Polite Explanations are Welcome....
Comments
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Alaska Angel, what do you mean when you say 'those who do get back to normal are more likely to recur'??
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digger,
"Those who cannot remember the past are condemned to repeat it ",
"Oldtimers" often encounter controversy because of their additional experience over a longer period of time, especially since many treatment effects are only encountered over a longer period of time. People who are 5 years out or less from treatment or who are younger at time of treatment have not yet had the full experience of aging due to treatment. Some also tend to take for granted the knowledge that has been created through the trials and the feedback and the experience of those who have gone before, as if that knowledge is something they have because they are more savvy or aware, or because their doctors have been more open with them, or because their choice of doctors was simply superior. They are also the ones who are happiest with the status quo, and not to be as involved with questioning treatment to move forward with better options.
It is partly a personal issue for me, and partly a desire to help others have access to genuine critical thinking to decide what makes the most sense for them, and to have genuine freedom of choice, rather than be limited to the one choice that others would make because "other people think so". Some people have more satisfaction when they aren't afraid of sharing questions and being honest and looking at things critically instead of having someone else make their decisions for them.
I know that for some the fear of cancer is so great that they are happier to not question at all, and to go with the flow of whatever current treatment is being handed out. That choice should be available, but not forced upon others.
A.A.
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Racy,
Youger patients have a high rate of recurrence and are often triple negative or HER2+ and HR- with fewer options. Yet they also often recover or retain much of their previous youthful capabilities, in part because they have not as successfully reduced the amount of estrogen they have. Older patients have a lower recurrence rate and "lose" more of their youthful capabilities but also have less risk because of less estrogen.
A.A.
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hillck - the different "c's" are Cytoxan and Carboplatin
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hillck, the French trial used CAF and tamoxifen, and the FASG06 used CEF(which is like CAF only with epirubicin instead of doxorubicin) and.... darn, I don't recall the spelling.....) So I don't think it is possible that my doctor didn't lie to me but honestly answered that no one knew if CAF was the same as OA. I also know for sure he didn't bother to tell me I was HER2 positive, although he did have those test results. I wonder how he expected ME to decide what treatment to do when HE needed that information?
Cyclophosphamide (Cytoxan) is one....and carboplatin I think is customary for TCH.... (I didn't have AC + TH or TCH, I had CAF.) Anybody is welcome to correct that because I didn't do those.
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AA,
We're not dealing with the Holocaust here. No disrespect, but I think that "condemned to repeat the past" is a little heavy, you think? All I'm saying is that I hope you don't expend too much mental energy on railing against the "status quo" and "lack of questioning," as if naive breast cancer patients are being led to slaughter like poor lambs.
Again, I do hope you can move past this at some point, ten years past your treatment. I understand your treatment was horrible and you continue to have side effects, but I also hope that you do not continue to hold on to so much negative energy inside so it takes over your life, as it seems to have. I imagine it's hard for you to think of anything else aside from ovarian ablation, which is a shame. You probably have many years left in your life, and I pray that you're able to focus more on other areas.
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Thanks for the concern about my welfare, digger. I haven't pretended or said we were dealing with the Holocaust. I simply don't mind sharing what I've learned with others here, especially since there seems to be such fear of being open and honest about treatment that doesn't agree wholeheartedly with the current standard therapy. This is the forum for alternative therapy.
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But Alaska Angel, patients whose cancers are hormone negative would not benefit from ovarian oblation anyway.
What is your definition of younger? I know it is said that young patients often have more aggressive cancers. In truth, they also have more years ahead of them in which a recurrence can occur. Again, the very young are more likely to have hormone negative tumours (and won't be helped by hormone therapy).
If I remember rightly, you were about 50 when diagnosed, which I consider young for BC. 25% of new diagnoses are in patients under 50. Yet you are well 10 years later. You may consider you did not get back to normal but a lot of ladies do, apart from the types of issues mentioned in orange1's post, but those are estrogen related and would not be helped by ovarian oblation.
