Survivors who have used only alternative treatments
Comments
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Honestly, i don't think folks here are reacting to your treatment decision. The reaction is really to you attacking other people's (FEAR!) and there's also the confusion about your pervious post with the doctors not calling and no one urging you to fight to survive. I still don't get that. I have certainly not said anything to you about forgoing treatment. What i get from your posts is lots of name-calling, anger and, i don't know what that other thing is but it sounds like the people in your life have hurt your feelings. I get that you are surviving but I'm having trouble with the smiling part.
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It's hard to know what treatments might be "unnecessary" because each case is so different. I had DCIS, but it was 9cm so lumpectomy was not an option. They had to take the whole breast, and I didn't hesitate to do that since it was grade 3 and Her2+. I was 33 years old. Was it fear? I suppose I was scared of doing nothing and letting the cancer spread. But isn't that why you chose a lumpectomy? I mean, if you weren't concerned why would you do any treatment at all?
They found one microinvasion after the pathology came back, less than a mm, and totally clear nodes. Chemo wasn't even recommended, but I did take Tamoxifen.Two years later and at a regular check-up they found the mets. Everywhere throughout my skeleton and liver. Nodes still clear, so my cancer travelled through the blood vessels of the chest wall rather than lymph system.
So, my mastectomy was not overkill. In fact, it wasn't enough in my case. There was no predicting this-- my chance of recurrence was something like 3%, less than the chance of getting a new breast cancer. But here I am.
I've chosen to do chemo and herceptin now, and whatever else my oncologist recommends, because at Stage IV I want to prolong my life. But I also want that to be a good quality of life, so we choose less harsh chemos and I see a naturopathic oncologist who helps me to manage side effects and stay as healthy as I can.
Stage IV sucks. I wouldn't wish it on anyone. No one thinks it will happen to them, but unfortunately it happens to a lot of us. I'm not attacking anyone who chooses not to treat their cancer the way that I would choose to. But it would be nice to get that same respect back-- not every person who treats their DCIS or chooses mastectomy is doing unnecessary treatments. To throw out those blanket statements like that shows ignorance of the complexity of breast cancer.
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Seems like all the crazies and attackers are from the alternative side IMHO - probably because they are scared they've done the wrong thing and are very defensive.
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I never attacked anyone. I voiced my opinion by saying:
"I wouldn't think about a mastectomy because in my opinion, women shouldn't be so willing to have their breasts removed if not absolutely positively no other option necessary! And chemo can be compared to the treatment of blood-letting in the past. It will most likely come back to bite you when you least expect it.
And I followed it by saying, "But I do appreciate everyone's concern. At least someone cares."
If you believe you made the right choices with your surgeries and treatments, why be so defensive? Yes, I had a lumpectomy to remove the cancer. I have as good a chance of surviving for five years as anyone else does.
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I kinda like "Miss Orange Smartypants" I'd change my name if I wasn't too lazy too type that in every time I sign in.
I can't speak for the others, but I don't have an opinion about what treatment you should have. I am not trying to sway to to do anything and if you read my post history, you'll see I'm not much of hugger. I was concerned for WOM because I was afraid she did not fully comprehend her situation (>50% chance of stage iv recurrence if no further treatment). She seemed to be under the impression that if she has a recurrence, she would likely be able to treat it effectively/cure later on. Unfortunately, this is usually not the case for Her2+ BC. The full boat load of treatment would hugely increase her chance for a cure. However, I understand she has some health issues she is concerned about so I guess she will have to weigh her risk/benefit ratio of chemo/herceptin/anti-estrogen vs risk/benefit of alt. treatments, or perhaps do a blended approach if she can find an onc. that will work with her.
re: Lumpx vs. Mx. Your antidepressants make you feel better, others' BMXs make them feel better. Not everyone loves their boobs. Some are perfectly happy to replace the old trouble makers with new, perkier models that will never sag. Why does that bother you when they are happy with it?
re: lecturing you about women supporting women. wasn't going to/don't care
re: you craving drama - I should not have went there. Going to stop now.
Glad to see you are smiling and thriving. Best of luck to you.
