Why Im Not Doing Chemo
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rosieo - sounds like you are in good shape then! Good that you asked for the oncotype - does not sound like you would benefit from chemo, and negative nodes/clean margins is great. Do you plan on no recon? I am assuming that you had a breast cancer in the right side 15 years ago, and I am curious - were your hormonal receptors the same for both? I elected a BMX even though I only had a mass on the right. Pathology showed issues with the left as well so it was a good decision for me.
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Hi Special
Well I have no idea because 15 years ago I only accepted anything the dr's said. We did not have this type of interaction. Back then it was 1.2 centimeters, 1 lymph node but I don't recall out of how many. I had no chemo or radiation ( No radiation because of my radiation treatements 16 years before the bc, for Hodgkins) I also took Tamoxifen for 5 years.
According to medical knowledge, anyone who has had Hodgkins in their younger years is very prone to getting breast cancer. Confirmed by my oncologist. So I guess that is the reason I am a double breast cancer person.
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rosieo - I had heard that about Hodgkins - and you are not the only one here on BCO who has had it and BC. If you took Tamoxifen you were most likely ER+ for that first one. I am always curious when someone has a second primary, as opposed to a recurrence, if the make up of the cancer is the same or different.
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Special
I don't know. How can I find out if the cancer is the same or different. I know that the Dr said it was a new cancer not metastic.
Thanks for all your input.
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rosieo - your pathology report from your original mastectomy on the right should have your receptor info. Are you with the same oncologist, or do you have those records? This new cancer would be a new primary - not a metastasis, and your current path should show whether this mass is estrogen receptor pos/neg and progesterone pos/neg, as well as Her2neu status.
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Special
I have the same oncologist. Yes this cancer is a new primary, I asked about that. I will check with him as to the estrogen and progesterone and Her2 although I am not going back to him for 6 months. But I am going to my BS tomorrow, maybe he will have that info.
I will post that
Thanks again
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rosieo - have a good appt. tomorrow!
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Denise, I also had an oncologist who wanted me to do chemo and AIs or Tamox even though I had to fight for the OncotypeDX test ... score of 0. This oncologist fought me for more than a month on having the test....ultimately said "I don't want to be sued in 20 yrs for not recommending chemo." Who sues an oncologist after they live another 20 yrs???? So here I was with a score of "0" aggressiveness and this yahoo wanted me to do chemo????? Then after the score, this onco said I should do Tamox because that is what the Oncotype assumes...but then the oncologist refused to order the CYP2D6 test and I had to go to my surgeon to get the test which showed that I am missing one of the alleles on the gene and therefore am at best an intermediate metabolizer. I didn't want to take Tamox anyway so this just gave me the excuse I was seeking.
The stupid part about all this is : If the oncologist had been up to date on the NCCN guidelines which had been updated 6 months prior, he/she should have PUSHED ME to have the OncotypeDX test. I only knew about this test because of another BC survivor who told me her oncologist at Shands in Gainesville FL told her she needed to have it. She had a score of 16 and her oncologist told her YAY, you don't need chemo. And, here I had one pushing chemo on me with a score of O !!!!
EVERYONE DO YOUR RESEARCH !!!!!!!!!!!!!!!
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And THIS is why I don't trust oncologists.
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I can honestly say that overall I've had good results from my RO's and MO's. I've had to probe and let them know that I have read all the studies and expect to hear all my options. I overheard my BS say to the RO at the breast clinic I attended "Watch this lady...she's prepared". I took that as a compliment...lol. Can't say what would have happened if I had gone in with "blind faith".
What I didn't like was the fact that one of the top cancer centers went along with my idea of doing a rads treatment "off protocol" and then gave me the runaround after I was scanned, trying to switch me to a more conventional longer treatment. I didn't take the bait, because I resuse to be "overtreated" for a bc that is small and slow to recurr and advance. As a result, I'm not having any rads, which puts me in a slightly higher risk category, but one that I'm prepared to take to protect my body in the long term.
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And I trust my oncolgis. I have known him a long time and his reccomendation was spot on with the Oncotype. It was still done at that point for HER2+ because nobody connected the dots and said HR2+ always needs chemo so why do the test, But it was one more thing that gave me confidence in my onc. I would not blindly follow him. I took myself off AIs after trying them all because of the side effects and he was okay with that.
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I'd feel a LOT safer with the whole breast cancer diagnosis/treatment process if we each had someone with professional training in endocrinology authorized to advise on an equal level with our other specialists. Without that, each specialty advises about surgery, radiation, and chemical manipulation of us and our cancer and there is no one there at all with a whole-body perspective that has any say about the big picture.