I am not a medical or scientific person but just trying to understand your arguments and your statement that younger patients, such as me, (48 at diagnosis) are more likely to recur appeared to me to be unsubstantiated as lifemath and Adjuvent Online both gave me greater than 90% chance of being alive in 15 years. ( I realise this is different from recurrence free). -
orange1,
If one is considering chemo, they shouldn't fail to be informed about the side effects - loss of libido, joint pain, wrinkles, osteoporosis, increased cardiovascular risk, stomach flab, loss of muscle mass. This must be endured for years So you are advocating treatment with many long term side effects.
Personally, if I could have my hormones back I would. Mine ended following chemotherapy and 2 weeks of tamoxifen about 9 1/2 years ago, with no advance preparation or warning for me about it by the many dedicated and well-meaning but ignorant nurses, doctors, and technicians who never did treatment themselves. I don't find ovarian ablation more distressing since for me chemo had the same outcome as OA.
Younger patients at time of completion of treatment probably do have an easier time of it than I did, and likely they also don't have complete cessation of ovarian function from chemo like I did, so they are less protected.
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Racy,
You are correct. What I am referring to is the benefit for HR+ patients by substituting OA, not benefit for HR- patients.
A.A.
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AA, my post above was just in response to your assertions about younger patients and recurrence.
I'm not informed enough to know whether ovarian oblation equals chemo, which is the main topic of this thread. My humble opinion is that I trust the researchers and doctors to identify and prescribe the known treatments that will give best results. I am a lay person and would not presume to know a thousandth of what the experts know.
You say also that some younger patients do not have complete cessation of ovarian function. That's why we have antihormone drugs. In fact some patients have both ovaries removed plus hormone therapy. -
"If one is considering chemo, they shouldn't fail to be informed about the side effects - loss of libido, joint pain, wrinkles, osteoporosis, increased cardiovascular risk, stomach flab, loss of muscle mass. "
Sounds like normal aging to me.
I didn't have chemo and I never took an AI. I was diagnosed with BC at age 49, right as I was hitting menopause. Because my BC was ER+, I did not take any hormone replacement. I sometimes read the chemo and hormone therapy forums and see complaints from women my age about the side effects of these treatments. I have all the same problems.... but I never had the treatments. My friends who are my age (those not on HRT) have the same problems - and they've never had BC. So I always wonder if in fact many of the side effects of treatments really are side effects or whether they are just the normal changes that we face as we age. For someone who is approaching menopause at the time of diagnosis, I don't think there is no way to know.
So it could be that your anger is misdirected and what's caused these permanent changes is not chemo but the fact that you have gotten older. Aging stinks but it's a whole lot better than the alternative.
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Beesie, my onc would agree with you.
The way I see it, those side effects are related to loss of estrogen, which can be caused by normal aging or medical intervention to reduce estrogen production.
In either case, these side effects would not be reduced by ovarian oblation. -
I was in surgical menopause at 45 from a TAH/BSO - had all those SE's. Dx'd with BC 10 years later. After 6 TCH those SE's are neither better or worse.
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I consulted with two oncs before starting chemo. Both were open with me in explaining possible side effects in detail and stated openly that noone would know for sure whether chemo would benefit me. (Oncotype test is not covered by insurance in Australia). Both oncs left the chemo decision up to me and I decided to do it.
During chemo I raised with my onc about having my ovaries out and he was open to discussing it after chemo. As it turned out, I was menopausal after chemo and was prescribed an AI, and my onc advised removal of ovaries for estrogen blocking was no longer necessary. I read the info on BCO about pros and cons of ovary removal in my case, and agreed with my onc not to have the surgery.
I did consider the risk of mets to ovaries wth ILC, but then I thought there are many other places that mets can present with or without ovaries. -
Racy,
I agree, surgical OA has similar effects in terms of aging as chemo does.
To All,
It is not some strange, never used and never heard of possibility. It is simply another option that at the time I was asking my onc about, in the year AFTER the study demonstrated that OA plus tamoxifen was equal to the therapy he was recommending (CAFx6) plus tamoxifen for HR+ patients. He understood that I preferred it, and yet he indicated that it was not equal to CAFx6 followed by tamoxifen. Highly reputable cncs sometimes make mistakes and forget very relevant information that patients are asking about -- even when the patient asks multiple times. Oncs sometimes don't bother to check to find out whether the patient is correct when they are more sure of their own treatment than they are about relevant research.
