Stage 1, grade 1 and pre-menopausal
Comments
-
AA...I wish to concur with Annice! The DH's physician is an endocrinologist and has been disappointed as well at how over worked and underfunded endocrinologists and endocrinology researchers are. Years ago, the DH's endocrinologist was told by his hospital that he could treat his rare muscle disorder patients at the local prestigious hospital as long as he devoted 20% of his time to the areas that Annice described. He told us he thought he would never be able to find the time to devote himself to patients like the DH if he had to see the groups of patients that Annice described. The takeaway message is that obesity and diabetes affects all of us!
Annice! Hang in there! I appreciate all that you are trying to accomplish with what precious time you have to devote to your career and to your beloved family!0 -
It shouldn't come as much of a surprise to anyone, but I am in complete agreement with annicemd and VR about the extreme lack of sufficient trained endocrinologists in regard to focusing on the issues involved with cancer treatment. That was quite clear to me when I found it to be so difficult to get an endo to see me, despite the metabolic/endocrinologic changes brought on for me BY cancer treatment.
I thought perhaps the other side of the pond might have developed health care that was more holistic and a bit more comprehensive in that respect, but apparently that is not the case.
My personal perspective is that the dearth of adequate numbers of trained endocrinologists for that purpose is holding us back from moving toward better preventive analysis and care, leaving us to continue to go through last-minute patch-up care by oncology primarily, that is blind to the information that should be gathered at the earliest opportunity about our endocrinologic and metabolic state in order to treat it with greater knowledge and less devastating personal and healthcare costly outcomes.
A.A.
0 -
Starting to get excited. Closing date for preliminary data collection of the SOFT and TEXT trials is September with release of info slated for late 2013/ early 2014. I'm keeping my fingers crossed that we will have the announced results at the December annual San Antonio Breast Cancer Symposium.
0 -
VR,
Yes -- Time crawls by SO slowly in getting results from the studies, while so many are waiting for clearer answers. TailorX is farther out still for results, but even when it does report out, my understanding is that it STILL won't provide info those who are HER2 positive. Will there be any help for HER2 positives from SOFT or TEXT to look forward to?
A.A.
0 -
A.A. I am sorry to say that neither study will benefit HER 2 positive patients. Most HER 2 patients are recommended chemo and Herceptin. These studies only include HER 2 negative patients.
0 -
Hi. This is off recent topics but I wanted to ask about this HERE cuz Y'all are so smart...;)
WHY do the hormone drugs, especially the Al's, cause such hideous joint pain/bone loss?! Is it because it tamps down estrogen? The serious & QOL issues and the SE's just seem...well, not right to me...like one's body is reacting normally/protective. ..screaming out in pain signals like WTF are you doing to me?
Ya know...? I'm just making a common sense observation here...
Do they know WHY the Al's cause the joint pain?
I can just picture maybe several years from now, the medical community going,"Oops...not a good idea"...
P.S. - Thanks to Vor. and others, I'm devouring Dr. BRAWLEY'S excellent book: How We Do Harm...OMG! This book should be required reading for all & especially for cancer patients! !!!!
**I am REALLY thinking that bc.org's Recommended Reading list should be UPDATED. How do I help add book suggestions great articles to it without just mentioning a new resource in the resources that helped me forum?
Thanks,
Violet
Thanks...0 -
Violet... I can't answer any of your questions. However, I'm pleased to hear that you are enjoying Dr. Brawley's book. I wholeheartedly agree that it should be required reading for health care professionals and all types of patients. If you have the time, I highly encourage watching Dr. Brawley's speech that he gave to medical writers last year. You can find it on YouTube. After reading the book, I hope you will appreciate my frustration with posters who have opinions about physicians like Dr. Brawley without ever taking the time to emerse themselves with these individuals' ideas. I can truly say that I would be honored to have him as my physician. He is, IMHO, an extraordinary man.
0 -
VR it will be so interesting to see the early result of SOFT and TEXT. Whatever they show I hope they give some definitive answers for us early stagers. December will be a busy and intersting month!
0 -
Violet, the effects of AIs are due to effects of blocking estrogen. The effects on bone are because estrogen is a profound anabolic hormone for bone. Tamoxifen does not have this effect because it a selective estrogen receptor modulater and actually stimulates estrogen effects in tissues such as bone and the uterus (hence improved bone strength and increased risk of endometrial cancer). The AI's don't appear to increase risk of endometrial cancer. There are less long term safety data available for AIs than there are for tamoxifen but the beneficial effects on improving outcome in post menopausal women with BC are highly significant. Once again for us early stagers the risk/benefits need to be weighed up carefully.
