Stage 1, grade 1 and pre-menopausal
Comments
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Does anyone know if the SOFT trial results will definately be made available at the Texas Breast Cancer Symposium in Dec 2013..i looked at the program and it does not seem to be on the Agenda.
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This is one of the best threads on the forums because of the combination of people here who have diverse opinions and experience and training, and who are disposed to try to help others even though we sometimes disagree about the best way to do it.
It is funny (and sad), but many times there are factual things I've noticed about my own test results that stand out, and at the time I recognize that there is "something" important about what I'm seeing, but at the time when I presented my observation to the health care provider who was processing information and evaluating me, the information went no further.
I could easily see that the mammogram done after completion of chemotherapy and radiation had not changed my breast density, and then after 3 months of tamoxifen I could see that the density was gone. I pointed that out to the radiologist and told the radiologist that I thought the reason the density had disappeared was because the estrogen effect was less. At that point I was vaguely understanding the information and knew it was quite relevant. The only response I got from the radiologist was that my impression was correct. There was no where to go with the information because as a patient, my impression was that if the rads docs already know that, of course they must have put that information together in various ways in regard to tamoxifen. But.... that was over 10 years ago, and until I saw the Karolinska studies, I don't think anyone ever did put the pieces of information together. I'd love to meet the person who first got that Karolinska project going.
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Regarding someone's question as to why you can't just get ovarian ablation and skip Tamoxifen. Although it is a major source,it isn't just our ovaries that produce estrogen in our bodies. In the book "The Emperor of All Maladies: A History of Cancer" (which is an awesome book, btw) they discuss how back in the early (1900's I think?) they thought taking out the ovaries was the answer because they saw how it shrunk tumors. However, they soon realized that the effect was short lived and tumors were coming back...so then they started taking out BC patients' adrenal glands in addition to the ovaries to get rid of more estrogen, and again the tumors would still come back in some and the patients were suffering major QOL side effects.
The reason for the tamoxifen and the AI's are because you simply can not remove ALL the estrogen. Even men get ER+ breast cancer and they take tamoxifen.
Does removing the ovaries help? Maybe? In some cases? Maybe not. Who the hell knows. You just have to go with current studies are saying, what you and your doctor discuss, get several opinions, go with your gut and wish upon a star. Unfortunately, that's all we got right now.
Personally, for us early stagers, I think keeping our weight down, eating as "healthy" as we can, taking some of the basic supplements (or what you personally have faith in - whether it's Vit D, Curcumin, etc) and getting consistent exercise is our best weapon (in addition to whatever we choose to do medically).
I know it's hard, but try not to stress out too much about it. The odds are highly in our favor. Is there a guarantee that we will never have to deal with BC again? Obviously not, but nothing in life is guaranteed, right?
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Susan,
I just started The Emperor book last night. ..;)
Violet0 -
I'll have to try and like Violet start Brawley's book for the second time because, unfortunately, I couldn't get through it the first time. Maybe when I have more free time to really read....I can't say I was particularly impressed and instead of just saying how great it was I'd prefer to hear specific point that Dr Brawley makes that's revelatory? Or edifying? I just can't say I was surprised to learn that some doctors aren't very good. Or that some have other motives besides your absolute best interest. It seemed to have anecdotes all about that. My time is really limited now and perhaps I need to wait until I have alot of free time to try and wade through it again....
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I think you'll like it Violet.
.. another good one is Bathsheb'a Breast: Women, Cancer & History0 -
Regarding SOFT... The closing date for collection of data for the PRELIMINARY ( half way ) SOFT results was Sept 2013. They have said the results of the data, once crunched, should be known late 2013 or early 2014. There's still plenty of time to schedule a presentation of the results if necessary at the Symposium. Many clinicians are as anxious to hear the preliminary results as we are.
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Jessica,
Did you read the whole book?
I made comments earlier in this thread & others of some specifics regarding his book...;)
Violet0 -
No, I didnt read the entire thing because when I get bored reading a book, I usually stop after a cerntain number of pages...or I skip ahead (nonfiction) to find more interesting bits, and if I don't...I call it a day. I am no longer a student, I just do not force myself to read through books I don't care for / poorly written / not interesting to me . . . I give them some attention, but if they don't earn my attention I just don't have that much free time for reading non - job related materials. I definitely gave Brawley's book a few chapters (also, I didn't think it was particularly well written which surprised me as it had a co-writer).
