Survivors who have used only alternative treatments
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Hi Wornoutmom,
Yes, it's been sad - the fighting has been incredible! I hope that you are doing well and that whatever you are choosing to do kicks the SHIT out of the cancer. I'd love to know what you chose - PM me, if you want.
Lynn18, i found my lump by a self exam, so I get upset when they say BSE's don't work, too. Grrrr...
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Britchick: Well said,
WOM: It sounds like this thread is about to be deleted? I wish you the very best with whatever decision you made. Many here have been thinking about you.
Sounds like many of you found your lump by a self exam, like I did. I believe BSEs are very helpful and BCO has some really great information in their "Symptoms and Diagnosis" area, including diagrams. Thank you, BCO.
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Thank you Britchik. Very well said.
WOM.....hope you are doing well. Some of this started by the way you phrased your question. I know what you were trying to find out. However, there were no women with your diagnosis who said: "Yes, I did only alternative and 10 years later, I am fine".
There are a lot of Stage I women who are doing well with "alternative only" but they are much less likely to have a relapse than anyone "high risk".
That is the crux of all the infighting. A very dangerous hypothesis, yet women who vehemently believe this is the "right way". Then, the rest of us who want to believe the demonstrated results of 70 years of conventional therapy. (Or rather in the learnings based on scientific method and the statistics that support these learnings.)
It has been quite the education for me. - Claire
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Britchick - exactly my thoughts!!!
WOM - we only ever cared about you and wanted you to beat this thing. I do hope that you will at least have Herceptin if possible. All the best.
Sue
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I didn't think of DO's vs MD's. I happen to live in an area with a lot of DO's - my family doctor is one and my former Oncologist is one. As I prepared to go to MD Anderson, I also noted that one of their Onc's is a DO. I certainly love my family doctor - she's saved my life once and my butt a couple of times. Good suggestion from the previous poster.
I edited my post to add that the gyn/surgeon that performed my exploratory surgery confirming my mets 2 1/2 years ago was a DO.
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Claire, in response to your comment However, there were no women with your diagnosis who said: "Yes, I did only alternative and 10 years later, I am fine".
There are a lot of Stage I women who are doing well with "alternative only" but they are much less likely to have a relapse than anyone "high risk".
That is the crux of all the infighting. A very dangerous hypothesis, yet women who vehemently believe this is the "right way".
I feel for women with late stage cancers. I have very dear friends who are now stage IV and others who have died of cancer. I feel for what they go through and try not to say anything that would hurt them. I don't tell them their stupid for doing conventional medicine. I'm not about to compare my dx because I know theirs is worse. My aim is to be sensitive to their needs. With that said, perhaps the advance stage cancer women need to consider too what we go through. Our early stage cancer and sacrifices should not me minimized. A lot of early stage women have lost their breast, and lives have been turned upside down. Some have to deal with lymphdema the rest of their lives.They have made hard and financial choices. And, they have to look over their shoulders the rest of their lives for a recurrence. It's never over for us. Plus, an oncologist and surgeon said that those who are dx with early stage cancer are at higher risk for a recurrence. This is why we are here and are doing what we can to stay cancer free.
We, early stage have made an educated choice. Most are smart enough to see junk alternative approaches just as they are intelligent enough to find what works for them. BCO leans toward conventional medicine, which is ok. Most alternative women who choose the alternative approach don't come here. There are websites with loads of testimonies who chose alternative who are life long survivors. I've searched it out and found other threads of such testimonies. I was recently moved by the real life testimonies from Burzski movie.
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I think testimonials regarding survival is of limited interest.
For all early stages of BC, there will be a certain percentage that will:
- survive with no treatment at all after surgery
- survive with treatment
- will not survive
Nobody knows which group they are in.Therefor studies with a larger statistical base are so important to see beneficial of treatment.One person that has survived with a specific treatment, does not tell much.0 -
Many of the Burzynski testimonials were stage IV and provide medical records showing the diagnosis, treatments and progress scans etc. I haven't looked at the all the online documentation but I know he's meticulous about these things. Even if he can only save a certain percentage, provided it's better than anything else then it's worth looking into.
Personally I don't give any credence to testimonials for survival from primary cancers, but when I see stage IV people alive after ten years of being cancer free, I'm impressed and wonder why no one is studying them to see how they did it. I don't care what his credentials are or how he did it, as long as his methods are being properly studied so they can be used to save lives.
