovered during or right after pregnancy, they tend to be very aggressive. That is, HER 2 positive or triple negative. Sounds like yours wanted to be very nasty, but tended to behave. So I guess what you have is a very well behaving, aggressive tumor. Your team is correct that the Oncotype DX test was not established using samples from pregnant patients, because it is so rare. Therefore it is not strongly validated for patients like yourself.
Seems like you still have great prognostics and should do well! Happy holidays to you and all our sisters!
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Looking for ladies out there who finished or stopped their Ovarian suppression shots of Zoladex or Lupron.
Did you get your period back ????
Did the Tamoxifen keep you in menopause ?
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pooh. Ive stopped mine 2x to see if i was in meno. Both time my periods came back within 2-4 months
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Hi again Rozem
How old are you Rozem ......?
I am 48 and figure that my period is gone forever after these 18 months of zoladex ?
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By the way.... the women in the SOFT trial that were in the O/S arm (and given zoladex or Lupron ) received O/S drugs for how long ???? Were the women on O/S drugs for the whole trial ???.......where they only on it for 2 years ??0 -
pooh im 45, 46 in a week. Diagnosed at 42 Got my period the last time a couple of months ago after i stopped lupron, came back fairly quickly so Im no where near menopause. At 48 not sure what yhe chances are
Good questions. I will have to ask
VR any idea?
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Thanks Rozem ...half of me wants my period back .....so that gives me hope....but the other half of me doesn't ......!0 -
http://www.nejm.org/doi/full/10.1056/NEJMoa1404037
http://www.ascopost.com/issues/june-25,-2014/exemestaneovarian-suppression-reduces-recurrence-vs-tamoxifenovarian-suppression-in-premenopausal-breast-cancer.aspxIn the data that was published earlier this year about the SOFT and TEXT trials..., patients received 5 years of O/S. Two thirds of the participants were between the ages of 40- 49.
Reading further from the disclosure from San Antonio...
http://www.nejm.org/doi/full/10.1056/NEJMoa1412379...It appears that the median age was 43...The study had hoped to include more women younger than 40.
So.....what does it all mean for older women? I don't think we can make an informed judgment....It was the younger premenopausal women who were more likely to recur, especially those who had chemo. So, five years of O/S seemed like the charm for them at least in the short term. For me, I was asked to participate in the trial and declined. I was 53 at diagnosis and premenopausal. I could not imagine doing O/S for 5 years, when I probably would have entered menopause at some point during those 5 years. My MO and I decided to stop O/S at 2 years when I reached 55. It appears that I did reach menopause following the two years.
For women diagnosed in their mid to late 40's...and didn't do chemo....this study doesn't offer guidance. Again, it is late recurrence that we need to be concerned about and this study hasn't matured enough to yield significant data. So, Pooh...what would I do if I were you? If the side effects aren't an issue, then consider doing O/S for a few more months. Then maybe you will get lucky and find yourself menopausal. Keep in mind, my body had many more years of estrogen circulating...so for me, the decision to do O/S was easier.
I wish you well.
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VR--This is me. 46, now 47 at second diagnosis, just had a kid at 43, periods only started to wobble a bit this year, but are still monthly. Oncotype 20, tried chemo two weeks ago, had an allergic rxn to 5FU, and 2 MO's think OS plus AI is best for me now. Actually with my family history being heavy on strokes and heart attacks, maybe for that reason too. Mom had menopause age 57. Getting injections starting after Christmas.
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Sorry to hear about your second diagnosis and reaction to chemo Fourminor .
Thanks V for the info above .....very helpful as usual.
Any thoughts about the Zebra trial and the conclusion below
"Zoladex does not always cause permanent amenorrhea. In the ZEBRA trial, 68 of the 511 women on Zoladex had their periods return after they stopped treatment. However the researchers found that there was no difference in survival between the group of women who got their periods back and those who did not. (This was reported at the 2002 San Antonio Breast Cancer Conference.) " found on Susan Love web site http://dslrf.org/breastcancer/content.asp?L2=4&L3=5&SID=130&CID=421&PID=27&CATID=0
I really don't want to continue these shots and I guess i am trying damn hard to support my decision to stop .......so sorry for all the posts !!!
My sister who is 13 months older than me is in perimenopause so I may likely have reached it as well .
I feel my 18 months on these shots is enough for me. IF my period does come back ill re-evaluate things then.
Thank again ladies.
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fourminor...ditto here....sorry to hear that the chemo caused issues.....I hope you will do well with the O/S...BTW....my mom and sister didn't enter menopause until their late 50's. Approaching 90, I think my mom's hot flashes FINALLY quieted in the last few years! I can only imagine how much estrogen she had circulating in her body all these years!
Pooh...the Zebra study is encouraging, but unfortunately there is no marker for determining who is likely to enter menopause. Family history is probably the best indicator...
I think your approach is reasonable. It certainly would have nice if the SOFT study yielded significant evidence for all of us.....That said, I wish you well!!!
