Breast Cancer mom says no to surgery and chemo

debiann

Another consideration is that the woman does not have cancer at all, but is just seeking attention and making false claims. Unfortunetly, it would not be the first time we've heard of this kind of behavior. There are people who can be very deceitful if  they have something to gain. It would be interesting to follow this story to see if she eventually claims to be cured.

If she truly has cancer I'm very sorry for her and her family.  If she's faking it to gain attention, donations, or promote an unfounded cure then she is extremely  dangerous to vulnerable cancer patients.

pipers_dream

labelle, I read that book and thought it was fantastic--it's not as rare as most people think as I know at least 3 people who've had this happen and I'm not a highly social person. In fact on my Facebook profile this am, the grandmother of a young woman who had cancer was celebrating the fact that it's been two years since her rather dramatic remission and all she'd done for her cancer was go home to die and make amends with people because she'd been a meth addict. She was weeks from death. Nedless to say, she hasn't been tempted to touch the drugs since and is now mothering her two boys

leggo

There is no cure for breast cancer. If there's a doctor on this planet that has said that, in any other instance than "in situ", they are 100% misleading and woefully misinforming their patient. I usually don't get too worked up about all the misinformation I read on these boards, but stating that there is a 70% chance that someone could be cured 'bout made me sick. Seriously. That statement is almost dangerous.

NineTwelve

Those were my probably misleading statistics. For what it's worth, Momine is right in that I was thinking of the 30% rate of recurrence for those cancer patience who are told they are cancer-free after their treatments. I was not trying to say that conventional treatments cure cancer for stage IVs. I'm not sure how I could have phrased it less dangerously, but my intention was not to misinform.

Momine

Leggo, 70% of patients (or possibly more) do manage to live normal lives with no recurrence. In a sense, it is fair to say they were "cured" of cancer.

What makes me upset is when I talk about having cancer and my onc corrects me to "you had cancer." No dude, sorry, until I die of something else, I am living with cancer, even if it kind enough to stay dormant.

leggo

"it is fair to say they were "cured" of cancer."

Not to me. Everyone is free to feel as they wish. However, these are statements I won't let slide without saying something. They are blatantly incorrect, and dangerous as I said earlier. I want to sleep with a clear conscience, so I'm setting the record straight. Also, as I've said earlier, you can find numerous erroneous statements on any given day....whatever....for the most part they're benign. These are not....they could seriously impact someone's treatment choices....possibly incapacitating or even fatal choices. 

Momine

Leggo, yes, technically speaking, I agree with you. The best a breast cancer patient can hope for is basically a "chronic" remission.

Deblc

Doesn't "cured" mean that it never comes back? For many people it doesn't. I would consider those people cured. Unfortunately we don't know ahead of time if we are or aren't. And is it correct to say the cancer is dormant? Isn't it more a case that at any time our normal cells can mutate into cancer cells, not that there are cancer cells lying dormant ?

debiann

I like the term "ned", no evidence of disease.  Cured seems overly optomistic and remission sounds like waiting for it to come back. 

When people ask me if I'm cured I explain "ned" and say I can only hope to stay that way for a long time.

gemmafromlondon

leggo - it is possible that you may be wrong. Research done in Norway comparing numbers of deaths from bc pre and post introduction of mammography indicated that there was a possibility that some bcs may have regressed on their own. Sorry I cannot be more specific - I think it was published in about 2009.

Cancer can regress and has been known to disappear but there is still a very great deal to be learned about this ghastly disease and anyone taking a chance on curing themselves is probably foolhardy as non-scientific regimens have had little success. It does seem that one can help oneself to live a more healthy life post bc but reoccurrence can - and does - happen. Sadly, it seems to be a lottery.

leggo

Gemma, spontaneous regression...sure, I can get on board with that, even make a case for it. Cured....no. BREAST cancer doesn't work that way. To each his own on the topic. 

Deblc

Again, if a person never has a recurrence of a disease after treatment, isn't that the definition of cured? And isn't that the case for some BC patients? So isn't it true to say that some people do get cured of breast cancer ?

Deblc

KayB, isn't that the tragedy, that we could very well be cured, but we don't ever know until we are on our deathbed.....what a lot of needless worrying and anxiety could be relieved if we knew ahead of time! That's why I also understand when people say that we can never claim "I am cured" because we never know for sure, hence saying "I am NED." Hearing about your sister is wonderful...25 years!!!! Your sister, I think, has a great attitude. Some might call it denial, but so much better to live your life thinking you are cured, instead of worrying about it constantly. I'm trying very hard to do the former, because the latter is torture.

Giazuc

Debic, I agree with you. If a person never has a recurrence of a disease after treatment, I would think of that person as being cured. To me, yes I would define them as being cured. It's also more positive to me to define or label them as 'cured'. And I think that's ok

DiveCat

I think the issue is you don't know they are "cured"...until they die of something else, and their body also shows no signs of metastasis. So, they are considered cured because they were hit by a bus at 95....

