natural girls
Comments
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Thanks all! I was 99% against radiation; 1% maybe. I talked with the radiation oncolgist yesterday and when I left her office, I was 55% against; 45% okay with the idea (and husband was somewhat relieved that I seemed to be moving in that direction). I even went so far to check into my health insurance benefits this a.m. to see what the $$$ damages to me would be....not so bad! After more reading last night, this morning and now on this board, I'm 85% against, 15% unsure. What a ride!
Rosemary~ I had read about the brachy early-on and quite frankly, it scared me more than the beam. As I understand it, the zap from the beam is over as soon as the machine is turned off (well, at least that's what "they" say). With brachy, having those little beads implanted in me would freak me out....I can't help but think that would be like a slow-release of radiation migrating throughout my whole body. Ick! I'm sure I'm over-reacting to this method (or possibly over-simplifying)...I don't want anyone who has taken this method to second-guess themselves, this is just my own personal observation of brachy.
At any case, it looks like I'm back on my natural path (which feels right for me). Thanks again for all your comments.
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God, those stats on radiation have really depressed me. Wish I had never ever done it. Onc told me at the end that more than likely one third of my left lung is consequently permanently damaged due to the radiation. They said they tried to avoid the heart, but can't know for sure. Radiation felt to me infinately more "invasive" than lumpectomy did. After all, my very cells (healthy cells too) were being invaded and destroyed almost to the point of no return, day after day.... how primitive a treatment is that?
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Calypso, OMG. a third of your lung was dammaged? This makes me sick. I had rads and I can't stand how that area feels. so tight and sore and my pec muscle is just not the same!
I thought I heard/read somewhere that having radiation gave us a 5% survival "boost". Are you all saying even this is not really true? (ugh...)
Spring.
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I'm new to this thread but so glad so be here. I am 63 and will have my last taxotere and cytoxan treatment next week. Oncologist wants me to do the radiation then aromatase inhibitors. I have serious concerns about both and am seriously considering natural alternative treatments. I have had a fairly easy time with chemo due to the supplements from the naturopath and acupuncture, so I know there is a way to proceed forward along this same route. With the aromatase drugs, osteoporosis is a concern. I already have that so my oncologist immediately dispelled my concerns by saying I could receive an annual injection. What's that all about?? My tumor was close to the chest wall and one radiologist I saw said there would be some damage to the lung but "not to worry". Again....what's that all about or WTF? My massage therapist has seen much damage to women who have gone through radiation. Yet the docs keep throwing the recurrence stats at me if I don't go through the "traditional" route. The best outcome, according to stats, is to go on the drug therapy after everything else is completed. I just don't like the idea of completely blocking hormones....not nature's way. Sorry to ramble, but am really happy to read all your comments which will help me to make the right decision. Patti
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Patti, Spring. Calypso-all I can add is that misery loves company, but in this case, I wish others were not in the same club.
I stressed over this for so loooooong. I just want to applaud you all for doing what I did not do and that is ask questions first. I was such a good little patient and every time I would tell my doctors of my concerns they would disregard my worry and tell me to just do what I was told, so I did. Then one day, I was book browsing and came across "The Wisdom of Menopause" by Dr. Cristiane Northrup. I randomly opened the book and it was a page where she was talking about breast cancer. To me this was a sign from above. She said that we all need to listen to our bodies and our bodies will tell us what to do. This was after I had almost finished rads. I reallized that all this angst was coming from my soul. I tossed the bottle of arimidex. I somehow managed to get through the last 2 weeks of rads, and I will never see those doctors again because they did not listen to me. As I said, I made peace with it all, and found doctors who will listen, but it still makes me so mad I did not look at the information sooner. As I said, it is a very personal decision. Do not let any of us talk you into one way or another. Only YOU can decide what is right for YOU.
I might add, the physically I had an "easy" time with rads. My daily walks kept me sane, and the side effects minimal. It is proven that exercise dimishes fatigue, and I never got any. Plus, my burning was not too bad. But my tumor was near the surface and on my right side, farther from my heart so I was lucky. I did have condritis, but found a wonderful chiropractor who was able to get rid of it by massage and ultrasound, after my stupid GP kept insisting I take a bunch of expensive heart and lung tests. The hardest part for me was emotional. I felt so guilty too because I did not have to do chemo (largely because I told my onc she better have a damn good reason for making me do it) and all the women around me were so much worse off. I felt like a big baby, crying all the time. But I survived treatments, thanks to God's little voices in my head.