A.A.
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I see I am not the only one who had to fight for the Onco test. I wonder how common that really is.
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I asked for it right out of the box, so I don't know whether it would have been offered. When I told the breast care coordinator I wasn't going to do chemo, she said "then you don't want the oncotype test"..I said yes...I do, so that I know my risks.
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Luna
What is a CYP2D6 test? Can you explain " missing one of the allelas on the gene and are therefore an intermidiate metabolizer."
Thanks
Rosieo
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Rosieo: Good question...I wondered that myself and wrote it down...it is one test I was not offered prior to going on the hormonal therapy.
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Kaara
Yes waiting to hear from Luna. Maybe I can take that test and will not have to take this Arimidex which I really do not want to do.
Rosieo
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ladies - tried to post a link. Having trouble! Go to www.dslrf.org, type in CYP2D6 in the search box, go to the last item #5 and click on the recurrence specific one. It takes you to the thing I was trying to link.
There is also an extensive list of drugs that inhibit Tamoxifen because of interference with metabolization and this enzyme.
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http://www.onclive.com/publications/obtn/2011/march-2011/the-final-word-on-cyp2d6-testing-and-tamoxifen
"The Final Word on CYP2D6 Testing and Tamoxifen?
Author: Jason M.
BroderickCYP2D6 phenotype status does not predict tamoxifen efficacy in patients with
early-stage breast cancer, according to a retrospective analysis of data from
the Breast International Group (BIG) 1-98 trial1 presented at SABCS.
Freya R. Schnabel, MD, professor of surgery, NYU School of Medicine, discussed
the findings at the JTCC's SABCS review. Based on the negative results, Schnabel
believes there is no current justification for CYP2D6 pharmacogenetic testing
prior to administering tamoxifen.CYP2D6 is involved in the formation of endoxifen, a metabolite linked to
tamoxifen's efficacy. Previous research, including Schroth et al2,
had suggested an association between lower CYP2D6 activity and worse clinical
outcomes with tamoxifen treatment. Schnabel admitted the data had been
convincing. "I was very sold on the idea that CYP2D6 profiling would be
important in the consideration of women who were going to take tamoxifen for
chemoprevention," she told conference attendees. However, subsequent research,
including the BIG 1-98 retrospective analysis, altered Schnabel's opinion.The BIG 1-98 trial examined tamoxifen and letrozole1 administered
alone and sequentially as adjuvant treatment in 8010 postmenopausal women with
early-stage, endocrine-responsive breast cancer. At SABCS, Brian Leyland-Jones,
MD, PhD, professor of medicine at Emory University, in Atlanta, presented data
from a subanalysis of 2675 BIG 1-98 patients who had received monotherapy with
either tamoxifen or letrozole.1 The patients were genotyped for
CYP2D6 and categorized as poor, intermediate, or extensive metabolizers. The
primary endpoint was breast cancer-free survival.The researchers discovered no association between CYP2D6 status and breast
cancer-free survival. Defying expectations, clinical outcomes were not worse in
poor and intermediate metabolizers than in extensive metabolizers. Previous
chemotherapy treatment was also not a factor. The results suggest CYP2D6
genotyping will provide no indication of tamoxifen's potential
effectiveness.The study also investigated whether CYP2D6 phenotypes associated with reduced
enzyme activity produced fewer hot flashes, a common side effect of tamoxifen.
It has been theorized that lower enzyme activity would reduce tamoxifen's
activity, and thus lower the incidence of its side effects, including hot
flashes. However, the BIG 1-98 subanalysis results showed no association between
hot flash occurrence and metabolizer status. Hot flashes occurred in poor,
intermediate, and extensive metabolizers at rates of 48%, 49%, and 42%,
respectively. Based on these statistically insignificant differences, the study
concluded that hot flash incidence should not be a marker of tamoxifen
efficacy.The negative results of Leyland- Jones et al's study, along with the similar
outcome of Rae et al's3 retrospective analyses presented at SABCS,
have established a convincing argument against CYP2D6 genotyping prior to
tamoxifen administration. The CYP2D6 controversy will likely continue, however,
until the completion of prospective analyses such as the Eastern Cooperative
Oncology Group's ongoing E3108 study (http://bit.ly/ i39SJc).For her part, Schnabel has doubts that the prospective trials will shift the
pendulum back toward testing. "Prospective trials are critical, but the data
presented by Dr Rae and Dr Leyland- Jones were compelling. I will await the
results of these trials with interest, but I am now a bit skeptical, and the
proof will have to be very strong to influence practice in favor of
testing.""References
- Leyland-Jones B, Regan MM, Bouzk M, et al. Outcome according to CYP2D6
genotype among postmenopausal women with endocrineresponsive early invasive
breast cancer randomized in the BIG 1-98 trial. Presented at: 33rd Annual San
Antonio Breast Cancer Symposium; December 9-12, 2010; San Antonio, TX. - Schroth W, Goetz MP, Hamann U, et al. Association between CYP2D6
polymorphisms and outcomes among women with early stage breast cancer treated
with tamoxifen. JAMA. 2009;302(13):1429-1436. - Rae JM, Drury S, Hayes DF, et al. Lack of correlation between gene variants
in tamoxifen metabolizing enzymes with primary endpoints in the ATAC trial.