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I don't think the issue is "do self breast exams find cancers that imaging didn't find, or find cancers between imaging appointments", that is a given. The issue is did finding that imaging occult or interval cancer at the time of the self breast exam make a difference in recurrence or progression. I think that is another example of the difference between individual risk and population studies. That's the reason why individual stories always seem so compelling, and population studies leave us scratching our heads at times. I've personally never been swayed by the argument that self breast exams aren't harmless and lead to unnecessary biopsies. How many "studies or tests" like self breast exam have no radiation contrast risk etc. I think it is cheap and harmless, no one knows our breasts like we do, so I'll error on the side of doing it. I've always found it interesting that AFTER you get breast cancer no one hesitates to tell you to do self breast exams, or chest wall exams (in the case of those who underwent mastectomy.)
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There seems to be lots of women that find their lumps that mammos didn't find. I saw my (former) gyn just 5 weeks before my mammo and she didn't feel anything (and should have because both I and the US tech felt the hard mass). Those of us who have very dense breast tissue can be harder to find with a physical exam… but that doesn't mean not to bother. We will recognise changes in our own breast faster than an MD that sees us once a year.
But the LCIS in the other breast was only found with the MRI. ILC and LCIS typically are spotted with MRI and very rarely on mammo/US.
So IMHO self exam might help so why not do it?
WOM sounds like you are doing well. Sorry you had to see this mess but it wasn't your fault. It happens every so often on these boards. If not your thread it would have happened somewhere else.
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Back quickly to the "self-breast exam"--like Patmom said, the studies were based on a formal, monthly, "lie down and examine your breasts in this certain pattern" regime. It found no improvement in overall survival. And "overall survival" is a complex notion.
That does NOT mean don't check your breasts regularly. It just means you can do it whenever you want, in the shower or in front of the TV, in any pattern you choose. Know your breasts. Early detection IS the key to most survival. Most women can't feel a lump till it's 2 cm. Know your breasts enough so you can feel it at 1 cm. Get your clinical exam and imaging as is age appropriate.
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WOM
hang in there.. I wish you the best of luck. post new threads to find support and friendship.. Most members of BCO are not contentious or combative and do not fight amongst themselves..
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continuing on everbarry's point:
There is no Berlin Wall dividing stages anyway. Sadly, many early stage people are future late stagers. All stages are equal and deserve the same respect and consideration - even though late stagers have by far the worst lot, of course. No stage is "higher" or "lower" but, rather, more or less advanced.
We are all on the cancer train together. Some of us are lucky to step off this train at a point at which we can still survive. We are not "lower" or lesser - just lucky. Others will have to get back on this train at a later stage.
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I have always considered that I know what the future possibilities are being stage III. I think a lot of early stagers can have a false sense of security.
I also believe, from personal experience, that the methods of detection are far from foolproof and that the assumption that neg nodes in the armpit mean that you are relatively safe from mets. Likewise, I think a lot of cancer gets left behind because it just isn't seen in the scans.
I know that sounds pessimistic and depressing. Sorry. Just what I think.
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pip -- I'm not sure I agree with your statement about early stagers (like myself) having a false sense of security. We know the stats -- the only thing that seems to determine what our active tx, including AIs, tamox etc. will be. We approach our semi-annual or annuals tests or scans with great trepidation, knowing that, gee, even though the stats might indicate there's only a (for example) 12% chance of recurrence or even mets, we might well fall into that dreaded 12%. Every pain -- whether it lasts a moment or several days -- reminds us once again that we are BC patients.
A false sense of security leads one to skip their tests, scans, exams, onc appts., suspicious pains or what have you. I really, truly hope that there are not a lot of early stagers who fall into that category!
However, your opinion does matter!
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Yes, Linda. I will correct my statement to say that is easier for "some" early stagers to feel safer. I see it on BCO all the time. People question (and so they should) their doctors recommendations based on a couple of pathology results. I have always said that there is a lot more info in those reports than just node involvement, size and staging that may affect your outcome.
However, I also believe that the decision of how aggressively you should treat is more difficult with earlier stages. How much is too much? How much is too little? There is no right or wrong.
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pip57
I agree with much of what you're saying. I think many node negative women who have Oncotype test realize the benefit of having chemotherapy. I don't see the lines between stages as Athena said as Berlin Walls. BC is SUCH a complex cluster of so many different kinds of cancer. The most common denominator I see in my friends is FEAR. Always looking over one's shoulder - no matter what the diagnosis.
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Lindas.....I always think even if our recurrence percentage is low that really isn't that comforting to me. I realize I was the 1 in 8 ladies who got breast cancer so I can definitely be unlucky enough to be one of the low percentage who will have a recurrence.
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WOM, hope you are going well, thanks for the pm on exercise a while back, it was thoughtful of you, and please dont feel responsible for how this thread unfolded, wishing you every happiness.