You can't really say someone 5, 10, 15 years out is certainly "cured" because distant recurrences still can happen. So, the term NED makes sense to me as well. That does not mean someone might not prefer to consider themselves cured though, especially 25 years out!, and that's fine too,

Momine

Deblc, I think "dormant" is accurate. If you get BC mets 2, 5 or 20 years after a BC diagnosis/treatment, then there were cells lurking all that time from your initial DX.

shaz101

I'm a little confused by the whole 'cured thing' my MO said that if I do all the treatment (surgery/chemo/radiation/hormonal therapy) now that they were going for a cure...if I didn't do all of the treatment now (chemo) and the cancer came back they couldonly treat it, not cure it. So is that not correct? 

suzieq60

Surgery is the most important treatment!!!

debiann

The medical profession does use the terms curative care and pallitive care. Curative care refers to treatments used for early stage disease that potentially will never return. The chemo tx may be very harsh, but short term because the goal is to eradicate the problem.

Pallitive care is for advanced disease in which it is thought totally eradicating the disease isn't possible, but with long term treatments, progression can be halted and symptoms eradicated.The chemo treatments may not be as harsh as curative because they will be given for a longer time.

Curative care may become pallitive care if the disease returns.

My MO does want me to consider myself cured till there is some evidence that I am not, but it is really hard to allow myself that much optimism. That's why I like the NED term.

leggo

DiveCat, Momine, Debiann, your posts describe bc perfectly. I just wanted to add that those five year stats that the oncology profession likes to use when it comes to breast cancer really get the message across. Sure it might sound good if you're diagnosed in your 50's or 60's. Not so much if your diagnosed in your 20's or 30's. That five year spin, which is really the only way to quantify your risk is scary as hell, at least it was to me. 

Bren-2007

I like the term NED too, especially if I'm talking with people who understand what breast cancer ... or any cancer for that matter ... is all about.  With people who don't really understand, I use the term "cancer-free" to describe myself at this point.

hugs

Bren

Momine

Jane33, the doctor you posted does not do breast reconstruction, at least not according to his site.

shaz101

Thank you for the explanation. It makes sense xxx

SelenaWolf

The ultimate goal, of course, is to never have the cancer recur by stopping it before it has a chance to shed nasty little cancer cells into surrounding tissues, the lymphatic system or the blood stream. That is what is meant by "curative effect". I think many doctors use the term "cure" when they really mean "curative effect", which is very confusing. "Curative effect" and "no evidence of disease" is what treatment is striving for. And this is, statistically, more likely if your disease is discovered and treated at an earlier stage.

But, as leggo said, there really is no cure in breast cancer; at least, not yet. A cure would mean that it wouldn't matter what stage you are, treatment would eliminate the cancer and no one would ever relapse. And some of feel that using the word "cure" when talking about breast cancer treatment is misleading as many of us are aware that, just because your disease is discovered and treated in its early stages, is not a guarantee that it will never return.

So, like others above, I prefer NED.

Hopeful82014

Leggo, as one who was dx in my late 50s, I can assure you that 5 year survival doesn't sound so good, no matter what one's age.

I truly hope that one day we will be able to move beyond using 'NED' and refer, accurately, to being 'cured.'

leggo

My apologies for offending Hopeful. Trying to get a point across....badly. 

Hopeful82014

No apology necessary, leggo, although I do appreciate that. I come from a family where most of us, women and men, tend to live very vigorously and happily into our late 80s and beyond, so my viewpoint may be a bit out there.

I will say that I am thoroughly appalled at the number of women in all decades of life who are hit with this.

NATSGSG

@Giazuc, Thanks for starting this thread. I absolutely enjoy reading everyone's viewpoint.  I do agree surgery is a must-do in protecting one' body even if one does not want therapy of any kind.  Like many of you, I could not wait to hv my 2.5 cm tumor taken out, and I knew that I will have a lumpectomy this past March, 2015. 

I also agree that the ability of any Dr to communicate well affects a patients decision to move forward or not. Which was why I started writing a very detail journal at the "Diagnosed and Waiting for Test Results" section to share my experiences in the hope that it would reduce the fears of those who may have been inadvertently bias by other's negative experiences or persuasion. 

I hope the lady in question have someone who can bring her around...for the sake of her children...

abigail48

not all tumors are operable

edwards750

But hers is Abigail. That's the point. It's her life but I think she is deluding herself if she thinks she will live longer dealing with her cancer her way. There are countless people who have chosen her method but most of them aren't alive today. I refused to play Russian roulette with my life. She has children which is why I'm surprised she is going this route.

Diane