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Hi ladies,
I have some success to report! I'm feeling better lately. I've checked my temperature twice in the last week, and it's up to 98 degrees! Since I first learned about low body temperature as a symptom of underactive thyroid last year, my temp has been stubbornly stuck between 97.4 and 97.6. My activity is increasing, and the feeling of wading through molasses with every step is waning.
I resisted supplements for a long time because I don't like being a pill taker. Mainly, that's in regard to pharmaceuticals, but I wasn't keen on vitamins either. I revised my stance on supplements and have been taking a small arsenal of various things since last November. Iodine in particular is very difficult to sort because the information is wildly conflicting amongst various sources.
Eventually, I came up with a 'follow the money' guideline. If I read information from a pharmacuetical company, I automatically am suspicious of any claims they make of benefits. If I hear something like "organic produce has same nutrition levels as other produce," I reserve judgement until I see who paid for the study or scrutinize the particulars. Conversely, if people are saying great things about something like vitamin C or iodine, which require no prescription, I feel more likely to believe what they say. Vitamin C especially is widely available, and anyone touting the benefits of C are probably more motivated to speak some truth, whereas the pharmaceuticals are very driven by money.
This is the line of thinking that led me to taking iodine supplements. I've been taking it for months now and learned about 10 weeks ago from a loading test that my absorption rate is lousy. I upped my dose even more last month. And now I'm finally feeling some energy. Also, the bottom of my left foot finally feels normal again. Ever since treatments, it felt like I was walking around with a cotton ball stuck to the bottom of my foot. At last, my foot feels normal again.
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RE fruit consumption, I hadn't even thought about the sugar levels as I drink my daily glass of watermelon juice. I really love watermelon juice! I'm not sure what an insulin spike feels like, so I can't comment on whether I'm having them or not. I learned about watermelon juice from Natalia Rose's book Raw Food Detox Diet. Her comment about watermelon is to keep it separate from other foods and take it on an empty stomach. Under these conditions, it's out of your stomach in about 20 minutes.
Mbrowning, congrats on being a gerson person! That therapy is heavy on carrot and apple juice. Are you aware of any comments about insulin spikes associated with following gerson therapy?
RE radiation, I went through mine before I ever heard of alternative treatments. Since my tumor was near the surface, all the various doctors I saw were unanimous in the opinion I have rads, and I went along with it. Seems like a lot people breeze through rads. I wasnt' one of them. For one thing, I believe it knocked my thyroid out of whack, and those who know me have heard me complain for YEARS about my lack of help from local docs re my fatigue. Another thing I experienced was a sensation that I called my 'bag of rocks.' I felt like I had a bag of rocks sitting on my heart at all times. This got me worried about heart damage, of course, and I started walking every day. The bag of rocks went away after 6 months or so. Oh, and my bones hurt. I really felt like treatments catapulted me into old age. And I had nausea that persisted for a long time after chemo.
The best suggestion I have is to really question your doctors on what does 'benefit' mean in the context you getting rads.
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Melissa,
I know what you mean about brachy being scary. I never even questioned rads because everyone does it. Of course as we come out of our black cloud and get to know more, our questions can be very pointed. But that takes awhile. I just wish they wouldn't rush us to make these decisions. Once the MRI is done and the tumor is out, ok take a breather, give us time. Sheesh.
You sound like you have a happy heart about your decision, and that's important. That and the right foods and vitamins of course.
