Polite Explanations are Welcome....

AlaskaAngel

apple,

I don't believe in any of my posts I suggested that OA across the board should be the solution to each woman's situation, and am sorry if that is how it was interpreted.

I do believe that some medical providers are so impressed with their own particular treatment regimens that they also would not give the regimen that the onc down the hall or down the street would recommend. So does that mean the regimen the onc down the hall recommends is any better or worse?

I think that if docs are going to use the freedom they have to make their own brand of recommendation based on medical knowledge, the guidelines should at least be honest enough to be designed to meet the life needs of breast cancer patients, including those who literally are unable or unwilling to do chemotherapy. Not all patients have the practical means to do chemotherapy when the onc recommends it, but if they don't even know in the first place, and are never told, that OA has been used for many years successfully to treat breast cancer, and they don't have the means or don't have the desire to do chemotherapy, they aren't being given the best possible information about their choices.

A.A.

voraciousreader

AA.... How do you know with certainty that women are NOT being told their options? You base your opinions on your experience. Furthermore, WHAT WAS THE OUTCOME OF YOUR COMPLAINT?

AlaskaAngel

It sounds to me like everyone here is in agreement that telling patients OA is a viable option is SOP, and isn't  and shouldn't be left out of discussions by medical providers who recommend chemotherapy. That is what I hope too.

voraciousreader

Ahhhhh.... Let's see.. If your complaint was dismissed... Then it PROVES the establishment was in cahoots. And if they found in your favor.... Then it could be generally assumed that ALL doctors are heretics.... I guess I really have no desire to know the outcome because in AlaskaAngel world everything REALLY IS BACKWARDS!

AlaskaAngel

We ain't all alike.... Thankfully.

A.A.

Denise2730

If I hear the words ovarian ablation one more time I will sceam! Are you getting some sort of kick back for every woman that has one AA?

voraciousreader

So it is okay to rage about your doctor and tell all who will listen that you made a complaint. Where is the transparency? We shouldn't know the outcome?

AlaskaAngel

It is, of course, just as difficult to do standard treatment as it is to choose not to, because neither are garanteed to be successful.

voraciousreader

You haven't answered my question. What was the outcome of your complaint?

Circles

I love the thread title Polite Explainations Are Welcome.  lol though it isn't really funny. It's the kind of bashing that no breast cancer patient or survivor needs.  This is so not cool.  Everyone can have their opinion without being so nasty with it.  Please?

voraciousreader

Nancy... She has made accusations about her doctor and then disclosed that she made a complaint.





It doesn't matter who started the thread. Sisters have a right to know whether or not what is said here is believable or not.

voraciousreader

Circles... AA loves to bash doctors and researchers.... politely.

voraciousreader

Really! Nancy? I should give it up? So sisters like me, who were respectfully treated by our doctors AND who were given the choice of O/S shouldn't be heard?



But it iis okay for AA to obsess on her substandard care? NOT!

Circles

I guess this thread is just ruined.  Too bad because it is a topic of interest to me.  I follow AA posts here and there and I respect her opinions a lot.  I do not think for one moment she owes anyone any explainations of her personal experiences UNLESS she chooses to disclose them. 

 AA hold your ground.  Don't be bullied off this thread or site.  I value what you share.

And sisters have no rights to validate everyone elses posts.  If you don't believe it, politely move to a thread you like.  That is what ladies do. 

voraciousreader

Circles... Isn't this an alternative thread? I was offered an alternative and there are many sisters like me who are doing O/S as opposed to chemo. So our voices don't count here?

Circles

An opinion poliety injected is much, much different than these posts.  To me you appear to be bullying.  Maybe you should stop posting long enough to scroll up and read what you have been posting like I just did.  It's pretty bad, it is attacking and it is mean.  I don't see AA being mean to you.

Circles

Great idea, Nancy!

voraciousreader

Circles... I can't imagine anything more insulting than telling sisters that when they choose chemo, they are promoting consumer demand and standing in the way of making progress in finding alternatives.



Shall I go back and find the thread where she said that? I had other sisters PM me and tell me they are alive today because of their ongoing chemo.





So it's okay for her to question the care others are receiving, and I'm the bully. Yep! That's how ALASKAANGEL world spins.

SeasideMemories

Oh, Good Grief!!



This conversation has become little more than a pissing contest to determine who is the most right in their mind and who can get the most people to agree with them! There truly is no further knowledge being gained here for those already here, as well as those looking for answers in the future...



In fact, if I were someone new to this site, I would be mortified by the tone of this thread and not by the content presented by the original poster...This is listed under the Alternative Treatments thread so why is anyone surprised that non-conventional treatments are being discussed?



Can we just agree to disagree and move on?

