Stage 1, grade 1 and pre-menopausal
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I agree VR, reading the book could make all the difference. In watching Topol being interviewed, he had the chance to respond to what in essence is my question and repeatedly missed the point (which is easy to do when one is in a very public situation and excited about many different aspects involved). So I am still questioning.
Being personally HER2+++ by HerCeptest, and having been tested personally for BRCA, I do have an understanding of the value of such testing -- but also have an understanding of the limitations of such testing that are still formidable. I am interested what inexpensive easy-to-accomplish suggestions he has to offer, and don't quite understand why that info so far seems to be so difficult to provide and bypassed in the presentations thus far. I'm not saying it isn't there. I'm asking. Which chapter were you recommending in particular? Don't give up, here. I'm just using critical thinking.
A.A.
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On a different train of thought....
I also have difficulty understanding why there is confusion among the experts in regard to HRT supplementation when it comes to progestins. It seems rather odd to me that the evaluation of HRT lumps together all forms of HRT as though they are identical in effect, when they are relying on and presenting as evidence studies that lump together clinical trial results that are for HRT that includes progestins -- as if ERT is not HRT. Why is it so difficult for them to be specific about ERT vs hormone replacement therapy that includes progestin when drawing conclusions about "HRT"?
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AA, not sure I understand the question you are asking about HRT. The summary link you include does not emphasise clearly that there are good data showing that estrogen only HRT is significantly safer than estrogen plus progesterone HRT. Its just that the biggest studies and largest numbers included women on combined HRT. Also mode of delivery relates to risk with transdermal being safer than oral. It is well established that HRT is associated with an increased risk of BC with duration of therapy and age also contributing to risk. Hope that answers your question.
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Hi annicemd,
The problem is the continuing (and somewhat biased) loose use of the initials "HRT" when no effort is made to clarify that the conclusions of the report have not been proven to refer to the use of "HRT" when estrogen is used alone as "HRT".
I know you are aware that there are lots of breast cancer patients who are dealing with VA as well as general bodily drying out that results from the use of cancer treatments, especially the combined treatment of chemo and either tamoxifen or an AI. These are humans who get relief with the use of "HRT" if they use low-dose estrogen "HRT" without progestin. There are a lot of women that can benefit from low dose ER that don't use it because of the risk of uterine cancer. These humans are afraid to use it because the report implies that "HRT" poses a higher risk for breast cancer patients. The report should at least be honest enough to admit and carefully distinguish that difference.
Perhaps they haven't had to personally suffer VA, dry eyes/poorer vision, dry ears/poorer hearing, dry skin, more hair loss, dry joints, early aging, etc.
A.A.
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Hi AA, there is much less information about estrogen only HRT in general because only women who have had a hysterectomy are eligiable to have this. Estrogen without combination with progesterone can induce endometrial hyperplasia and endometrial cancer. There are studies showing less risk of developing a new BC associated with those women treated with estrogen only HRT but there are no established safety data regarding estrogen therapy after BC. There are women who take HRT after BC because of severe menausal symptoms but they need to be counselled that their risk of recurrence is likely to be higher
BW
Annice0 -
Hi everyone, I just turned 51 years old (actual today), pre-menopausal and pretty much the same DX as a lot the women on this thread. I was invited to join this thread by voraciousreader and boy am I glad she did. I have not finished reading all the posts, but what I have read, I do believe this is where I belong, so I do thank you voraciousreader for reading my posts!
I do not know my final DX as I have not had my surgery yet. It is scheduled for 4-30. Right now the BS is saying my trtmt plan will be LX, RT and Tami for 5 years.
I will be taking notes from all the posts that I read or will be reading. So far the items that I am finding very interesting is the OncoType test, and the removal of the ovaries. I look forward to finishing the old posts and contributing to the new post. Have a great day ladies!
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Jude...I'm sorry to hear about your diagnosis... however....Welcome! ....and...Happy Birthday! Years from now, on your long journey through life, I hope you will be able to only look back briefly at the rough patch you went through at 51 and instead focus on how enriched and meaningful your life was both before and after your diagnosis!
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Jude123...Welcome and Happy Birthday.....
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http://www.medscape.com/viewarticle/768635
AA....check out the above link.
Then listen, if you haven't already to these other discussions:
http://www.medscape.com/features/public/creative-destruction-medicine
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Happy birthday Jude, and glad you joined us (wish you didn't have to, though).
VR-did you miss your calling as a dr?