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its ok, my gut feeling was that chemo was a waste of time. I think in the future oncotype may split IDC and ILC as ILC has slightly lower rate of distant mets AND is less chemo responsive. Since it is not differentiated, oncotype is weighted towards IDC due to higher incidence. I felt more strongly about hormonal tx, but went along with it mainly to avoid future guilt. I was almost relieved by rxn because i felt my body was in agreement with me.
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Hi
Tarheel I have a quick question?
I have a local recurrence in my skin.
They are suggesting electron beam radiation. I had a Lumpectomy and Rads Tamoxifen / then arimadex and Lupron. First time.
Then Dec 2013 recurrence. Jan 2014 off with the breast and Chemotherapy and Herceptin.
Now skin recurrence in Oct. Just two months after chemo.
Pet scan neg.
So I was wondering if you had Radiation the first time?
I am so worried . I admire everyone's strength.
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PoohBear (and any others trying to make sense of the latest SOFT information) . . . I have been wondering about many of the same things that you have brought up. I was diagnosed at 40 with DCIS and stage 1 IDC, am currently 42 and have been on Zoladex and tamoxifen for almost two years (oh, and Zometa infusions every 6 months also). My oncotype was 16 and I did not have chemotherapy, although one out of four oncologists recommended it. So I, too, have been trying to make sense of the SOFT information in light of the fact that I could easily have been in the group that had chemotherapy, had I chosen to go that route. Does anyone know if they categorized the participants by whether they had mastectomies or lumpectomies? I didn't see anything pertaining to that in the paper that I read.
I recently went back to see my oncologist at The James cancer center at Ohio State (whose ovarian suppression treatment recommendation I ended up following). She said that based on the recent data, it would be reasonable for me to stop the Zoladex and continue tamoxifen for a total of 10 years or so (based on the fact that there wasn't a significant benefit of OS for the group that did not need chemotherapy; again, if you were like me and on the fence about chemo, then what does it all mean?). She said that If I was uncomfortable with that, I could continue the Zoladex for another year (total of 3 years, which was the original plan) and then continue just the tamoxifen by itself. Even though my ovaries were like "slivered almonds" at my last annual exam at my gyno, the oncologist said that it was reasonable to expect that, given my age, my periods could return after stopping the Zoladex. I don't know how everyone else on OS has handled it, but year 1 was much easier than year 2 for me. I would have expected the opposite. So on one hand I am happy about possibly stopping the injections. (The MO thinks that the majority of my symptoms are likely related to the zoladex.) But on the other hand, the thought of more estrogen circulating in my body scares me. When I weigh my quality of life vs. what benefit I am receiving from the OS, I'm not sure the OS is worth it. But I have 3 1/2 weeks to figure it out before my next injection
.Sorry for the long post, but wanted others to know they aren't alone in trying to figure all of this out! Ugh - I wish this was easier!
Happy New Year!
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You might consider having the Breast Cancer Index test done to see if you need extended endocrine therapy.
You can review the information for BCI at http://www.biotheranostics.com/wp-content/uploads/BTXBCI_149_BCI%20Updated%20CVA_v18_fnl.pdf.
The fact that caught my attention is over 50% of recurrences happen after the 5th year and 4-5 % of women will benefit from extended endocrine therapy. This test may save lives. The statistic is similar to the 3-5% that can be helped by chemo.
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Aug....keep in mind that quote of 50% of recurrences occur after the 5th year is very misleading. Remember, for those patients who are stage 1 grade 1, the 5 and 10 year risk of recurrence is quite low to begin with. The landmark ATLAS study published in 2013 makes clear that point.
A simple example of how the numbers mislead...Generally, 30% of all early stage breast cancer patients (stages 1 and 2) relapse. So, let's say 50% of those patients are Stage 1...so at most 15% of stage 1 patients recur in the first 5 years...of those 15% who recur...33% are grade 1...so that is 5% of Stage 1 grade 1 recurring at 5 years....Using those numbers, which are very general at best...and applying the same figures to 10 years, a 50% reduction comes down to 2.5% of patients recurring. Remember...that 2.5% number of recurring patients is even smaller than the cohort at 5 years....because all of those who recurred at 5 years are NOT included in the 10 year cohort...
http://www.medscape.com/viewarticle/775683
So that overall 10 year benefit is extremely small for US. At best for every 100 Stage 1 Grade 1 who do endocrine therapy for 10 years...1 or 2 patients will be spared a recurrence.
That said, I think over the next few years we are going to see more and more tests based on prospective studies, like the BCI score,that will be able to better pinpoint who is a candidate for longer periods of endocrine therapy.
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does anyone know how long its safe to stay on zoladex? I just started a new job and cant take a month off for ovary removal so I need to stay on the shots. I have been on about 2 years
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rozem...no one knows! However, if you carefully look at the SOFT trial, it appears that the study patients did O/S for 5 years.
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