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MOM, you came to this thread asking for thoughts about your treatment approach. You wrote:
"Please be honest, and tell me if with my diagnosis there's a chance in hell that I'll be okay doing nothing."
You and I have a very similar diagnosis, except I am guessing that our ages are different since you have a grown daughter.
Anyway, the studies show that a woman with your diagnosis has about a 65 percent chance of her cancer returning within 10 years if she does nothing after having adequate surgery. It sounds like you did not have adequate surgery since that would require either lumpectomy plus radiation OR mastectomy. So you probably have an even higher chance of having breast cancer in your future.
There is a chance in hell that you'll be OK doing nothing, but it's not very high.
I think it's ridiculous to claim that everyone makes treatment decisions based on fear. I made mine based on probabilities. There are many things I'd like to do in my future, and battling breast cancer again is not among them. So I made the decisions that have given me the best chance of that.
You're free to make whatever decision you like, based on whatever is most important to you. But the odds are *not* in your favor that your breast cancer won't return. And you do not have as good a chance of surviving 5 years as anyone else does.
Sorry to pour cold water on the discussion, but them's the facts as we currently have them.
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MOM -
Grade 3, positive margins, node+.....I'm thinking you don't have as good of chance of surviving as everyone else if the margins were positive for IDC and not DCIS. BTW - which one is it (the positive margins), IDC or DCIS?
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Well, as I have mentioned, my dirty margin with 1.3cm lump turned out to be a breast full of cancer. I can't imagine what my outcome would have been if I had settled for the dirty margins.
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Hell, I've never liked my boobs - I'm just a big sook who didn't want major surgery. With very small cancers I was able to make that choice.
MOM - Beebs right you did ask if you will be ok with your choices and she has given you the right answer. Please at least go and get your margins clear.
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I'm probably a lot older than most here. I'm almost 62. Times sure have changed. During the 1950s I remember a relative being diagnosed with breast cancer. Back then, the only option was a radical mastectomy possibly followed by radiation. I'm not even sure about that. And if the cancer had spread too much they would tell the family, "It was too late. We opened her up and closed her." So there were no real choices. I also remember my mother having colon cancer when she was in her mid forties. She was never told. Back then only the family was told and it was up to them whether or not to disclose the information. Sounds pretty strange since it's quite the oppositie now. The funny thing is that my dad never told her. No one ever knew about it until years later when he felt it had been totally cured. For my mother it was probably a good idea to believe that it was just an intestinal blockage. Seemed not to be as scary as the big C which was very possibly a death sentence back then.
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Hey MOM,
Speaking about chances for survival, were your positive margins positive for IDC or DCIS?
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MOM - I'm nealy 59, so you are not totally alone. Your mother's colon cancer was probably contained hence her survival. My DH had rectal cancer and it was in the nodes, sure enough it showed up in his lung four years later. He had surgery/chemo and is fine now 8 or so years from the original dx. We can almost say he is cured. So you see - chemo is not totally a waste of time.
I watched my father die of liver cancer and I couldn't believe they gave him palliative chemotherpay with the comment - 'You never know it might kill it'. Well that was bullshit and unfortunately he got pneumonia during treatment and lost his mind. I was robbed of those last few months with him as he wasn't himself. I swore I would never have chemo after that. BUT when it happened to me and the treatment is Adjunctive that totally changed my mind.
Sue
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suepen - thanks for the kind words.
Britchick: great idea. My biggest concern with WOM concerns the HER2 status. I understand the oncs won't do Herceptin alone, and at some point, one needs to concede the issue. Spending one's time researching countless articles/trials etc doesn't change the facts of one's cancer. At some point, one must act, either way, and own it.
WOM, if you're still on the thread, I hope you reconsider your treatment. Is it hard? Yes. Did I do conventional treatment out of fear? (MOM, I'm looking at you) Of course! As MOTC says: I am afraid I won't get to see my children grow up. This is normal, is it not? As it is, I might not, despite all of my treatment - although most days, I sail forth boldly and plan my 10year old's college graduation bash. I actually wasn't afraid once I started treatment! I felt unstoppable, despite the hard moments.