You are right the medical profession is very fickle and it's impossible to say that long term effects of any drug might change established opinions and practice with resulting back tracking... So there is no guarantee on the label I am afraid
0 -
Just lost my long reply post...grrrr...BUT,
Thanks Annice..I knew you'd know! !!
Violet0 -
Annicemd ~ thanks for the info. Kind of along those lines.... I was wondering if there are any negative effects to be had from Tamoxifen (besides blod clot issues - which I've never had a problem with) if you no longer have a uterus?
I was 46 and premeno when I had a complete hysterectomy last month (due mostly in part to an ovarian cancer scare) and am deciding to stay on Tamoxifen due to already having some osteopenia. (I see my MO in a couple weeks) So I'm kind of hoping there will be "no worries" about what negative effects Tamoxifen will be imposing on my body for the remaining 2 years.. especially since it will be having a positive effect on bones. Am I naive to think I can now be footloose and fancy free?
0 -
Hi Susan, well you are right the main risks with tamoxifen are blood clots and endometrial cancer risk. It can potentially interact with other drugs so if you need other treatment it's best to check if there is no interaction. Of course apart from the risks mentioned above the next biggest issue with tamoxifen is that of symptom side effects (often severe menopausal like symptoms)
If you are tolerating tamoxifen without nasty symptom side effects and you have no uterus then the only major real risk to worry about is blood clots....So from what you have said you could probably get the champagne out 👍...but beware of anything else that puts you at risk of blood clots like long haul flights/ immobility.
Hope that helps 😄0 -
Hi,
Just discovered this thread. 47, stage 1, grade 1 IDC. ER/PR +, HER2- and premenopausal. Chose BMX due to STRONG family history (but BRCA/BART-).
I am not even on Tamox. My first onc basically patted me on the head, said "good job" and never scheduled any more follow up. I have a new onc who will be following me yearly, but basically both said to call if I had a problem. :-(
I agree with the No Tamo decision in my case. They both determined risk of SE's outweighed potential benefits. (I have PCOS, too.) But I can't keep that Pink Cloud of "what if..." from popping into my head occasionally. Currently I've reworked my already healthier than most diet and really upped my exercise. Less fat=less estrogen. I will control what I can. I will be studying this thread more in hopes of more info. Thanks!0 -
Good to see you here Dulci...Smart Ladies on here, to be sure...;)
0 -
I'm glad to hear that these expensive trials will provide some information that so obviously is so meaningful and important for other early stagers.
It is puzzling that they would rather just throw chemo at all early stage HER2 positives, instead of demonstrating how few early stage HER2's actually benefit from it. Where is the proof?
At present, in common practice HER2 patients also don't benefit from Oncotype to help them to know which ones actually benefit or not from chemotherapy.
I'm glad that other early stagers are so rightfully thrilled about applying the information gathered in these trials to themselves. But to me it is pathetic that HER2 early stagers are considered to not be worth the effort to include them in the research.
I would have thought actual evidence would have been worthwhile.
0 -
Hi A.A.!
Have ya read Dr.Brawley's book?:
How We Do Harm
Think you'd like it.
Your above comments are interesting...I didn't realize that...
Violet0 -
I read excerpts and reviews after VR recommended it, but as yet not the book itself. I look forward to it and appreciate the recommendation.
As an early stage HER2+++ HR+ who never did trastuzumab and never did an AI and only did 1 3/4 yrs of tamoxifen after CAF with no recurrence, it is hard to stand by while other early stage HER2 positive/hr positive's get whopped with chemo plus every possible additional treatment whether it is useful (or even worse, possibly exacerbates their condition).
The use of chemo in addition to trastuzumab for early stage HER2 positive/HR positives also is based on a lack of evidence rather than upon evidence. It happened in part because early stage HER2 positives for the most part were excluded from most of the trastuzumab trials to begin with. We do not know which early stage HER2 positives might benefit from the use of trastuzumab used alone (without chemo), plus either tamoxifen or an AI. Yet HER2 positive patients comprise 1/4 to 1/3 of all breast cancer patients.
A.A.