I skimmed to the end and he seemed to talk alot about prostate cancer and the prostate cancer industry. I'm just not that interested in that angle. Might have made many valid points, but I'm just too narrow minded I suppose to care that much about prostate cancer...kind of like all the attention or overattention to men's cardiac health. Men get alot of / too much attention. Call me guilty of not being interested in prostate cancer. Sorry. But the other chapters I did read (except for the biographical bits which were sort of interesting) didn't interest me as none of it was particularly news, nor told in any particularly well written or interesting way (in fact the opening chapter is unnecessarily sensational--did he really need such an extreme graphic example to make his point?????? Apparently he, or more likely, his co writer or his publisher, thought so. I thought it was kind of a cheap way to start a book. AFter all, he even admits this woman was complicit in what happened because she didn't seek out care when she should have.. He admits that while the example is one of a bad system, the patient also played a role in her premature demise). I get his point, in general, our system is two tiered: some get tons of care, overcare, others get none, too late, too little. Some doctors are bad. Some have really really rich rich patients. But they're still bad doctors! Some people think 'buying' more care = better. They are wrong. I just didn't find any of this new nor told in any new or interesting way.
Dr Brawley seems an admirable person, don't get me wrong. And angry-- righteous anger he wanted to give voice to. It's okay, but just not something I can read every word of. We all come at stuff from different viewpoints, looking for diff things.
The Emperor of All Maladies: now that's a book I was interested to read from the time the reviews came out. Maybe next summer when I have more time.
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Jessica...I think you did a good job of summarizing Dr. Brawley's book. I agree with most of the points you made. And, I too, didn't think that I needed to read the book because I was well aware of the issues he was discussing. However, I think his book is refreshing and important. It needs to be read by those who truly need enlightening. And, I think that first chapter, while very sensational, is as important to tell as every chapter that follows it. Each chapter should be a wake up call to physicians, patients, researchers, advocacy groups, pharmaceutical companies, hospital administrators and politicians.
Incidentally, at ASCO's most recent annual meeting, he received their most distinguished award!
Finally, another terrific book is radiologist Handel Reynold, MD's The Big Squeeze. In fewer than 100 pages he packs a wallop at the mammography controversy. After reading the first 50 pages in the library because I just couldn't put the book down, I contacted him to tell him how much I loved reading his book. He wrote back to me on several occasions. I thought that he too, like Dr. Brawley was a profile in courage. Both men truly, IMHO, spoke up on very controversial issues.
Sadly, back in June, the young Dr. Reynolds passed away. I am left wondering if he knew how ill he was and decided, "What the heck." Regardless, I'm heartbroken. A huge loss for his family and for all of us here on this journey.0 -
I think it's important to realize that there are lots of nonreaders, those that rarely have interest in picking up a book or reading a study or an article. Many people get their information from brief news sound bites and TV talk show "experts"... And anything in depth or longer than a page or two of reading is just too much effort.
This is unfortunate, but the reality, IMO.
I think it's good to encourage those books and readings we find revelatory & important to others here.
The information in Brawley's
book & the other books mentioned are foundational to further understand relevant BC & medical information.
Women would be better informed in making their own personal choices regarding treatments IF they had read /understood some of this info
shortly after their diagnosis of BC. I know I wish I had...;)
Violet
would be NEW to many on this site.0 -
Thanks for all of the book recommendations and the valuable discussion. Compare all of that to what was out there when I was diagnosed in 2001.... The internet had almost none of what it has available on it today.... mostly just a few government sites that didn't yet have as much meat in them... and there were only the beginnings of sites like this one -- and no real awareness yet in the common knowledge that they existed, even after seaching online... the only books that were really "out there" were Dr. Susan Love's book, and one available from the American Cancer Society that was very technical, and Ralph Moss's book, Questioning Chemotherapy.
I couldn't agree more about the value of reading widely, even though it gets confusing and difficult, for making choices for treatment and care.
Thanks for all the book recommendations!
A.A.
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AA yes we are experiencing a healthcare technology revolution, a paradigm shift in modern healthcare. It is wonderfully liberating that healthcare information is now widely available and websites like this one are a true gift to us all. The widespread access to healthcare information has presented a dramatic challenge to the "cultural norms" in medicine. The traditional paternalistic and dogmatic approaches of doctors are becoming a thing of the past and doctors are slowly having to wise up to the needs of their patients including providing explanations about management and providing regular evidence about their fitness to practice. There is certainly a bell curve in terms of the quality of care that doctors give and the Internet provides an information portal for us all to gain information, question our care where needed, make informed choices about treatment and be involved in our treatment pathways. This is true progress which we should celebrate, it is changing healthcare delivery for the better.
