Survivors who have used only alternative treatments
Comments
-
Thank you Diane. Your posts are always well thought out too. I've just got home and will read through the posts as I've just skimmed them.
In regard to Stage, common usage is to call any distant progression Stage IV, but technically that's incorrect if the progression happens after initial diagnosis due to statistical purposes. Initial diagnosis is what all the Staging information refers to on BCO and other web sites.
From the American Cancer Society
A cancer's stage does not change
An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed, only information about the current extent of the cancer is added.
For example, if a woman were first diagnosed with stage II breast cancer and after the cancer went away with treatment it came back with spread to the bones, the cancer is still a stage II breast cancer, only with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it is called a stage II breast cancer with metastasis in the bones. In either case, the original stage does not change and it is not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status.
This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.
There's more in the link about restaging which is rare if anyone cares to read it. I think it's all confusing and irrelevant to us on this forum unless we need to understand research papers.
0 -
DianaEssa
It's not a matter of not hearing you. I just go up and finished reading your post.
To your point, the government has to look at percentages and cure rates when protecting children. A few anecdotal incidents do not make a relevant statistic. I'm glad our government, via regulatory agencies and oversight, provide protection to citizens from potential charlatans. Some parents, while deeply caring about their children, may make disastrous choices for their children, due to religious and philosophical predispositions. At these times the government should step in and not let such neglect and abuse to occur to innocent children who cannot make informed decisions regarding their health care. That you and I have different opinions on this matter is clear. I do respect your opinions but I hold firmly to my own.
0 -
Abigail, I was thinking when I was out, how much I admire your independence and your matter of fact way of dealing with any criticism. You don't rise to take the bait but just explain how things are. No drama. Magnificent. I'm impressed. We all need to learn a lesson from you.
Should things "go bad", please stay for support. I promise not to nag you again about seeing doctors etc. I respect your choice and will always be here to offer support. Many have tried and it's clear you are strong in your choice. I'll be the first to defend your choice no matter what that is.
I spoke to my sister this afternoon. She's a community nurse and has experience in many areas of nursing. She said the training was never to judge or interfere with a patient's choice of treatment whether they chose conventional, alternative or no treatment at all. She has helped me see the futility and damage that can cause as we've also seen frequently on the alternative boards. I see I have tried to 'gently encourage' people and have realised my error and stand corrected. Thank you dear Abigail, it feels like my heart has opened with your gentle words.
0 -
Nothing with bc is simple. I guess staging , for research and statistical purposes is defined differently than it is for common usage. Common usage still allows for restaging if ones bc progresses. Caryn
0 -
I am really confused also. My friend who had dcis had a bi mx and she is now on bio identical hormones. I was on those b4 my dx of IDC and I had a bi mx and am trying to take Arimidex but I took 14 pills and I couldnt breath and my mouth got swollen and full of ulcers and have been off it about a week and feel much better but mouth still burns,afraid to go back to MO.
I feel they are giving me a choice to prevent cancer and die of a fracture cause I already have osteoporosis and the ARimi makes bones worse and also can put me on kidney dialysis or harm my heart! Am I just making a choice about how & what way I want to die in the next 5 yrs?
0 -
I've noticed several Stage IV signatures still say Stage 2 etc etc Mets. That's so readers can see they started as stage 2 and now have mets, so I can see the reason for the way it's done. I'm sure we all realise that most started as early stage then progressed. When reading research I also realise that they stay the original stage in the statistics otherwise it would be confusing. I just didn't realise they are still the original stage on all records.
0 -
most here are so sweet & to an imaginary friend, as my sister calls internet contacts, but that's why I wouldn't want to upset sick women by psting a bad event. if people do keep mentioning that I should get diagnosed etc, I'll probably start relating my own horror stories.
back from the studio to water pkants & get supplies which were there & the tiny bottle of black truffles, said to be antiestrogenic, empty bottle, I pur apricot kernal oil into it & it, of course, leaked all over, won't be back there until sunday, where there's plent there............