But most of all: I didn't want cancer. I don't want it to come back. So, (MOM, still looking at you also), we choose treatment out of fear, but most of all, from LOVE of our LIVES. And our loved ones: our parents, our husbands, our partners, our children, our darling girlfriends, neighbors, nephews and nieces,.....should I go on?
In the end, it isn't fear that rules the day. It is love.
janyce
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positive for DCIS
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Lyn18 you asked of something besides chemo that shrunk tumors one is essiac. My mother inlaw a strong do as the doctor says person watched her husbands tumor shrink when the chemo wasn't working because her daughter was putting it in his shakes. His doctor even told his daughter to keep doing it since it was working so well.
Let me just say I am sickened at what this post has reduced so many people too!! There was talk about bravery. ANY woman who fights BC has the right to be called brave PERIOD!!!!!!!! To pick people apart is one of the cruelest things I have ever seen. Hollie Quinn is telling her story and has more right to be on this thead than most who have posted here as she can answer my original post. Dispite all the snide remarks she was still civil and I applaud her for that. I can not believe there are people on here that are so determined to prove they are right (right according to their opinion) that they have no concern for the person they are picking apart and anzlyzing. Hollie is a real person and should be allowed to be happy she has survived PERIOD! As people who are all stuggling with this disease we understand all the painful feeilings and should be ashamed not to be happy for any survivor even it that person made a choice we personally might not have.
I do not understand the double standard however. If you use alternative treatment you are always the fluke or suddenly we realize there is a 50/50 chance to begin with and so if it works it must be solely that you would have survived regardless. If you take the standard treatmnet then any survival is TOTALLY attributed to the the treatment and the 50/50 idea goes out the window. We forget in our increased stats it is the combination of treatments (for most) and we really don't know if it was all or certain ones as it varies with each individual.
There are thousands of breast cancer survivor stories/blogs by conventionally treated people and that is fine but if someone choses a different route they are told shame on you for telling your story? You are harming people. You have every right to disaggree but please have some tact and kindness in your approach for goodness sakes. This is supposed to be a place of comfort for women with BC and I have seen more anger here than anywhere in most of my life. I understand people want to be "right" but at what cost. Would you really look that person in the eye and be so cruel? If so you should ask yourself would you want someone to be that cruel to me. I am just sick at all the meanness I have seen on here. My health needed me to take a break from here, how sad. Why is it so hard for people to be respectful of others feelings when disagreeing??
I appoligize to anyone who has been hurt on here. We are adults and it is so sad we are not behaving like such. I expect more from my kids I teach them the choice of words can change peoples responses (well I give the 3 year old better words to get what she wants and she sees how it works
) wish some on here could learn from that. Do you really think bullying people is going to get them to listen???I am just sickened at the meanness on here..........
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WOM - read PetJunkie's post above. Grade 3 DCIS HER2+ve node negative that metastasized in 2 years!!! She didn't have chemo as it's not the standard treatment for DCIS and look what's happened. I wrote and thanked her for sharing her story because I'm sure it's not easy for her.
You need to realise we care about you and your family. I've re-read the last couple of pages and I think you are reading too much into some of the comments. We're not nasty - we just care!!!
Sue
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I'm still stuck on FEAR. We're all afraid when we get our diagnosis. But that fear spurs us to action (well, most of us, anyway) and to make decisions. Some may say these decisions are thus fear-based. But for most of us it becomes a moment of clarity and resolve. We all come from different places in our lives, different values that point us toward making the decisions we make. There is nothing to be gained by disrespecting ANYONE's choice, whether we would have done the same or not. None of us has true empathy and has walked in the other's shoes.
But when people ask for our opinions of their pathology and proposed treatment, then it's fair game, as I see it.
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I also had a 9cm DCIS spread throughout in 2008. I also had 10 weeks of highest dose radiation in 1995 for Hodgkin's Disease. I did not do mastectomy (they wanted a double) and I am good............