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Re side effects of tamoxifen there has been concern that lack of side effects might relate to the activity of an enzyme cyp2d6 as the activity of this enzyme might influence metabolism of tamoxifen. There have been a number of studies published on this and essentially there have been no convincing evidence that the activity of this enzyme has any influence on outcomes in women treatment with tamoxifen and more studies showing that side effects from tamoxifen or lack of has any role in effectiveness or recurrence rates. I was v interested in this as I have experienced no side effects from tamoxifen and I am reassured by the research.
VR do you have anything to add to that ? I know we have had conversations about cyp2d6 before.0 -
Annice... You summed it up well. For those sisters interested in reading more about the controversy, it is mentioned in the NCCN guidelines. So far, the test is not recommended at this time. That said, they still are conducting studies and the most recent research has said there still might be some evidence that supports the test. So, we'll just have to wait and see. I have thought a lot about the controversy. I think one of the difficulties in measuring whether side effects might give us some indication is that side effects can be quite subjective . My physician did give me the test and I was an ultra metabolizer... And yet, I had no side effects . What this all means is....we still don't know conclusively who potentially fails at taking Tamoxifen until a patient recurs.
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Lav, I have had the ovary removal discussion with my onc. At age 45 (well, now 46), I don't need them anymore. So I asked, "why don't you just remove them," and she "because my patients don't like me very much after that." As immediate as ovarian suppression (ablation) is, removing your ovaries is even more of a shock to your system (according to my onc). So, she does this for a few years, and may suggest at some point to remove them--but at that point, my body will have adjusted. She said her goal for me is to never have a period again, so after a couple of years of doing the Zoladex, I come off it and am still not in menopause, she would want to take them out. IDK, seems like a lot of $ and time (going in once a month for a shot), so I'd rather have them out sooner than later.
And, with all of these treatments, hormone therapy is still part of it (vs. an either or, as Susan pointed out). There are side effects with OS. Mine is the hot flashes that interrupt my sleep every night. Not getting a good night's sleep for an extended time is very wearing.
AA--thanks for the compliment!
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Renee ~ I had my ovaries out 2 months ago (due to an ovarian cancer scare- long story) same age as you, 46. I'm on tamoxifen and was having periods every month like clockwork - very premenopausal.
Though I wasn't excited about having to lose my ovaries...I just wanted to let you know that I don't notice any difference except for a few short periods of creeping warmth during the day. I wouldn't even call them hot flashes because they aren't that noticeable/distrubtive (to me). My MO claimed that since I had been on Tamoxifen, my SE's wouldn't be dramatically different without my ovaries. So far he's been correct.
You're doc's comment about (women hate me after I take them out) is stuff I heard a lot before the surgery and people would look at me in horror when I'd tell them I wouldn't be (able to) taking any kind of replacement hormone therapy after the surgery. I expected to wake up from surgery in a pool of sweat with all over wrinkles and grey hair.
Like I said, I'm not happy about losing body parts...but in some situations it becomes the best course of action..and (so far) it hasn't been the horrific life altering experience that I feared. Just FYI.
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ReneeinOH,
It is a really difficult and individual choice to make, especially at that age, which is when women are physically right at their prime, before obvious signs of aging slowly set in.
As a HER2 positive in particular it is aggravating. There is no authorized choice to use surgical OA or such drugs as Zoladex in combination with trastuzumab. The recommendations by the NCCN are so heavy-handed in favoring the addition of chemotherapy for HER2 positive patients, that the HER2 positives who are ER positive don't "get" the information that all most of them are getting out of the chemotherapy is the ovarian ablation. They are prevented from having the opportunity to see whether doing OA by other means plus trastuzumab would be equal to doing chemo + trastuzumab.
So, being able to grasp the concept about the purpose of OA and methods for it based on your posts is quite important. I really appreciate it in behalf of those HER2 positives. I would not have chosen chemo if I had known at time of diagnosis.
A.A.
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I ahev enjoyed catching up on the informed discussion here, thanks Annice, Vor and others.
Regarding tamoxifen side effects, I seemed to have tolerated it well for 7 months but now I have one confirmed dvt in my arm and another suspected in my groin. I am injecting myself daily for a minimum of 6 months.
My MO wants me to continue on tamoxifen ( I am also on zoladex).
I imagine I will get scanned this coming week, as active cancer can also cause clots...
Xx kk0 -
Yikes Kiwi, scary stuff and no fun. I am a needle-phobe so that would be really hard for me. What do the dvt's look and feel like?