0 -
A.A. This thread is devoted to Stage 1, Grade 1, premenopausal. I take exception to your statement that HER2 positive patients are unworthy of being included in the types of trials that exclude HER2 positive patients and are devoted to exclusively HER2 negative patients. You have made your feelings known for several years with respect to offering chemo along with Herceptin for most women who are HER2 positive. Again, aside from the current study on older HER 2 positive patients being offered ONLY Herceptin, a study involving younger women would never occur for two reasons. Recall what we discussed before, a study of that nature would require enough patients to make the results statistically significant. Researchers would probably not be able to find enough participants, so it would ultimately waste money and precious time. The second reason is that it would be unethical to ask patients to be part of a study where there is a high likelihood of recurrence and not offer chemotherapy. Most studies of other illnesses are similar. For example, once a person has had a heart attack diagnosis, they will be offered a statin. When another drug is tested on this population, they will not be offered no drug or a placebo. Patients will be randomized into groups receiving one statin or another or a statin and a second drug or no second drug. It would be unethical to not give the statin.
You know from all of our discussions it would be unethical to withhold chemo from HER 2 positive patients. IMHO, researchers will NEVER take the risk of jeopardizing patients lives to answer your question. The closest they will come to answering the question is with the study of the older women. I'm not even sure that study will ever be completed because I think most older, healthy women will want both drugs. Are there women out there not well enough to receive chemo and are willing to only do Herception? Probably. But maybe not enough for statistical significance.
And I think Violet's recommendation that you read Dr. Brawley's book is a good one. He believes physicians should only be offering patients treatment protocols based on evidence. He is very critical of patients and providers. You probably would love the book and appreciate his frustration of the entire health care system.
Getting back to Stage 1, Grade 1, premenopausal, the SOFT and TEXT trials are important to help ER positive HER 2 negative patients make treatment decisions. Could we do a better job researching ways of helping HER2 positive patients make wiser treatment decisions? Of course we can and do! Saying they are less worthy? I don't think so! Researchers might not be designing studies in the manner you would like which would definitively tell us which HER2 positive patients can defer chemo, but there is no doubt that whatever it is that they are doing is productive and lives are being saved. We can always do better, but remember, studies need to pass muster from an ethical perspective. So for better or worse, we must respect the study designs.0 -
Furthermore, A.A., I know you have also read Dancetrancer's thread as well and know what disagreement there is even among researchers and clinicians with respect to offering chemo AND Herceptin for those patients whose tumors are less than .5 cm. Again, it is hard to guide treatment decisions when there is little EVIDENCE. Patients like myself who have rare mucinous tumors also base our treatment decisions on what little evidence there is.
0 -
Hi Ladies (A.A. & Vor),
Vor: I just want to point out that A.A. did NOT say Her 2+ early stagers are "unworthy"...but that they are (seemingly) considered to "not be worth the effort to include them in the research. "
There IS a difference in connotation there...in intent of thought...;)
I find BOTH of your thoughts/contributions very interesting and love hearing from both of you.
When YOU are the patient that falls into the unfortunate category that is sorely lacking in specific research/clinical studies to show WHO the hell MIGHT possibly benefit from LESS aggressive & likely damaging treatment that you really MIGHT NOT EVEN NEED OR BENEFIT from, AND knowing that this lack might very well be continuing to negatively effect OTHERS in your same boat, it would concern the hell outta ya & frustrate you & piss you off. It sure as HELL would concern ME!
And, I'm not so convinced/sure about the study A.A. would like to see--no chemo/allowing patients to defer chemo vs. Standard Chemo. + XYZ, would be "unethical" necessarily. Just reading the Vent About Permanent Neuropathy thread in Chemo: Before During & After here on this site is enough to worry the HELL out of ME concerning Chemo's sometimes
horrendous / oft effects. And that sometimes the WRONG type of chemo is given when a lesser form would've been the better choice. Dr. BRAWLEY talks about that sort of mishap in his book also. I, myself have neuropathy on my L. Side from my BMX which is why I read the perm. neuopathy/chemo thread.
Yes, we provide Standard of Care guidelines & they ARE what we have, but there are still tons of unknowns within that SOC, and one SHOULD question the hell out of it & do their own research--then decide on their treatment.
Just like Dr.B. talks about bone marrow transplants were all the rage for BC patients UNTIL they discovered that the Doc. in S. Africa's "studies/findings"
were false/bogus plus they were very dangerous & most unnecessary.
So, my CONCERN is always we only KNOW what we KNOW for TODAY...& the SOC protocol for TODAY might very well prove to be DISPROVED next year. I REALIZE that for now they can only provide the best they know to date...but even THAT SOC isn't always a good choice for ALL patients.