Kimberly
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Suspen I respectfully disagree. Hollie's was accused of harming others and her book was put through the ringer as well as her choices. Someone went as far as to attacking her index?? If only 9-10ths of books could get such scrutiny..lol So she used a 2002 book funny part is if the book was so correct at the time why is it so quickly out of date unless there are flaws? People attacked her for having surgery claiming that this means she was healed by the surgery thus medical treatment. If that is the case I am good to go..lol She never disputed or hid that but people who haven't read it act like it is a huge discovery. That idea could also be used in the flip side as NO one who recieved conventional did so with out the very crux of alternative treatment.. The own bodies immune systems power. In the end it is what we all rely on to finalize the fix for lack of better words right now. So I guess you could say that we don't differ as much as you think.
In regards to her book there was criticizim of her reviews and not nice might I add. Why can't a simple discussion of facts be held without directly attaking the person. This book writer is on this forum. She came to share her story because it was asked not to sell her book. If she was surfing to sell books it surely wouldn't have taken 40 pages for her to get involved. Saying those who do alternative don't have the right to be called brave or shall I sat that chemo patients are the brave ones instead. They are both brave they just face different battles.
Anne you are very right if one askes for opinions on pathology and treatment then they should expect to hear such
. However on this thread there is a different trend. I asked for survivors. I shared a bit about my story which may have been a mistake. I got a bunch or responses telling me what I needed to do based on my diagnosis dispite not asking for this information. Which is fine as I don't fear knowledge. I have even asked specific Q's since and got great ideas. Ruth and Hollie shared their experience and got told how dangerous their decisions were and how wrong they were. Their choices were disected and analyzed and neither person asked for any opinions but sure got them..lol Ruth was called bipolar or something like that for multiple posts. Did anyone ever think she was just so into the discussion that she hit send to quickly? I sure have missed ideas but now I fear doing a second post as I might be called crazy too. Heck I also missed my idea that if you die from alternative then it is all your fault, the treatment failed you but if you die during standard of care they have done all they can do. Somehow we forget for some these treatments kill them as they are in the not so lucky group. There is no questioning of how do you feel knowing the treatment killed that person. My friends mom died do to the port kinking and it caused an infection. I know my father in law lost perscious time as the chemo failed him. It happens but we just accept it without the same scrutiny we put on alternative treatment.
I also don't understand why in order to be brave you must suffer side effects? There are things people have found to decrease those side effects so that those doing standard treatment do not have to suffer as much. We should be demanding to stop the suffering anyway we can and as long as we defend this there will be no need for change. Why do we have to suffer needlessly? What we should be doing is changing laws. If honey stops kids coughs without putting kids at risk to side effects than that is what should be presribed but we will put our kids at risk instead because a law says you can't perscribe honey??????? Someone said we just need to add some stuff to make it a drug. WHY do we have to add things if it works. Without a market we don't do studies so we miss out on things that can help us....sad
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I must be missing something...there is no law that says honey cannot be prescirbed. Doctors can prescibe it if they want to.
With regards to honey or other foods, the only thing the law prohibits is that it cannot be labeled as a drug - that is with claims it can treat a disease. Regulations prohibit labeling foods or supplements from be labeled as drugs unless there is well documented proof (usually 2 controlled clinical studies) submitted to and accepted by FDA that the drug is effective in treating the disease. Also items labeled as drugs must be manufactured or packaged and tested under very controlled conditions to ensure their identidy, purity and performance (for example tablet disintegration if the item sold in that form).
As long as items are not labeled as drugs, there is no law prohibiting their presciption.
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And the circle continues....
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WOM, I looked up essiac on the Memorial Sloan Kettering Cancer Center website (they have an integrative medicine section where you can look up herbs and supplements) and it says that essiac was shown to stimulate breast cancer cells. So you need to be careful, (I am not trying to be mean.)
I should say chemotherapy, and/or hercepitin, is the only thing, besides radiation, that I know of that can "treat" (what word should I use here) aggressive, grade 3 breast cancers like HER2+ or triple negative. I think you have to "fight fire with fire". I know you are looking for alternative, more gentle treatments, I understand that, but I just don't think there is much out there.
I know that this thread has some sarcastic, snarky posters, but I don't see the meanness that you see. We're talking about life and death and that brings out some strong feelings.