I missed the discussion that ended in 2 pages of deleted posts, so no idea what happened, but just want to say that i found my own lump too, lying on the couch with my hand tucked under my arm. At 1cm, the biopsy doc said i was lucky to feel it. I think its overall survival that hasnt changed from self examination,hence the talk of it not being of benefit? correct me if im wrong there. but it is probably a good thing i found mine. ultrasound showed 2 tumours, mammo, nothing.
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Dear Lynn18: I could not agree more with you.
I also found my tumor through breast self examination. Mammo missed it, and biopsy was inconclusive, until my doctor repeated it.
The problem is treatment options: no matter how early tumors are found, and the way they are found, we still don't have efficient enough treatments to ensure survival through early detection. That's what the National Breast Cancer Coalition Fund is saying.Why is that? that's anybody's guess (that's where I think Research has not been looking in the right direction for solutions).
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The reason all women dx with cancer and even those who are supposely cancer free look over their shoulder is because once you are dx, we are told that we are at higher risk for a recurrence. You can't ignore bc screening as I did for nine plus years. You realize you're vulnerable and you now are doing what you can to stay cancer free. For some that means five years of tamoxifen, and for others like myself who chose alternative preventive treatment it means finding natural means to stay cancer free.
Perhaps some early stage women will never again be dx with cancer. Because women don't know who will and who will not have a recurrences, they make great sacrifices to stay cancer free. In March, I spoke with a woman in the surgeons waiting room, who had both breast removed for DCIS. She said she had two holes in her chest that weren't healing well. She had the drains removed only to come back and have them put in again. Plus every day she will be reminded of her cancer when she takes her tamoxifen pill. Another woman (stage 1) after her mx was dx one year later with mets. They were initially dx with early stage cancer. No one knows who has a time bomb in them. Plus I've met women with early stage taking chemo. They suffered a lot during early stage only a few years later to be dx with late stage. No surgery or b.c. treatment is simple. Choosing alternative cancer treatment is not easy, because it's not easy changing your diet, faithfully take supplements, exercise regularly, and doing everything possible to stay healthy. It's work, but you know that if you let yourself get sloppy with your lifestyle, you will pay for it. After my first dx, I thought after surgery the cancer was history. I didn't change my diet or lifestyle. One year later, I again was dx, but this time besides the tumor found on the mammogram, the high grade 3 was also multifocal or dotted throughout the 1/4 breast removed. I' learned, I had to be pro-active to prevent another recurrence.
I'm about a month late for my annual mammogram. I am dragging my feet because it seems like yesterday that I had bc surgery. I don't want to go back there. Every six months it is either a mri or mammogram...it's never over.
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Well said, evebarry. I have to admit I don't usually agree with you
, but I do agree with your most recent post above.0 -
Had to share this as I knew it would make all BC patients smile. When you tell people you have BC they give you that look of pitty and shock. My little girl's response the other day just warmed my heart and I wanted to share. She came in on me while changing and looked at the one boob I have left and said is that your owie... Only a child would miss the defomity where they preformed the masectomy. I said no honey it is this one and she said don't worry mommy all you need is a new berry on that one.
I thought how much easier would recovery be if we were all surrounded by such warmth and positivity. With all the anger on this forum I thought it would be nice to have a heart warming story. My hope is that those who come to this forum will leave with that warmness my little girl instilled inside me on that day.
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that is so sweet to hear.. nothing like the mouths of babes and the things they say..
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wornoutmom: I love that story, thank you for passing it on
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WOM, that is sweet.
Better than what my 8 year old son said after I shaved my head.
"Mom! Wow. You look uuuuuuggllly without hair."
lol
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I let my 9 year old son help me shave my head, he liked that!
And he told me that it does not matter if I do not have hair; "You still have your nice face Mummy".
I feel my kids really help with perspective on life.
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wornoutmom~First of all, congratulations to you! I applaude your fighting spirit and courage to choose against the toxins. I am in the same boat. Triple +++, did the bmx, expanders, exchange surgery three weeks ago. Currently on tamox and eating as healthly as I can with a ton of vitamins. I wish you the very best! You got this and honestly made my day to see someone in my shoes.
I'm 34. My son is 7, and my daughter will be 4. They are my world; and my reason for not killing my body from the inside out.
Thank you
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ginger 77 didn't I see somewhere you were doing herpacin but not chemo? Did you have trouble finding an Onc. willing to do just the herpacin?
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i'm late to readin (page 71 is where I started) but I am all for sex in my pool...now if i can only start up my engine....
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