Presented at: 33rd Annual San Antonio Breast Cancer Symposium; December 9-12,
2010; San Antonio, TX.
0 - Leyland-Jones B, Regan MM, Bouzk M, et al. Outcome according to CYP2D6
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I had my second vitamin infusion today and it went well. I took a little nap while it was being done...it took about an hour in total. At the very end, the tech gave me a large boost of glutathione, a super antioxidant.
I'm reading Dr. Christine Horner's book "Waking The Warrior Goddess" It's about how diet and lifestyle can play a huge part in keeping our bodies healthy. I admire this doctor because she is the one responsible for women being able to get reconstructive surgery after mastectomys. There was a time in the 90's when insurance companies decided that they were no longer going to pay for something that had no "real purpose" in the body. Can you imagine? I listened to an interview that Dr. Mercola did with her and was impressed. She doesn't advocate giving up conventional treatment but rather combining with complementary to have a better prognosis.
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I have just had a BMX on Feb. 1st. No nodes involved as you can see from my diagnosis. My BS recommended chemo, HER2+ treatment and ER+ treatment - I am going to the oncologist a week from this Monday. I am researching like heck. I am 66 years old and my only child (daughter) is getting married in June. I feel great now even though it has only been 1 1/2 weeks since my surgery. I will pose all my questions to the onc. but will not make any decision about any treatment until after my daughter's wedding. If I am cancer-free (which is bullshit) as my BS said, then waiting another few weeks for treatment will not matter. I am not going to let this happy time be ruined because of what an onc tells me. I am for now against any chemo treat to prevent this from reoccurring. The percentages are not high enough for me to destroy my body. I am on thyroid meds, high blood press. meds, chelosterol meds, anti-depressants for anxiety disorder and I feel good. We trully only have today and I am making the most of it and the most of this happy time in my life. All I am doing for now is looking for a very expensive prosthethic (chose not to reconstruct). I want to look beautiful and happy and healthy on my daughter's wedding day....conventional treatment from what I can see, especially chemo which I am opposed to...it destroying my natural immune system, is not perfected. People are still getting BC and dying after the five year mark (Lynn Redgrave for one)...All this is buying some time and maybe not even, but what I do know is that chemo destroys the good cells also which we need to fight cancer in our bodies naturally...Evebarry - Big Hugs to You for starting this forum - You do what is best for you -
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barbiecorn: I'm glad your surgery went well and you are on the road to recovery. I am not in a position to advise you on your bc HER2+ treatment options. I know it is more agressive than the HR/PR+ bc, and so the treatment options are different. One thing I can say is that diet and lifestyle changes should be the first line of defense against recurrence. If you are going to forego chemo, then this is an absolute must as an alternative, along with getting advice from an integrative doctor or a naturopath on alternative therapies.
What you absolutely must do is research on your type of bc and listen to the opinions of the MO's as well. You will then be in a position to make the choice for treatment that is right and feels best for you.
It is good that you have your daughter's wedding to look forward to. What a special time in both of your lives!
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Barbiecorn, Will your onc start you on chemo after your daughter's wedding? Usually, they won't start you more than 12 weeks after surgery. I don't know - I think that delaying or not doing chemo is really risky, given your diagnosis. Her2 changes everything - it's just so aggressive. Will your onc start you on Herceptin alone? If you don't do chemo, then please don't rely just on diet/lifestyle - you will need to supplement with several different alternative strategies, which will largely be expensive and will not be covered by insurance. (For the record, I believe that diet/lifestyle should be in the first line of defense, but it is not enough alone.)