Annice, how long will you be on Zoladex? And I know I asked this before, but why don't they just surgically remove our ovaries? This monthly shot business seems extreme in itself--I have to imagine the drug is expensive, so wouldn't it be more cost effective (and time efficient) to just remove the ovaries--for women like me, who are done with them?
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VR, I'm enthusiastic about some of the goals he talks about, such as using less rads, or such as getting rid of a system for drug testing that is stuck in the mud about comparing anything new by using as a standard measuring stick for adjuvant treatment something that does as lousy a job as chemotherapy does.
But I think it would take a lot more than just using video/audio contact with patients in place of in-person contact with a trained health care provider. If we are talking about substituting a lower-level trained health care provider to be there to handle that while the physician is "online" observing and advising, we already have that and are using that combination for patients in some circumstances now. However... paying for and supporting the media connections and the lower-level health care providers to be on-site, as well as having sophisticated analytical equipment on-site for the health care provider (or even the patient) to utilize remains idealistic even just for the more basic, non-critical care situations.
He talks about having that kind of set-up, but not concretely about how to bring it about in the broader population of multilingual, multicultural, multi-aged humans.
I can see where something that operates remotely and that monitors blood levels of drugs being tested would be more accurate than relying on patient cooperation, but I'm not sure the actual drug compliance behavior would change, to improve results.
A.A.
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AA.... You are missing the greater point... that is empowering patients with individualized information. Without a doubt patients will require a level of sophistication to acquire the information and then know how to use it in a constructive way with the help of their health care provider. Are there patients who will be non-compliant? Of course! However, we are already using smart technology in the field of endocrinology and cardiology. Are we going to leave patients and providers in the dust when they don't embrace these new technologies? Unfortunately, yes. But keep in mind, just like Dr. Topol discusses how the printing press revolutionized civilization and brought reading to the masses, today we still have illiteracy... But that doesn't stop the march towards progress! Same with technology! The generation that has followed ours are very technology sophisticated and connected. And with cell phone makers making cheaper and better smart phones with the purpose of getting them into the hands of developing countries, we are going to see innovation in medicine like we've never seen before. The global community is ripe for progress! With technology in the hands of patients, they will be able to take ownership of their well being. Instantly, they will be able to measure vital information about themselves and know what to do... Think diabetes. And getting back to those antiquated clinical trials... Genetic based trials will tell us who and how to treat! And one last thought... This vision really isn't a vision at all. Because what Dr. Topol describes is already occurring. The only question that needs answering is how rapidly will we move to this new model? Again, when you look at the sophistication of individuals a generation younger than us AND look at the generation 20 years younger than them, it is very plain to the naked eye to see how embracing of technology those generations are.
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VR, I admire the goal and the upbeat focus upon improving the status quo. And I agree that the younger generations are already much more integrated with mobile technology than my generation.... although they might have to stop texting for more than a few seconds at a time to get any health benefits from it...
I will suggest changing over to the research forum for this topic.
Thanks,
A.A.
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ReneeinOH - Like Annice, I agree with what your doctor told you. You have similar stats as me, and as you may have read in earlier posts, I started tamoxifen, zoladex and zometa in January. (zoladex every month, zometa every 6 months) Just curious - where are you receiving treatment in OH? I'm outside of Dayton, and ended up going to The James in Columbus for a second opinion. I ultimately went with that MO's opinion. I just ask because there aren't a lot of MO's prescribing the zoladex and zometa for pre-menopausal women. In fact, in my case, that MO was only one out of four who recommended it.
My MO said that removing the ovaries was a much harsher transition to menopause than going on the zoladex, so she didn't recommend it. I'm curious as to what Annice's doctor said. My only question is what is going to happen after three years on it, when I'll be 43, and could possibly still be pre-menopausal.
Mindy
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Mindy....Presently there is NO answer to what to do following three years of ovarian suppression. Hopefully, when the preliminary data on the SOFT trial is released later this year, clinicians MIGHT have a better idea as to what to do with our younger sisters like yourself who might still be premenopausal following treatment.
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Hi Mindy. I'm at the Stephanie Spielman CBC, which is part of the James (which I suspect is where you went). Dr. Ramaswamy is my MO.
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Renee - yes, that is where I went. Dr. Lustberg is who I saw, but a MO closer to me is administering my treatment. I plan to go back to Columbus for periodic follow-ups.
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VR thanks for all the info on Dr Topol it is fascinating and I am in for the ride. I am giving a lecture to general physicians in a few weeks and I will be spreading the word!
Renee, I have no answer for when to stop zoladex, I am waiting for results of the SOFT trial!
Jude, welcome and happy belated birthday
sorry you are here but happy you have found us.
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Min , my oncologist was generally open minded, my second opinion from the Royal Marsden thinks I should use tamoxifen alone and not zoladex at all. We are in a grey area where there are no clear answers at present. The SOFT trial will hopefully inform us as to whether we need to continue OS or not, but whatever the result I am glad I have suppressed my estrogen levels for a time. Feel slightly weird about the thought of becoming pre menopausal again if study results suggest no need to continue with OS!
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Hi Ladies, I hope you don't mind me hopping on this thread, even though I'm a Grade 2. I'm 33, and was diagnosed in January. I chose to have a bilateral MX because of my reconstruction decision, but also because I knew that I would not have a peace of mind about the other side in the future. My pre-op MRI showed an area of concern on my non-cancer side (right), but when biopsied, it was benign. My final surgical pathology report showed that my left side had IDC and DCIS, with 1.8cm, ER/PR+ (90%), Her2 negative, Grade 2, 0/3 nodes, with no LVI present. It was a complete surprise when they found 0.7cm of DCIS on my right side as well, with the same for the receptors. I had an Oncotype done of the IDC, and the score came back as an 8 (6% chance of distant recurrence). I knew this squarely put me in the gray area for chemo.
I had one oncologist meeting this morning and will have another one tomorrow as a second opinion. I knew that chemo might not be recommended, but when asked, she said she wouldn't even consider it for me. I then asked about ovarian suppression, and she also said that she would not recommend that, given that it is also some form of toxicity. Should I even be pushing for OS? I also am a bit uneasy about not throwing everything that medicine has to offer at this cancer, but am slowly wrapping my mind around that chemo is probably riskier than beneficial in my case (though I suspect that feeling won't ever go away unfortunately).
I'm just so confused right now with so many mixed feelings. Like everyone esle, on the one hand, I want to do everything possible to prevent recurrence of any kind. On the other hand, no chemo, and no OS as well? Has anyone had their MO not offer OS either?
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annicemd,
Thank you for the helpful explanation in trying to understand where things are with the question of HRT.
The net is that one is left wondering about the wisdom of using synthetic equine progesterone in the first place, and is also in the position of understanding that apparently it is acceptable to experiment for decades at a time by using the equine progesterone when combined with estrogen, yet it is not acceptable to experiment by using estrogen plus non-equine progesterone.
From the trials listed below, at least your side of the pond thought use of estrogen alone might be worthwhile, but almost a decade has passed without more information so I wonder what became of the studies:
NCT00079248Hormone Replacement Therapy in Relieving Menopausal Symptoms in Postmenopausal Women With Previous Stage I or Stage II Breast Cancer
It appears the Scandinavians also made some effort:
NCT00003771Hormone Replacement Therapy and the Risk of Breast Cancer Recurrence in Women With Previous Early Stage Breast CancerRemarkably I could not find any investigations giving genuine consideration by clinical trial to defining whether comparing the use of estrogen plus equine progesterone vs estrogen plus other forms of progesterone might provide some interesting results.A.A.0 -
Hi Cuetang,
Of course you are welcome, stage 1 grade 1 and stage 1 low oncotype are almost synonymous anyway! Sorry you are joining us at such a young age. Actually most of us here with similar stats have been offered tamoxifen alone with no chemo and no OS. Whilst the no chemo is logical, many of us have opted for OS because there is a general assumption that in ER positive disease it makes sense to suppress estrogen and MOs are usually happy to do this but there are no data yet as to how long to do this for and of course this is an issue for you because you are so young. There is a study underway and due to start publishing results in the next year called the SOFT study and hopefully it will answer these questions for us. Until then it's your call with the help of your medical team on what additional treatment if any to have
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AA I think it's generally difficult to recruit to these studies because most women with ER positive BC don't want to take estrogen in any form, in or out of a study. I suspect that's why no results have been forthcoming. However there are small numbers of women with BC who take HRT for symptomatic benefit. They are counselled on the risks which are clear. In an informed individual this is a choice but I don't think there will be high level evidence on safety anytime soon!
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Cuetang, I was stage I, grade 2, node negative as well (sorry to be intruding on the stage I, grade 1 thread, ladies), and my oncotype score was 12. That puts my chance of distant recurrence after 5 years of Tamoxifen at 8%. I'm curious why you say that an oncotype score of 8 puts you squarely in the gray area for chemo since it is typically said that the benefits of chemo do not outweight the risks for scores of 18 or less. My MO did not offer OS either. Did either MO that you visited recommend Tamoxifen? If so, are you wanting to do OS in addition to Tamoxifen?