Back then there were few online sites that you all have had to help you learn about bc from so that you are more able to question what you are told. I had to find most of them on my own without any help from any medical provider and far less online sources than are available now. When I specifically requested multiple times to participate in a trial for my type of cancer, I did not know that the trials for trastuzumab were running, but he certainly did. He never mentioned them. I have no idea why he was so completely obstructive.
What is indicative is that so many here had no idea that it has been known over over 10 years that OA is equal to CMF or CAF, should one prefer it. Considering that many bc patients still receive CMF or CAF today, why is it that so few people are aware of that, and so openly doubtful about it?
Trials have been done comparing chemo like CAF or CMF and newer chemos, but the newer chemos ARE used with trastuzumab for HER2's, which significantly would improve upon them at the very least for that set of patients, in comparison to either OA and tamoxifen, or CAFx6 alone. Is it so frightening to understand that CAFx6 is equal to OA and tamoxifen? And that if one added trastuzumab, the effect might improve like it did with TCH and with AC + TH? Why is so frightening to provide the opportunity to consider those possibilities?
I gather that some patients were given the option of doing CAFx6 plus trastuzumab instead, or OA plus trastuzumab instead, if I understand those who posted above correctly???
A.A.
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Beesie,
I think you left something out. Aging stinks but it's a whole lot better than the alternative, whether one does chemo or does OA.
A.A.
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hillck, I had muscle wastage from chemo but after a few months it totally recovered. I am on Femara and haven't noticed muscle weakness as a side effect. Nevertheless, I recently joined a gym and am exercising to build muscles further as I never did it actively before.
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Alaska Angel, it is one thing to say you don't feel that you were sufficiently informed by your doctors, and I am sorry if that happened.
But again, if this thread is about ovarian oblation, that is not relevant to HER2 as I understand it. If the results of the study you refer to are true, then I assume they relate to the hormone blocking effects of chemo which are relevant for hormone driven cancers, but HER2 is a different situation again, as you know.
By the way, I had third generation chemo which I assume is superior to the older chemos in the study. I don't know what proportion of patients still get the older treatments. I would be interested to know why they would get them. -
Racy, I don't know what you meant by this:
"But again, if this thread is about ovarian oblation, that is not relevant to HER2 as I understand it. If the results of the study you refer to are true, then I assume they relate to the hormone blocking effects of chemo which are relevant for hormone driven cancers, but HER2 is a different situation again, as you know."
Why is it that you believe that ovarian ablation is not relevant to HER2?
It is relevant for those who are HER2 positive and HR positive.
Could you explain?
Thanks,
A.A.
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I do understand the thoughts expressed. But take a look at how recently so many of you were diagnosed....person after person, less than 5 years out. Do you all really believe you have enough time out to know whether your current state of being so recently treated is not going to deteriorate more rapidly than "normal aging"? It will be great if it works out that well for you all -- but that isn't anywhere close to what I've seen first hand among those who were diagnosed at 50 and are still around going to the gym.... The vast majority of breast cancer patients are diagnosed age 50 or older.
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Sorry AA but I can't explain it much better though I think you got the gist of it. (Do Americans know the word 'gist'? It means essence).
Anyway, I was just trying to draw my comments back to relate to the main points of your thread:
My understanding was that you were initially advocating OA as an alternative to chemo for HR+ cancers. That's what the study you referenced was about I think. So I understand you reasoning that you might have benefited from OA to address the hormone + aspects of your cancer instead of chemo. (Whether I agree or not doesn't matter here).
But I am not aware of any connection between hormones and HER2+. So I am thinking that OA would not help with that aspect therefore I can't see the point of OA being used as treatment for HER2+, (as distinct from HR+) which you also seem to be proposing.
I understand what was argued on the other thread about chemo and Herceptin or not, but not with relevance to the OA properties of chemo. You didn't even get Herceptin, did you? -
AA, unfortunately I think that most accelerated ageing effects are due to loss of estrogen (through chemo, hormone blockers and/or OA). This therefore contraindicates your case for wider use of OA.
The main potential other side effect from chemo, radiation and Herceptin that I am aware of is heart problems.