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Not to change the subject, but I may need to start shopping at whole foods more, even though the prices are outragous. This is the best health care plan I have seen yet-one that speaks to the real issues and is not about government control. Too bad there is no common sense in DC:
http://online.wsj.com/article/SB10001424052970204251404574342170072865070.html
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Interesting article.....my husband and I own a small business and the cost to us as opposed to a group the size of Whole Foods is ridiculous. We did switch to an HSA plan to save us some money but try selling that to an employee that makes $45,000 per year and has to pony up $3,000 before benefits kick in. Each year our health insurance (Anthem who we have been with for over 10 years) has gone up by 10%. This past year (thanks to stupid f-ing breast cancer) our group coverage premium went up 25% and our deductibles went up to $1,500 (single) and 3,000 (family). On top of that each year dozens of covered items are conveniently not covered the following year......last year we get 10 physical therapy visits if needed per occurence, this year only 6. WTF. They are big busines and are making money HAND over FIST. Drives me insane. I wish I had enough money to not even need insurance but I don't
It makes me sick to see that check go out every month............$2,500 per month for two employees with families. I CRINGE whenever we have to hire a new employee and they inquire about our health insurance options.0 -
Melissa, I was told by my doctors that Radiation would decrease my chance of reoccurance by 40%, so I did it. I was somewhat concerned about heart damage since my BC was on my left inner upper breast, but the Rad Onc assured me that this would not happen. He did mention possibility of some lung irritation and slight burn or fatigue. But none of those things happened to me. I continued to work my night shift nursing job full time, and went for Rads early every morning. I used all the creams they provided me, plus aloe as they instructed, and never got any burn or skin problems at all.
I do sometimes think about the possible long term side effects, but don't let myself get crazy over that stuff. I had worried that it would shrink my breast, but that breast which was originally the smaller one, has now become the slightly larger one. When I was at a Natural and Alternative therapy BC conference recently, they did mention that Rads only decrease local reoccurance, at the same site, but does nothing else for us. But I felt better when this woman got up there and spoke about how she refused rads many years ago, and did have more than 1 reoccurance in the same breast, and now, no longer has that breast, but she stated :"I am still alive!" I couldn't help but think that maybe if she'd had Radiation that she might still have that breast . I so don't want to have to go the masectomy route, I like having my natural breasts, that's just me!
Althea, love what you said "If I die, I want to die pretty." One of the many reasons why I told my Onc I would refuse the aromotase inhibitors once I'm post menopausal is that I don't want a complete loss of estrogen and the aging skin and thinning hair that would probably come with it! Such vanity!
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Spring and Rose,
The 40% risk reduction figure is a relative risk figure. This absoultely DOES NOT MEAN 40 out of a 100 women will not recur because of radiotherapy. It means that in the first five years there is a 40% reduction compared to the very few no rads women who would have a local recurrence. So the real risk is 40% of the approximately 12 women who would recur in that time window.
So 40% of 12 translates into (approximating again) 5 women out of 100 won't get a local recurrence because they had their breast radiated. And radiation offers no survival advantage in death from breast cancer. But there is a cardiovascular risk increase.
So 100% of the radiated women will expose themselves to life threatening cardio risk so that 5% will avoid a local recurrence that wouldn't have killed them anyway.
If you do not die of breast cancer after radiotherapy but die of cardiovascular weakening, you are considered a breast cancer radiotherapy success story.
That is why when the doctors say we will get a "benefit" we need to ask what the benefit actually refers to. And we need to ask for the "all cause mortality" figure or the "overall survival" figure.
I was also given the 40% number from a doctor I respected at the time. I now realize I was completely misled. Because almost anybody is going to think the number refers to 40% of 100!
And the radiotherapist I consulted told me the only side effect was "sunburn."
We can only go from here and be wary of any statistic we are given.
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I wanted to report my experience with rads. I did look into both the stats (which I can look up again but I remember being significant) and the risks. And I was clear at the time on relative vs absolute risk. My tumor was on my left side and I have a heart condition (that doesn't trouble me much at all)--so I was very concerned. The rad onc I saw was very careful that I knew how it worked, how they mapped it and how they protected my heart and lung. They actually time the radiation so that it only comes on when you breathe in b/c at that point your heart moves down and away from the breast so less exposure. Also I saw by the map that only a teeny tiny sliver of lung would be hit. I was comfortable with the treatment plan and went thru radiation just fine. Only minor fatigue and I walked almost every day which helped--and drank lots of water and ate well. I am slightly tighter on my left side but with regular exercise, it loosens right up and I have full range of motion, strength, etc.
One reason I was especially glad we were doing radiation as that mine turned out to be multi-focal--the surgeon found a very small second tumor there as well. That is another reason to do rads--should knock out any other tumors too small to detect.
I will have to look up the stats again but I know they are significant--I thought for survival as well but I definitely want to lower my risk for recurrence as well! