Stage 1, grade 1 and pre-menopausal
Comments
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Sherry... For patients under 40, there was no benefit of taking Zometa according to the Gnant study along with O/S.
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I don't have a copy of my report, but will ask for it... just going on what the MO told me over the phone.
It's my understanding the the recurrence rate takes into account several factors - including age, tumor size, grade, etc; so two people with the same Oncotype score might have differing recurrence rates due to these other factors. But, gives me another question to ask.
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Kaybee... No. The oncotypedx recurrence score is strictly based on the genetic makeup of the tumor.
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Kaybee I can tell you my story, it might help.
The tumor my breast grew was 18mm, grade 1 (tube 1, nuclear 2, mitotic 1) and I had a surprise micromet in the first node (.6mm)
I did not have oncotype testing done but did have ki67, which I believe is part of the oncotype test.
I consulted the two top oncologists in the country and they agreed on the decision to give me a short dose of chemo. I have just finished 4 rounds of AC. They both agreed that adding a taxane was unnecessary and maybe would give me 1%, if anything.
Now the reason for chemo was the ki67 of 18%. Had it been at 14,I would likely have not been given chemo.
Both oncologists stressed that chemo is less likely to work on grade 1 cancers.
Here's where they disagreed
Oncologist one gave me a no recurrence rate of 80%, plus chemo 4, plus tamoxifen 4/5 giving me a total of about 89% likely to be cured.
Oncologist two gave me a 90%, plus chemo 3 plus tamoxifen 3 giving me 96% cured!
I don't know if you can get into your oncotype and look at the ki67 but that's one of the assays tested in there, and may help you decide.
VR that's great news, you must be pleased
I have booked my mastectomy for April 15, I am doing that INSTEAD of radiation. I thought it was what I wanted but now I've realised I just want for my breast to have never grown cancer in the first place, and I want my hair to grow back
Hope everyone is well.
Xx kk0 -
Kiwi....I don't want to second guess your decision to have a mastectomy. I just would like to make you aware, if you aren't already, about this recent study that was published a month or two ago that caused a FRENZY. It seems, according to this study that early stage patients who had the choice of lumpectomy and radiation vs mastectomy, the patients who did lumpectomy AND radiation had better long term survival than those who had mastectomies:
There are many limitations to the study. Furthermore, I think the reason why the study was conducted was because physicians saw an uptick in the number of patients requesting mastectomies and BMX. They wanted to confirm that doing the lumpectomy with radiation was comparable to mastectomy. The results of the study surprised many clinicians and patients...especially sisters here at bco....
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Hi everyone,
My stage 1b grade 1 (micromet in 1 of 3 sentinal nodes) was upped to 2a when another node with 5mm was found during ALND at the BMX I had after 2 lumpectomies. My oncotype was 4, and I got 4 MO opinions on chemo. 3 felt it would be of no benefit with the very low oncotype and being very strongly ER/PR positive with ki67 < 5. The one that did recommend chemo spent ony a few minutes with me and said he felt that the oncotype shouldn't have even been done. It was a very tough decision...but I ended up going with the three no chemo opinions. One of the most compelling reasons was the comment by one of the MOs about the European approach. It seems there is a thought process that any benefit shown to Luminal A's is likely due to chemotherapys effect on the ovaries, shutting them down. So they are more likely to do ovarian suppression/tamoxifen or AI than chemo in Luminal A's. Here is an interesting recap of the consensus of the last St. Gallen conference:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3100376/
There is another conference this week and I am interested in reading what comes out of that.
Another concern i had was putting off the tamoxifen which everyone agrees would give me great benefit to do months of chemo which is unlikely to benefit me. Itnhas already been 6 months since imwas diagnosed! Getting through 3 surgeries, healing issues and 2 infections took this long. I have started Tamoxifen and will be doing ovarian suppression soon. And, although I was in the gray area for radiaton, after considering the study that voracious mentioned, as well as some of the newer thoughts on radiating after mastectomy for even 1-3 positive nodes, I decided to go ahead with the radiation. I'm not crazy about the idea, but I do think it will be beneficial. And both RO and MO say I should do the tamoxifen right away, even through rads, since it has been so long since diagnosis.
I plan to be as aggressive with hormonal treatment as I can, remaining on suppression and removing the ovaries if necessary. I will take hormonal therapy for 10 years or longer! I am convinced this Is where my greatest benefit lies.0 -
Wow 11mom that's really interesting about your alnd after snb, you're lucky they did that and you got the cancer out. My snb also showed a micromet in the first node, the MRI looked like there may have been something in the first node, and sure enough. I'm worried I need the alnd but it's not necessary according to my surgeon and oncologist. Your story would say something different wouldn't it. I guess there's always an exception and I just need to trust my surgeon.
Vr that's an interesting study. My concern with my breast is that I knew something was going on 4 years ago. I had a mammo and an us which both showed nothing. This time, the mammo did not detect the 18mm tumor and none of the tests, not even the MRI, detected the 4mm of dcis. My concern if for my long term anxiety, I do not trust the tests and I would never feel secure with the tissue that caused the cancer still attached to my body. I'm also only 34 and have no faith in the long term effects of radiation. Thank you for letting me know that though, I have spent 4 months agonising over this and my gut says no to rads. I'm not pro mx, I'm anti rads. Hopefully ill never have to find out why
Xx kk0 -
Kiwi- no one really expected that other node. Just lucky I guess. :-) I think my situation is unusual. And I was told that ALND was still the standard of care for mastectomy with a micromet, at least in the US, but I think the thinking is changing on that. That second node did seem to put the radiation after mastectomy issue back on the table, though!
I chose bi-lateral mastectomy for the same reasons you did. Imaging has failed me as well. When I go to the cancer section of the hospital that I had surgery at, I walk right by the breast imaging center where I had previously had my imaging. I know I would have had tremendous anxiety having to go back there.0 -
This thread has helped me to understand how different the issues are for those who are stage 1, grade 1 and premeno compared to being stage 1, grade 3 and premeno. I had been puzzled as to why my perspective was so much different! (I went back through all 26 pages and realized there are no HER2+++'s like me here, and realized none of us who were HER2+++ turned out to be grade 1.) This thread is a discussion between those who are almost all under the age of 50, and the vast majority of posts are by those who are within the first few years of dx, so there is far less of a longterm perspective.
(VR, I think those factors too are key to the discussions we've had on various threads.)
Anyway, I will share one more concept I feel very strongly about regardless of our differences.
It is very irritating that metabolic and endocrine issues are so clearly part of the breast cancer picture, yet breast cancer patients are not evaluated carefully and fully by any endocrine specialist at time of diagnosis who is fully educated about the many aspects of the treatments that are planned for us, so that we are monitored and advised metabolically in a really thorough way all through treatment and afterward. Instead our evaluation is done almost exclusively by surgeons, oncologists, and radiologists, who have little training or comprehension of the metabolic understanding to keep in perspective as we go along, and who then pretty much bow out, leaving us metabolically changed toward the very different level of menopause, to fend for ourselves.
Barring a breakthrough that ties all of the pieces together, I don't see much likelihood of achieving better results for the group of all bc patients.
Sharing our successes and failures in the meantime does make a difference in our lives.
A.A.
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VR you are correct but I am glad that I was a good candidate for the Zometa.
Kaybee the other thing to consider as someone else has said is to check what your KI67 is. Mine was less than 10% so that again swayed me to not do chemo. But you have to look at all the factors and your age.
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Kiwikid I agree when there are equivalent options you have to go with your gut instinct!
11mom what a diagnostic journey you have gone through! Glad you have reached a decision that you are happy with. I am sure your aggressive hormone therapy approach will be as good as chemox for your lazy tumour!
Imaging failed me too and initially missed one of my cancers. When there is multifocal disease lumpectomy is not really an option.
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Diagnostic mammogram missed my mucinous tumor. Sonogram found it. MRI found a drop of DCIS next to the mucinous tumor....Still went ahead with lumpectomy and radiation. At the 3 year mark from diagnosis...I've now been moved to annual mammograms and will continue having sonograms every six months for many years (hopefully) to come.....
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AA you are so right about the fact that many BC patients absolutely have a heap of endocrine issues which are integral to diagnosis, treatment, quality of life and outcome, yet few women with BC are referred to an endocrinologist.
There is a sub specialty of endocrinology called "late effects" which focusses on the late endocrine related effects of cancer therapy in cancer survivors. However most of the research in this field is related to childhood malignant brain tumour and leukaemia survivors who have growth and puberty issues or XRT or chemo damage to one or more of the hormone glands. Nonetheless in centres where the sub specialty is available women with BC can be treated and I am sure their quality of life outcomes are improved by this input. but I don't think there is much research data on quality of life outcome in BC. This is probably because most BC research to date has been targeted at improving long term survival (which was very poor until only a decade or 2 ago). Maybe this will be the next stage of BC research. I worked on a breast cancer ward in 1992-93 and at that time virtually no young pre-menopausal women with BC lived long enough to be called a cancer survivor! As long term survival becomes excellent the focus on quality of life becomes more relevant!
I had the privelidge of having sub specialty training in late effects and worked in a cancer hospital specialising in this for several years before my own diagnosis of BC. I now work in a large general teaching hospital but still look after many women who suffer undesirable endocrine consequences of treatment and I encourage my oncology and BC specialist colleagues to refer patients who need endocrine related help. However referrals tend to be hit and miss and generally driven by the "patient" rather than the doctor. Certainly my knowledge helped me to tolerate all my hormone treatment with little difficulty!
I share your hope that the field of late endocrine effects of BC becomes an emerging field in the near future!0 -
Ah DCIS is different ball game!
I had 2 IDCs in different sides of my breast and I am so petite that by the time the BS would have been through dissecting, it would have been virtually a mx anyway0 -
Annice, yes it has been a long journey, starting rads next week and relieved to finally move forward with a treatment plan. Also, I found your endocrine comments interesting. I'm also a thyroid cancer survivor ( 20 years ago and much easier to deal with than BC!).0 -
Thanks, annicemd, for that support. I do think late effects are starting to be recognized, at least at a few of the major cancer centers. I know there has been/is a program in San Francisco, for example. I remind myself that after all, adjuvant treatment hasn't been around all that long so we haven't had many long-term survivors around, as you indicated. And given that the majority of bc patients diagnosed are over the age of 55 combined with the baby boomer generation now growing, and the difference in assertiveness among so many of that generation, and more female physicians in place for them to talk to, it is only a matter of time before their concerns are better recognized and addressed.
I am very happy that metformin trials are in progress. I am sorry that in trying to participate, I was considered "too far out from dx and tx" to join in personally. I am also delighted that it was a female Canadian doctor who applied observations about patients with diabetes who were taking metformin and seemed to have a lesser rate of cancer, in going forward with trials.
I think the studies at Jefferson by Dr. Lisanti with metformin also point toward a possible future in using metabolic scientific principles to help avoid cancer.
I hope that someday, having trials that provide evidence for metabolic management as preventative actions against cancer might be done to demonstrate the importance of understanding what to eat and what to avoid or limit, such as in terms of the types of fats, now that we understand a little more about omega-3s and omega-6s.
It is just hard to be patient.
A.A.
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Here's IMHO the future of medicine! As most of you know I refer to Dr. Eric Topol's The Creative Destruction of Medicine at every opportunity! Here's a youtube interview with him discussing a few of the concepts from his book for Brian Williams of NBC:
http://www.youtube.com/watch?v=0B-jUOOrtks
I highly encourage EVERYONE to read the book!
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You all might be interested in this video from MIT as well:
http://www.popsci.com/technology/article/2013-02/watch-babys-face-change-color-her-pulse
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I have my MO appointment this afternoon--finally. I am almost 3 weeks post-BMX. One of my questions will be about how my pre-op and post-op pathology could be so different. I have decided to get a second opinion on the pathology, just to be sure, because the post-op pathology would probably mean no chemo, and the pre-op path would suggest chemo. I just want to make sure nothing is being missed.
What a stressful process this is! But I am grateful I have learned to advocate for myself. (I believe this is one of the perks of getting older :0).
Have a wonderful day, all. I'll report back after my MO appointment.0 -
BeHereNow - the second opinion is not a bad idea. I did the same thing. In fact, I sought 4 MO opinions, and had the 4th one go ahead with an independent pathology report (they took the slides and did their own pathology report). I was getting anxious, thinking that I was delaying my treatment, but it gave me the information I needed to make a sound decision. Good lluck, and let us know what your MO says.
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Thanks, Min937. I'm so glad you were able to come to a decision you are comfortable with.
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voraciousreade, I saw Dr. Topol on The Colbert Report; guess he's making the rounds with his book.
I got an 11 oncotype score, so that does put me in good shape of not needing chemo, but won't find out for sure until I meet w/BS and MO next week.
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Renee... Congrats on the low OncotypeDx score! BTW.. DR. Topol's book was published in early 2012 and is first NOW gaining traction.... I hope the book will be read by the mainstream. The OncotypeDx test is mentioned in the book...
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VR I am going to get Dr Topols book sounds v good, just need to find some time to read it
Renee happy dance for your good news0 -
I got the word--no chemo. Would only reduce recurrence chance 2-3%, so MO said SE and risks outweigh any benefit. I think I read similar comments on this thread: She said one of the benefits that chemo would have on me (pre-menopausal) is chemopause--stopping my periods, so instead she started me on Zoladex (monthly shot in my belly) to shut down my ovaries. In addition, I will start Tamoxifen next month--be on that for 5 years, and then on an AI 5 years after that. She also will put me on Zometa (every three months), which helps with bone density, and studies are showing that there's additional benefit (contribution?) to reducing recurrence.
When I asked my MO about longer term, where will I be with all of this, she was optimistic. On top of me being statistically in good shape, she said I'd be on these estrogen suppressing treatments for the next 10 years, and 10 years from now we'll have that much more information about BC treatments.
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Renee, great to hear that you can move on to ovarian ablation, and not have to spend months of time and energy and money dealing with chemo, or have to deal with the SE's from it and all the appointments and labs and support drugs that go with it....
VR, I haven't read Topol's book as yet but have read the reviews and comments about it. In developed countries we are all dealing with the electronic/digital age and I get it that when it works, it can save time for medical analysis and application on an individual basis once the work has been completed to determine better treatments appropriate for individual characteristics. But I don't see anything to indicate that the digitalization Topol is advocating is going to be used to discover or design better treatments to apply.
???
A.A.
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Renee so glad you have a plan and have been spared of chemo. Did your medical team say how long you would have ovarian suppression for? You seem to have same treatment regimen as me. I agree with everything that your doctor has told you
Hugs
Annice0 -
Renee....I am pleased to hear that you have an active treatment plan that you are comfortable with! Yay!!! Just curious why you are going to receive Zometa every three months. I received 6 Zometa infusions over three years...(every 6 months):
I wish you well!
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I am not sure Annice--I need to ask for clarification. I heard 3 years, but not sure if that was the Zometa or Zoladex. (It was a LONG afternoon. She did a great job walking me through/explaining everything, and looked carefully at my stats and reports, so I feel confidence she is in tune with me.)
She also wants me to take calcium and Vitamin D supplements. I asked about nutrition--she said they will cover that more fully (and I'll have access to support, if needed) after these treatments are initiated (so in a couple of months), but to minimize soy intake (no need to eliminate; not an issue for me, in any case), and keep my alcohol intake down to no more than 3 drinks/week. (Boo! There goes a glass of red wine in the evenings [well most].)
BTW, she logged on to this site to show me how I would fare w/various treatments: http://www.adjuvantonline.com/index.jsp
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AA....Every review, comment and video that I saw regarding Dr. Topol's book was DUMBED DOWN! You need to read the book! And keep in mind, some of what he discusses in the book is already occurring. Likewise, he is a VISIONARY and is telling us what we SHOULD expect to happen in medicine in the not too distant future. I GET where he is GOING and I'm in for the ride!!!!! Read the book and come on board!!! In fact, one of the the first ideas that he discusses is that "The Creative Destruction of Medicine" will begin with a REVOLUTION created by the patients! It will begin from the bottom, the patients, and move up towards the physicians...quite amazing ideas....
Several weeks ago, the DH had an appointment with one of his cardiologists. I asked him if he had finally gotten around to reading Dr. Topol's book. He said that several of his colleagues had recommended the book and that not only had he finally read it, he just got back from a conference in New Orleans where Dr. Topol gave the keynote address. The conference had to do with medicine and technology. I asked him what kind of reception did Dr. Topol receive. He said, "He rocked the house, naturally. He is a rock star and a visionary."
Yep!
Now...AA getting back to designing new treatments based on what Dr. Topol discusses....He devotes a chapter to all of the inroads made in cancer research using technology. He mentions Herceptin. He mentions genetic screening, BRCA....He mentions the OncotypeDX test. We are on the cusp of the creative destruction of medicine and on our way to a new beginning. This reminds me of when the ancients discovered astronomy and used technology to create a calendar which ultimately led to a new world order. That's what this book is all about...discovering how technology can and will create an innovative way of diagnosing and treating illness....
Annice....Don't miss reading his book! And if you enjoy it...please pass it on to your friends and colleagues.....I think the book is especially important for endocrinologists! The DH was hospitalized last week and this lovely dietician intern sat with us for days, during his hospital stay. She was interested in making a presentation on the DH's rare disorder. I showed her Dr. Topol's interview with Brian Williams on NBC's Rock Center. I reminded her that the segment was dumbed down...but she could get an idea of what to expect in endocrinology in the next decade. She was so excited after viewing the segment with me!
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