AlaskaAngel

I am a quite average breast cancer patient who hopes that the needs and wants of the variety of bc patients are honored, not only here on the boards, but at time of diagnosis and treatment. People are free to make their own polite evaluation of each other's opinions here. Each of us is just one single individual and our words form our behavior and reputation, good, bad or otherwise. I very much appreciate the people who post respectfully, whether we agree or not about any particular issue.

A.A.

digger

This is all just too funny.....excuse me, politely funny....

Member_of_the_Club

I'm totally confused.  TONS of women with bc have their ovaries removed.  It was an option offered to me, and I chose not to do it.  I don't get that its some kind of secret.  And why would you want to do this if it wasn't necessary?  Don't get it.

AlaskaAngel

MOTC:

Many here tend to think in terms of such difficulties as going bald, or being sick during treatment as being unpleasant but not impossible, and think of chemotherapy as being perhaps not perfect but the best thing available.

But in these difficult economic times, others are struggling just to hold onto two jobs and get the kids fed, and pay the rent. They may not have a car, or babysitting service that will carry them over for the months of treatment and recovery. Some have other health conditions that they are already dealing with. Some are self-employed, with no money to "pay someone" to keep the ball rolling "until whenever they are done". Yes, there are support services that can be had for some of it, but for some, the long duration of treatment is not a matter of how to use a cold cap. Some persons do not want chemotherapy in any form and still are interested in protection that is not toxic therapy.

For some, OA can be a lifesaver alternative, one that is medically performed; not a back alley oddball treatment, but a genuine medically approved alternative that offers some protection.

If you are not one of those people, that is wonderful. But unless you personally are spending your time making sure those people get through chemotherapy and recovery, please remember there are those who don't have the same options to be choosy that others do.

I hope that all oncs offer the alternative to patients routinely. Since there are still plenty of bc patients whose oncs have not matured enough to routinely explain the differences between chemopause, instant menopause from ovarian ablation, and gradual menopause, and are not careful enough to make sure those differences are fully understood prior to treatment, some discussion in bc forum is appropriate to make sure patients are aware enough to ask about it as an option if their onc fails to mention it and they would prefer  to consider it.

A.A.

voraciousreader

Come on Member! What don't you understand? When you click on this thread you are in AlaskaAngel world... Where nothing makes sense. You entered a world where sisters are NOT told by their doctors that they can do O/S. It's a world where research In the U.S. is slow or non-existent. It's a place where making money is the primary interest of oncologists.



Yep! Tons of women, including me, do O/S. But not here in AlaskaAngel world.

AlaskaAngel

It may also be understandable for someone who is dealing with the unpleasant effects of O/S and who has never had to do chemotherapy to be critical of my point of view.

A.A.

voraciousreader

Nancy... You have come late to the party! AA was advocating O/S for practically EVERYONE...including POST MENOPAUSAL sisters! Yes! THAT'S NOT A TYPO! She recommends it for post menopausal women. Oh... Sorry, you didn't hear me because you pressed the ignore button.

voraciousreader

.... And she is critical of researchers for NOT doing studies on O/S for POST MENOPAUSAL sisters too.

SpecialK

Nancy - I believe AA is talking about OA instead of chemo for early stage women who can't do chemo, or don't want to do it.

I had an ooph 10 years prior to chemo, so can speak to both.  The unpleasant side effects of the ooph have been more negative long term - osteopenia, high cholesterol, decline in sexual function, sudden onset of hot flashes, and sleep issues, to name some.  I have to take life long meds and be continuously screened with labs/imaging.  My SE's from chemo were short lived, and I take no continuing medication for any of them.

SeasideMemories

Yep, VR... When you click on a thread started by AlaskaAngel, you are directed to a thread discussing what she intended for this thread to discuss... And, what do ya know... this thread, that SHE started contains some of her opinions which, by the way, can be accepted or rejected...



I get a sense from your posts that you are very knowledgable and you are very passionate in what you believe.... I totally respect that...



I would sincerely hope that all of us, no matter the thread or the difference in opinion that is bound to occur (we are after all a diverse group of people) would, at the very least respect the opinions of others.. Doesn't mean you need to embrace that opinion but simply to recognise that others are entitled to there opinions as much as we are entitled to ours...

AlaskaAngel

I do want to correct any misconceptions. I don't advocate or claim that O/A or O/S should be the choice for all women with bc in all situations. I do, however, believe that oncs should not fail to explain what the options of O/S and O/A are to be sure the patient has the right to consider them and understand what the limitations and difficulties are that are involved with those choices.

However, I did learn that the common definition of menopause (1 year without menstruation) is a very rough estimate, and that there are studies that demonstrate that the ovaries can continue to produce hormones up to at least 10 years after cessation of periods. I believe I did explain elsewhere in this thread that it does scientifically raise the question of whether or not some persons who have considered themselves "postmenopausal" because their period stopped might still possibly benefit from O/A or O/S. It is possible someone did not fully understand that when I posted that possibility.

I think it is better to educate patients to make their own choices, given the varying circumstances among all patients.

A.A.