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There is seriously something wrong here. My belief is that BCO is way too large. Too much input from non-medical experts who have become preachers. When one door opens for us, we find that another one closes. I had that experience when I went on the DCIS forum. I was told to leave because I was diagnosed with IDC. What a bunch of bologna. Breast cancer is breast cancer. What's happened is that with all the new and so-called improved diagnostic testing, they are able to classify each type of cancer according to their results. Breasts have taken on a whole new meaning these days. We are walking around with weapons of mass destruction. We can't be comfortable in our own skin. We are beating our breasts to death and beating each other up because we believe that we have the right answer, and gosh darn it I'm going to convince you that you're going to die because you're not following my protocol.
And on another subject, these amazing surgeons can't seem to get clean margins. Why the hell not? Dig a little deeper and not in my pockets. Maybe you can find more cancer cells before you make more money off of my second and possibly third surgeries. Money, Money, Money, Money. It's what it's all about. You better believe it!
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Yes, there are snarking, mocking and mean posters on that come over from the conventional forums to bully the vulnerable here.
Life and death situations bring out the meanness of people who were already mean.
Life and death situations bring out the caring in people who were already caring.
I had no idea there were so many bullies on the internet until I came to this BCO forum. Since joining BCO, I learned from my local support group that BCO is known for this. Sad. It gives the whole organization a bad name. I'm sure BCO didn't realize they would offer a safe haven for bullies.
Kindness and strength to you Wornoutmom! You will find your path...
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Perhaps the problem is that this forum has the word "complementary" in it...kind of means that women who choose conventional as well as alternative are allowed to post, you know?
And interestingly, the snarking, mocking mean posters go both ways...not sure if you can, or want, to see that...
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MOM - Are you saying that your surgeon purposely left DCIS in your breast so he/she could make additional $$ on the re-excision? You would think if he were that desparate to make a sale, he would have called you back.
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I agree with Orange1 on this as doctors must keep statistical records on re-excisions, lymphedema, nerve cutting etc. Complication rates are usually required to be reported if the surgeon is affiliated with any reputable hospital.
It doesn't look good when a large percentage of a doctor's patients require re-excision. My surgeon warned me she was of the school of surgeons who took a wide excision. Other surgeons will take narrower excisions because they want to preserve as much of the breast as possible.
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Orange, I forgot to mention the fact that she left the hospital to take a position in another state. And yes, I do believe it's about the $$. That's why they cringe when you mention the possibility of alternative treatment.
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1. Someone is making money off of alternative treatment. Lots of someones and lots of money.
2. I don't think anyone here is buying the idea that surgeons purposely leave in cancer so they can go back. You have nothing to base that on, you just pulled it out of thin air.
3. Why were you in the DCIS section if you didn't have DCIS? What did you say that upset them? breast cancer is not all the same. Stage IV is not stage I is not DCIS.
4. MOM I don't think anyone here has beat you up about your treatment decisions. WOM came on with a very aggressive and advanced cancer and young children and asked for opinions -- most of which she hasn't liked -- but, OK, she's the one who has been urged to pursue conventional treatment. You, on the other hand, not so much. Do you want us to urge you to fight to survive as well?
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Sorry Lyn I hadn't looked up Essiac for breast cancer and no my father in law didn't have this kind of cancer. You had just said shrink a tumor and I didn't know you ment for BC..duh we are on a bc forum...lol I just know they watched it shirk his tumor and the doctor saw it work as well. For breast cancer I have seen a lot about hypothermia for shrinking tumors. I also dug a little deeper into the actual study as for me I never trust looking at only a the summary and there are some interesting things to consider. At pub med they studied floressence along with essiac and various strengths. For instance it said that "exposure of the tonics produced a dose -dependant increase in ER dependant luciferase. I would want to know why a study had so many different forms of what is being tested and what the exact Essiac they are using since if you google Essiac you will find many different forms. What were the results at each strenght as we know many drugs have levels they are safe at and not. I have seen so much emphasis on how studies are conducted and this seems to rise a red flag. Exact brands, mixes and sticking to one test. These should not been lumped as one.
I only had a few minutes but will continue to research this. I in no way consider this mean. We all need to be careful with the information we find on the internet. I wish it was as simple as looking to one place to find the answers or relying on summaries
. I have found a few things overlap on both sides and have a feeling this is like the old saying the truth lies somewhere in the middle..lol0