Sorry...I know I'm going a bit off track here...I just get what is so frustrating to A.A. & to me...AND I worry about all those patients espec. Newcomers that try to INSIST on *overcare*/aggressive treatments from their docs that simply aren't warranted or
needed & can prove dangerous...thinking MORE
must be BETTER...like Dr. B.
talks about also.
But, thanks to both of you...you've given me lots to think on...AND I hear BOTH of you...Vor, your concerns & comments & point of view is appreciated. ..I ALWAYS learn something from you.
Violet
And maybe there ARE older women willing to be involved in such a study...however,
It ALL is0 -
Violet..not worth the effort in my book is unworthy. Likewise, little research is conducted on studying mucinous breast cancer because it usually has a favorable prognosis. Tell that to some of our mucinous sisters who are HER 2 positive and/ or Stage IV.
Returning to A.A, Violet, while she is rightfully frustrated, she knows exactly how the studies are designed and it has NOTHING WHATSOEVER to do with NOT being "worthy." It has to do with ethics AND then trying how to accrue enough patients into a study.0 -
Violet... One more important point...one of the most important details of a study is the design and getting enough people into a study to make the results statistically significant. When SOFT and TEXT trials began, there was a third study called PERCHE. All three studies were "worthy" and if completed, would have produced great evidence. Unfortunately, PERCHE never yielded enough subjects and the study was disbanded. Researchers need to focus not just on the details of what it is that needs studying, but also need to make a study safe enough to get subjects to join.
Researchers are very cautious and that's what makes discoveries slow. Frustrating? Yes! But make no mistake about it, researchers recognize that there are patients dying of cancer every day while many patients are living with side effects. They know exactly what they know and also know what it is that needs knowing. Getting there is the problem.
Another terrific book is Ignorance: How it Drives Science by Professor Stuart Firestein. He claims when researchers get together they don't talk about what they know. What interests them is what they don't know.
For sure there are gaps in our knowledge of breast cancer. Getting angry, frustrated, or suspicious of whether one group of cancer patients garners more attention or money is counter productive.
We need all kinds of ethical and safe studies that ultimately garner morsels of knowledge that lead to better treatments of all kinds of cancers as well as cures.0 -
An infinite amout of research would still not result in answers to everything! BC research has been well supported over the last few decades and outcomes have improved so much which is something that many women who "wore our bras before us" did not have the benefit from. As I have said before on this thread I worked on a breast cancer ward in 1992 as an intern and the majority of women did not survive this disease and BTW there was very little availability for reconstruction then either so mastectomy meant something very different then and wide availability of recon has helped many women to achieve a return to "normal" femininity because of the research and development into reconstruction. We have come a long way.
The big picture is that BC specialists do not want to risk recurrence by withholding effective evidence based treatment in case a few women don't need it. Altruism is tricky to accept if you are someone who feels aggrieved that you have come to harm from a treatment that benefitted many others but not you yourself!
We all need to be aware that there are many other diseases that have not received the level of funding over the years that BC research has received and there are many people with many diseases who might benefit from different treatment algorithms but the research has not been done!
The hard truth is that as we get another set of answers and more focused treatment for one group of patients, so more questions arise for the outliers... This may be the case with SOFT.... We will see!0 -
Annice:
Thanks...I'm hearing ya too...and Vor...;) Still, it's maddening that we don't have many answers...yet, have to live with what we DO have. And I AM grateful we're living in a time with far more knowledge than those before us.
AND, I've heard of that book...another one I'll have to get...:)
Violet0 -
Hi stage one, grade 1, premenopausal friends. Sorry to switch gears, but is anyone interested in talking about the impact of Tamoxifen on their sex life? I know this isn’t a big/important issue in the grand scheme of things, but it’s been on my mind and I’d love to hear others’ experiences. I’m 47 and have been on T about 5 months. My sex drive hasn't gone away (I remember someone in this Forum who previously talked about how T basically neutered them), but it’s definitely been taken down a big notch – which makes me feel sad, but not surprised (this was one of my fears about T). My husband is as in to me as ever, but I really have to make a big effort to try to get in the mood. And it never feels as good as it used to. I always knew that once I hit menopause I’d probably have these issues, but I didn't expect to be dealing with it in my 40s (although maybe I should have, it's not like I'm far from 50). I know I should just be glad that I’m an early stager, that my treatments were effective, and that there’s a drug I can take to help keep BC from coming back. But it just kind of sucks. Thankfully, my husband has been very understanding – so far anyway. I’m really hoping it doesn’t have a negative impact on our relationship. But how can it not? Any thoughts or advice?