0 -
I'm not imaginary, if I pinch myself it hurts... LOL
0 -
I don't quite understand how SusieQ can be sure that Herceptin/Chemo "saved" any particular person. If surgery totally removed all the cancer, even her2+ cancer, then that person would have a good outcome regardless of taking Herceptin or not.
I had a triple positive tumor. I had a BMX and take Tamoxifen, and do some things that are complimentary, including taking vitamin D, kelp (for the iodine) and metformin. I skipped the chemo and herceptin. Four years later, no evidence of disease.
Would SusieQ have counted me as a Herceptin success had I taken it? Is my battle against cancer any less successful because of the choices that I made?
I made the right choices for me. We each have to make the choices that are right for us as individuals, and not try to impose our judgement on others who are struggling to make the best choice for themselves.
This is a place to gather information about alternatives, and to support others in their choices, even if we would have made a different choice for ourselves.
0 -
PatMom, This is the dilemma with primary cancers. It's only by studying statistics that we can say a larger percentage were progression free with one treatment so it must be superior. There are women who do and don't progress so an individual is never proof of anything, conventional or alternative. With mets it's a different story as the results of any treatment are soon seen if they work. The same with neoadjuvant treatments where the tumour can be measured and complete response checked with later surgery. If just one person survives mets long term then that's beating the odds and needs to be studied.
So technically you are correct that we have no way of knowing if any individual cancer cells were removed with adjuvant chemo. But for the sake of personal peace of mind it's good to think we've been cured. Personally I don't subscribe to the theory that the chemo kills circulating cancer cells. Some people who progress are diagnosed with mets during chemo, some just after, some months or years later. There seems to be no pattern that gives me confidence that we know anything about adjuvant chemo. But that's just my opinion.
0 -
I enjoy the discussions here very much.
I admire you Joy, for the time you spend on research and support here, esp. when it must be 3 am or something downunder.
0 -
There seems to be no pattern that gives me confidence that we know anything about adjuvant chemo.
Joy, I agree with this. It's also my view - and only my view- that while chemo can and does kill cancer cells, it doesn't kill the cancer per se. That's why I consider it more palliative than anything else, and that's why I would be more likely open to chemo if I were stage IV than as adjuvant/neoadjuvant treatment for early stage cancer. The only time where I might face a dilemma would be if I had inoperable stage III breast cancer. Chemo shrinkage might be necessary before surgery could be considered.
Chemo can work with other cancers - but, as I've said before, its history with large organ cancers is abysmal. The real truth about this is often clouded because chemo can probably extend life and survivability (it can also kill) so five- and ten-year endpoint studies look better with chemo than without. Study results frequently ignore or minimize high dropout rates.
Many people may see their cancer progress with chemo - this is very hard to verify, though. We only have hints of evidence. In fact, we don't have great evidence for either side of the argument. When you publish a study saying a higher percentage of women who used chemo survived by x endpoint than women who did not, the misinterpretation is that chemo will cure cancer for some. Not what the study says, but it's what the media, patients and advocates want to hear. I argue that they, more than Big Pharma, are the purveyors of misinterpretation, because fear and hope can be great distorters..
In fact, fear is so great --fear that these much publicized treatments are either deadly or worthless, that is-- than any patient who suggests it is attacked even on support forums. Many people need to convince themselves that their treatment choices are the best. We ALL do at some point. I include myself. It takes courage to admit that one will never be certain, and that one must live with that uncertainty. Not everyone gets there. Tolerance of ambiguity is a tall order when it comes to your life.
I must have had a grain of wisdom somewhere in me when I made my cancer decisions, because I realized that I had to overcome my fear of death before I could make a choice that was right for me. That is very hard to do.
0 -
Brilliant post Athena! You explain so well what I'd like to say but I can't find the words. Anyway, it will be 3am in 15 minutes, so good night! (or good day)
0 -
Joy, I know this thread isn't about staging, but since it came up in regard to assuming cancer progression would change someone's status to stage IV it had to be addressed. Thank you for taking time to clear up at least my misconception. From your explanation, WOM is always a stage 111a.