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CYP2D6 is the gene many, many drugs use as a "pathway" (I am no scientist just read and read and read). There is a full 3 column list of drugs designed to "use" the CYP2D6 like all the Beta Blockers, Benedril, etc. This explains why a drug may work for some and not for others. I finally thought to check the blood pressure med I used to be on and sure enough it also uses the CYP2D6 gene. No wonder it didn't work. Mentioned to my med school daughter that if I decide to ever try one again I need my doc to prescribe one that doesn't use the CYP2D6 and she said, "Good Luck with Tthat." Orignially my Oncologist wanted me on AIs because I am well past menopause and only pushed the Tamox after the OncotypeDX result. It took me so long to beg and beg for the test, that I had time to learn about the CYP2D6 test from the lovely ladies on these threads. My test results say "Intermediate Metabolizer". Some women on these threads have reported that when they have the same result, their oncologist doubles their dosage of Tamox. My oncologist's contention that "Tamoxifen works for everyone" simply isn't true. At least from everything I have read, if a person is missing both alleles, they are a "poor metabolizer" and would be having the side effects for no purpose. I do not know if there are other alleles on this gene and these two are the ones that matter or if there are only 2 alleles on the gene. I will try to remember to ask my daughter. I did not want to take Tamox anyway because of all the stuff I had read and the "fact?" that sometimes the cancer cells adapt and crave Tamox as nourishment (sorry, don't know how factual that is).
As for Aromatase Inhibitors ... I will always contend that it is wrong for these docs to hand out AIs like candy to post menopausal women without any idea of what their estrogen levels are. (pre-menopausal estrogens fluctuate through the cycle) I have used many aromatase inhibiting supplements like DIM, I3C, Quercetin, Calcium D-Glucarate, ETc, Etc and avoid all estrogen filled dairy and other foods and have gotten my estradiol down to 5 which is about the same as a 5 yr old and my estrone down to 30s and 40s which is well below the 100 level my doc wants me below. So I have no need for AIs, yet my ex-oncologist would never have worked with me on this. When they were drawing blood, I asked if they could check my D3 level and they said "No, we only check for things that pertain to cancer." sheesh! My level was 22 and needs to be well above 60.
I found a great doc to monitor my hormones who is also a compounding pharmacist so I also buy bio identicals from his pharmacy next door. I looked for him because of all I had read on the importance of progesterone. From my research, progesterone is necessary for your body to have Natural Killer Cells. I had almost no progesterone. I learned a lot from the ladies posting on Natural Girls in late 2008 and all of 2009. I was lucky that a couple of them had almost my same diagnosis and were researching night and day and sharing what they found just as I was doing the same. But, I still spent the better part of 2 years using all my spare time on google. That is also how I came across the "out there" folks who believe all root canal teeth harbor bacteria. And, after infection after infection removed a tooth that 3 levels of dental professionals that I know and like and respect all recommended against. Voila! No more infections in my reconstruction. From April 2009 to Mar 2010, I had 9 surgeries. I was willing to lose a tooth if it might stop this. My doc's PA joked that she was surprised I could remember my own name after all that anesthesia.
Sorry, I know this is wordy. Got off on a tangent. Apologies:)
RESEARCH til your brain hurts! Then decide for yourself.
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voraciousreader ... is there a more recent study on Tamoxifen than the one done 20 or 25 years ago? If you know of one, please post the link because I can't find one.
The old one is the only one I know of and it said that 1 in 100 women would survive 5 years without Tamoxifen and 2 in 100 women would survive 5 years with Tamoxifen. They called this a 50% improvement of a woman's 5 yr survival.
So, this means 98 out of 100 women take it for no benefit. To me that is a 2% benefit.
I've already chosen not to take it, but for everyone else looking at their own picture, I sure hope there is more recent research proving that it made a difference.
So, I would love to read about it if anyone knows of a newer study.
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Luna...I think you are confusing relative risk and absolute risk. Furthermore, you need to understand relative risk and absolute risk in individual terms as well.
I see you had an OncotypeDX score of 0. You must be delighted. Do you have your OncotypeDX report? I would be interested to hear what the report says because the OncotypeDX test score assumes you are doing Tamoxifen therapy. With a score of "0" I wonder what the report says your risk of recurrence is.
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My oncotype score was 9 but that was assuming I would be taking Femara which I'm not. Not sure what that would change my score to.
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I guess if my oncologist won't start me on any treatment if I wait longer than 12 weeks, then I will look for another oncologist. My margins are clear, my nodes 0 - I cannot see why waiting another 5 weeks would make a difference for treatment. What if I was going for my first treatment and I got into a car accident and was in the hospital recouperating for 5 weeks, would my oncologist not treat me? I doubt it!!! Barbiecorn
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I think it's becauses the efficacy goes down if you wait more than 12 weeks, so why bother putting yourself through it if it isn't going to work.
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barbiecorn - why is there a conversation of chemo if you have LCIS, or was there an invasive component to your tumor?
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