0 -
Oops! That was Vor's book recommendation...:)
Violet0 -
Hi Pam 7712
I was probably the one you recall as being mostly neutered, which is the case, but I was 51 at dx and 52 at time of initiating tamoxifen, not in my 40's. There is a thread in another forum titled something like "I want my mojo back", and a lot of discussion about the various treatments and the effects on sex life, and ways in which bc patients have shared with each other how they chose to deal with it.
Sadly, even today (10 years after I was treated) most medical providers remain either sympathetic after the fact rather than helping one to make a knowing and more caring full decision about treatment options prior to treatment. Some remain in denial that there are any such effects, perhaps because males have traditionally been the primary care provider and they woud rather not deal with it. Many basically are too busy offering treatment and support for the standard recommended treatments to become knowledgeable about providing help to deal with such side effects.
The major cancer centers do sometimes provide binders or other booklets that include some mention of tamoxifen and sexuality. There are scattered programs, mostly at the major cancer centers, that will accept some patients for counseling. At the major cancer center in Seattle where I went back quite recently to check on this, the response was that they are too busy dealing with the patients who are 2 years out or less, and those patients are the only ones who qualify for sexuality counseling as patients who are trying to deal with the long-term effects of treatments.
A.A.
0 -
annicemd,
I understand how patients who fit into the studies being offered to help early stage patients make a good decision about treatment can tend to see groups that compose less than 50% of all breast cancer patients as being just "a few women" who might not benefit from toxic treatments.
What is not being considered in that case, though, is that early stage HER2 patients are being denied participation in study after study about early stage bc patients as if the evidence that was collected for those HER2's who either had tumors over 2 cm or had positive nodes automatically can be assumed to apply to all early stage HER2 bc patients. Even those who are so knowledgeable as yourself and VR continue to express the belief that these are "only a few women", as if it were actual fact. We do know that HER2 positive patients as a whole compose 1/4 to 1/3 of all breast cancer patients -- between 25% and 33%. Cancer centers that favor hitting even the tiniest evidence of early stage HER2 with chemotherapy freely admit that the vast majority of such patients are not considered to get any benefit from it, but they recommend it because they don't want to take a chance on not offering it to the tiny number that are likely to benefit.
What is also not openly acknowledged here is that many oncs, on an individual basis, are quite willing to offer trastuzumab treatment without chemotherapy, but do also follow the standard of practice in offering chemotherapy to such early stage patients.
All of this is based, as I pointed out, on a lack of evidence, rather than on solid evidence one way or another for early stage HER2 patients, given that most of the evidence that was collected that favored the use of chemotherapy for early stage bc was based on trials for HER2's who either had tumors over 2 cm in size or had positive nodes. It is sad that so MANY patients are being left out of early stage bc trials that identify which patients benefit from treatment and which ones do not.
I'm glad that these trials have been offered to provide actual EVIDENCE for at least the remaining 2/3 to 3/4 of all breast cancer patients. I'm sorry, though, that any breast cancer patients who fall into that group are so willing to leave behind their HER2 counterparts.
A.A.
0 -
A.A.... It's not like HER2 positive patients are INTENTIONALLY being left out of trials. We have EXHAUSTED this discussion over the last few years. Don't you think researchers and clinicians alike would love to have MORE evidence when making recommendations? Reading so many of your posts over the years sometimes appears reckless to me and occasionally almost dangerous to those newbies who haven't had the time nor sometimes intellect to appreciate how medical research unfolds.
As I have said before to you, I am sorry that you feel damaged by your medical team. I know you have good reasons for much of your malcontent at the health care system. I am sorry that your life has been harmed. I pray that one day you will wake up feeling better and also pray that you live a very long life. But I also pray that you will wake up one day and realize that MOST researchers and clinicians ARE working towards a common good for all patients facing a cancer diagnosis. I truly regret that over the years of knowing you on this discussion board that you have grown less charitable and more embittered towards the men and women who are truly trying to spare people from the agony of a cancer diagnosis and treatment.0 -
And A.A... According to the NCCN guidelines, chemo and Herceptin is NOT recommended for the "tiniest" HER 2 positive tumors. And, there is ongoing research that is trying to determine EXACTLY at what point patients should be offered the combo. Dancetrancer's thread is devoted exclusively to that important topic.
0