Staging has always been confusing to me. I see from some threads women who were early stage stats change their status to stage IV. From what you said, they are still early stage cancer that mets.
I wonder since my recent IDC dx is really left over cells from the DCIS that progressed to IDC, I had a few years back ... if my now stats should be DCIS that became invasive? The doctor did say it was a recurrence of the DCIS .... (it was right under my first lumpectomy). The reason it wasn't found a year ago when I had another bc surgery is because the tumor grew right under the first lumpectomy scar and wasn't easily seen by the mammo or mir.
0 -
Eve, not to be critical but Joy points out that staging for research and statistical purposes seems to be defined differently than the way we define and use it in everyday life. Once most people are dx with mets, they self define as stage IV and this vernacular use is supported by many oncs and sources that define staging. In a sense, it is a bit of a semantic game. Whether I say stage IIB with a met to my femur or stage IV, it still means that my bc cells have moved to an area beyond the breast. I realize that this doesn't make things any clearer. Nothing is cut and dried in the world of bc. Caryn
0 -
PatMom - I was talking about women with liver mets which have been totally erradicated with herceptin and they have been NED for 2 or 3 years.
0 -
Susie,
No, I wouldn't wish that on anyone but Abigail is an adult and has a right to make her own decisions whether anyone else agrees or not. She has heard what others have to say but the choice is hers. Caryn0 -
I suspect it had spread long before I noticed the trouble, but not to my liver I'd think, it strong since I stopped drinking in 1970, & I doubt to bones, theyre strong too as I walk a lot & carry a pack. lungs & kydneys are iffy though, but I guess I'll never know. & no surgery would cure the shakes or the dizzies,
0 -
Abigail, unfortunately drinking and exercise have no influence on where cancer spreads. I hope yours hasn't, but nothing you did before will effect the site of metastasis. That monster just travels where it feels like going. But being healthy would definitely help you get through surgery and chemo, if you were to choose one or both of those options.
Best wishes!
0 -
I doubt it
here goes as promised: when I was 9 an allopath told my mother , (& how many other mothers) that I had an imperferate hymen which would have to have surgery so I would be able to pass blood when the time came. under the anaesthetic I was fucked twice, by the surgeon & this anethesiologist, probably his brother. how do I know? I dreamed that twice I slid naked down the suspension cables of the golden gate bridge.
& sleeper: why would you allow yourself the stress of those chat rooms? I looked a bit at first & got thoroughly bummed out. here is bad enough
0 -
Wow-that was pretty random abigail-how does it pertain to the discussion here?
0 -
this morning I mentined to joy that if people kept bugging me about this, surgery & the rest, I'd post some of my allopathis horror stories
0 -
Wow. Just wow. I have no words.
0 -
Oh abigail, how horrible. As a survivor of childhood sexual abuse, all I can offer is that counseling did wonders for me.
0 -
I did that for awhile when I was using heroin, but I'd at the time long ago forgotten this trahma
0 -
You can always go back. Like I said it helped me.
0 -
actually I did, after my biker died & genworth refused me long term health insurance on the basis of a letter by a psychologist 50 years ago. this psycologist, a very neat woman, did help he a very great deal with that trouble though I will never recover from the loss of my friend.
that old what now 65 years ago occurance is way lost in the mists of way more recent saddnesses
0 -
Abigail, Have you actually been diagnosed with breast cancer. Wouldn't it be a good idea to have some tests and find out exactly what you are dealing with. If you do have metastases, then you will be able to better decide on any dietry fixes you could make. You say you are in your 70's and you paint. I know you lost your biker, but you still have your painting - that's a lot to live for.
0 -
please STOP
fast forward 15 years, 2 brothers, same name as the ones when I was 9, one of their sons I guess, I was married but couldn't seem to get pregnant. one brother did some tests, the next time I was there there was another brother, I complained. to no avail. he dput up I guess what they then did dialation & curratage with. hurt a great deal, I rose up & he said, lie back down or you'll hurt yourself I did & he pul;ed it out. I said "f****** sadist". the nurse iguess billed my mother for this.
0 -
Good lord, Abigail, where was this??
0