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Hi ladies. I'm glad I found this thread. I am in this same situation with stage, grade, premenopausal and I'm 41. So many tests to determine which surgery. Then oncotype to see if I needed chemo, which I didn't so just started rads this week. Now I'm in a weird limbo. My mo suggested since I don't plan to have more chlidren, I'm blessed with 2 boys, maybe the oophorectomy would be my best option. Then I would skip right over tamoxifen and take arimidex.
So all the reading and research about my bc, surgery and treatment(chemo and rads) and I'm here now. The next 10 years. Back in June it wasn't on my mind. The goal was to get the cancer out. I met with my gyn this week. We discussed how the procedure would go. He also suggested a hysterectomy. That's a 6 week recovery and ooph 2 weeks. I just recovered from the lumpectomy with oncoplasty. I'm confident I will just go with the ooph.
Since I'm 41 I'm trying to reason in my head if I did tamoxifen I would also need lupron shot every month. I would get all the SE like menopause then in 10 years when I'm done with the meds maybe my body still isn't ready for natural menopause. Sooo go thru all SE again. But with an ooph in 10 years when meds are done so will all the SE.
I'm starting to feel like this is a more difficult decision with out some sorta test that helps decide.
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I'm a bit confused here. My MO, Dr. Melissa Williams/
Sutter Cancer Center Sacramento said I wasn't a candidate for ovary removal or suppresion. I'm 47 & def. not in menopause. I didn't want it anyway, so I didn't push for it or ask much about it.
It's not *proven* to help, is it?
Frankly, I just don't want the SE's from it...& worry about my body going whacko w out the estrogen. I figure I'll be in menopause soon enough on my own...;)
Is it common to suggest OS at this early stage?
Thanks.
Violet0 -
Yay! My MO put pressure on the insurance company and the Lidocaine patches were approved! Now to see if they actually help my L side pain/ neuropathy. ..
Anyone else tried them here?
Thanks
Violet0 -
Violet, you are right, OS/ooph is not standard of care for early stage, node negative low oncotype etc, unless tamox is contraindicated, I.e. its usually either/or. I was advised agianst Lupron and to have tamox alone. My gut feeling was to be aggressive and there is a tendency in general to use the more aggressive tx for younger women in particular less than 40 yrs. I was 41 at diagnosis so decided to go for OS and tamox. The SOFT study results will provide the definitive answer on this
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kiwi, so sorry to hear bout your DVT, it is a well recognised SE of tamox but awful nonetheless. Keep us posted of your progress, hoping and wishing for scans to be clear
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Thanks Annice.
Violet0 -
Thanks annice, I'm looking forward to the soft results, I'd like to be able to stop tamoxifen as I'm back in the hospital to scan the suspected dvt.
My oncologist said originally he only thought 2 years on the lupron and up to 5 on tamoxifen but he'd be happy for me to stop tamoxifen after 2
Runfree DVts can manifest in many ways. Any unexplained pain should be investigated. Mine was/is and ache like a pulled muscle and very tender to touch.
Xx kk0 -
Thanks kiwi. It's helpful to know that it was very tender to the touch. I pull muscles fairly often, but that tenderness isn't there. I was expecting that the area would have to feel hot for it to be a DVT.
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Hello, I'm new!
I have had a mastectomy for dcis and pathology found idc, stage 1, grade 3. Genetic testing allowed me to avoid chemo but I'm on tamoxifen. Radiation nearly killed me (felt like it anyway - so much pain), and I know there are LOTS of side effects from tamoxifen. It just feels like Im taking poison every time I take it.
I want to stop taking it. I want to go all alternative medicine and keep the poison out. Do any of you know anyone else who's done this. My situation may be slightly different. in 2008 i learned that I have 3 full sized ovaries. Both of my kids were concieved on the first try. I wonder if this is impacting my discomfort? The docs are skeptical so I need to provide a picture.
Has anyone else decided to stop tamoxifen after starting? how did it go (doc reaction, body reaction, emotional reaction, etc) and do you recommend it?? Any good way to go about it?
Thanks much!
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Mummommama--What a roller coaster you've been on! I'm so sorry to hear that radiation was really rough for you. That one is just so variable. As for Tamoxifen, I can't help you with natural alternatives, but I can say that if you haven't had lots of side effects yet, maybe you should give it more time. There's a long list of possible side effects and some of them are dire. However, nobody gets the whole list, and many people have essentially no side effects at all. It's not poison--it's not killing cells the way chemo does, just blocking reception of hormones and fooling any cancer cells. It's a tool, and a really good one when the SEs aren't bad. I suppose you know all that, and I am not trying to say you're wrong to want to look into natural alternatives, because of course ultimately it's up to you.
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