My MO said that I would get the most bang for my buck with Tamoxifen, so that's what I went with. I want to reduce my chances of recurrence, but I also care about side effects (including the potential for other serious health problems as a result of treatment) and quality of life, so I try to strike a balance.
Now that I've said all that, you have to do what works for you and will bring you the most peace of mind. Keep asking until you can find a doctor who can at least break down the benefits and risks of OS until you are satisfied. There's also a discussion from someone with an oncotype score of 10 wanting to do ovarian suppression on the IDC board. Good luck!
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Thanks Swim Girl, I really appreciate the input and the thread links! Yes, thanks for correcting me on the "gray area"...it's more of me mentally thinking I'm in the gray area. The MO definitely said Tamoxifen. It was only reading about the various input here on Oncotype scores, OS and Tamoxifen that I ventured onto this thread to get some input despite not being Grade two.
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annicemd,
I agree, many women will continue to suffer for the foreseeable future.
In regard to genetic analysis, I am on board for the ride when it comes to the concept. But ten years ago the genetic breast cancer specialists at Myriad sent me my results with a note indicating that they would be in touch with me if over time there was any new information they found that was related to my genetic make-up. In that decade I've heard nothing whatsoever from them. Are they completely out in left field as a resource? Is the basis of what one physician (Topol) is promoting and advocating different from using genetic analysis as done by Myriad? I genuinely would like to know if Topol's proposal doesn't refer to the same genetic analysis as Myriad.
A.A.
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Annicemd-- thanks for the welcome and for starting this very informative thread! I guess I will have to see what oncologist #2 recommends on ovarian suppression, as today's oncologist was pretty against recommending that as my treatment plan. I figured since I'm a big ball of estrogen I was surprised by her not recommending OS. I will definitely have to look into the SOFT trial results when it comes out this year.
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I've not read a lot but am a few chapters into Dr. Topol's book, find the subject to be very intriguing. I'm wondering if any of us can change what we are doing now, according to this plan? For example - are any apps now available for general use?
Welcome, Cuetang. I lived in Fairfax for 7 years, left in 2010 - loved it there!
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Welcome Cuetang! I know you are having a second opinion....However, I would strongly recommend that your case be presented to the tumor board. Ask your MO to have it presented....That way, you will have several more opinions about how to proceed...especially if your second opinion differs greatly from your first opinion. I think the biggest challenge that faces patients like us, but ESPECIALLY younger patients like you (I was closer to what should have been NATURAL menopause) is...what other risks would you be potentially causing if you shut down your estrogen production at such a young age? Do the benefits of O/S justify the risks? Unfortunately, the preliminary results of the SOFT trial will not be known until later this year, so there is NO answer to that question! Being young and having a less aggressive cancer creates a very challenging treatment protocol. For us, without much concrete data to look at, it becomes a tough call on how NOT to OVER or UNDER treat us!
It appears from reading this thread that many of us have chosen O/S and thankfully are doing well. I look forward to hearing what your other physicians suggest. Unfortunately with us there doesn't appear to be a right or wrong treatment...
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Joy...Glad you find Dr. Topol's book "intriguing." I know it's not an easy read, but IMHO a very valuable one! Regarding apps...here's one designed by Quest Diagnositics...they do my blood work:
http://www.questdiagnostics.com/home/patients/get-results/mobile.html
Here's a bunch of cardiac apps in the works:
http://www.health.harvard.edu/family-health-guide/updates/using-smartphone-apps-for-heart-health
Wanna work your body:
http://www.hellomornings.org/top-10-fitness-apps/
And here's what's in the works:
http://gigaom.com/2012/11/29/with-sensors-apps-data-my-smartphone-is-almost-my-doctor/
I could keep going on and on and on.....
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Welcome Cuetang! Reading your post brought back memories from a few short months ago when I was faced with the same decision(s). I tried to gather as much information as I could, and sought multiple MO recommendations, and it still was not an easy process. I naively thought they would all say the same thing! As voraciousreader mentioned, there isn't a right or wrong answer right now. You have to trust your instincts and do what you are most comfortable with. For me, my oncotype of 16 gave me a 10% chance of recurrence with the tamoxifen. My MO thought the OS would decrease that percentage by 2-3% (just her estimate), and a single digit number sounded better to me than 10%! Like Annice and others, I'm waiting on the results of the SOFT trial to gain more information.
Best wishes to you.
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