Maybe there are studies on ageing and long term survivors.
Actually, I am involved in an anti-ageing program for BC survivors. The intent is for survivors to implement good lifestyle choices to counter premature ageing. -
The side effects of chemo are greater 1) the closer you are to menopause, 2) the higher your stage and 3) if chemo involved a taxane. I was perimenopausal, stage IV at the get go and had TACx6. I do believe I aged 20 years in the span of 6 months. Femara made it even harder to recover.
The problem with ovarian oblation is that no studies have been done comparing it with a taxane-based chemo (that I could find).
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AlaskaAngel will be arriving soon to tell us that the reason why there are NO studies comparing O/S to chemo is because of "consumer demand" (her words...not mine) for chemotherapy. Then she will tell us that it is "too expensive" which taken out of context is true. However, it is also true that researchers design their studies CAREFULLY, because their first oath, along with clinicians is to "First, do no harm." That's also why, often when they go out on a limb and design studies that TRULY want to answer open questions, they come up short....not because of the design of the study...but because they could NOT find enough participants. I have said many times that the heroes in all of this are those patients who sign up for clinical trials.....
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My uterus and ovaries were surgicallly removed over 20 years ago and I still got bc. I was on HRT during that time, but it was only estrogen, no progestrone. When I had my hormones tested last March, my estrogen levels were extremely low and my progestrone was zero. It's hard to believe my ER/PR driven bc was caused by the HRT I was taking. Is it possible the hormone imbalance in my system caused the bc to become invasive? Unfortunately, I'll never know.
I was only shifted to BHRT last March and my doctor said that couldn't have possibly made a difference in that short a time. When my levels were tested again in October of 2011, they were still well below the normal range. Now I'm not taking anything, so my levels should be lower than ever. I'm certainly having all the symptoms of estrogen suppression!
VR: I tried to sign up for a clinical trial on EB-PBI but I was not accepted due to the fact that my prognosis was too good. Well, if it's so good, then why do I need rads! What a delimma.
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Hi AA, it's clear you're really passionate about this ovarian ablation theory. Have you considered contacting the researchers or even maybe becoming a researcher yourself or starting a grass roots effort to promote it? Honestly, the theory doesn't make sense to me personally, but if you really think there's something to it, why not pursue it with actual researchers who might be able to provide some real answers?
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Hi Beasie,
I was flipping through this thread and your comment made me stop and think. You said:
I didn't have chemo and I never took an AI.
I was wondering if chemo and AI were recommended for you?
Chemo was recommended for me and I only had a 7mm tumour but I did have a "question mark isolated tumour cell in the node." It was tested twice but they couldn't make up their minds and that is why it remained a question mark in my file. I am coming up to 3 years since chemo and I have serious se's that are not leaving me at all. Earlier, the gals were talking about ageing. Well, I aged drastically with the first round of chemo! My libido is dead as a door nail which happened at the first round of chemo. And we don't age overnight, so I know it is the chemo.
My oncologist frightened the life out of me. When he recommended the chemo, I asked what my options were and he replied that I had the option of doing nothing, but then he added, which filled me with fear, "but if it comes back, we cannot help you." Well, I know now after doing research that what he said is not true.
Since you are in Canada, (and we are not ruled by insurance companies as to which treatment they will pay since all treatment is available to all Canadians), I am wondering why chemo was recommended to me and not to you?
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Hi hillck,
I think I got carried away with my post, I was thinking in terms of why no AI for her and got carried away with the ageing/chemo thought in my chemobrain.LOL
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AA,
I think what I am objecting to is that, in your original post, you asked why studies weren't being done? Then later on, you ask why women can't choose OA+herceptin if they don't want chemo. In my mind, those are two different requests. The second is giving women an alternative option after they have rejected the standard of care. The first is essentially saying that the medical field feels that this treatment could be just as effective and would encourage women to turn away from standard of care. Since I don't really feel that you have proven your case that OA is equally effective, even anecdotally, asking women to reject standard treatment in favor of a study that will likely not yield anything but permanent side effects would be risky at best. However, if there is a women who is triple positive AND dead set against chemo AND is not concerned about surgical menopause, then sure. Knock yourself out. OA + herceptin it is.
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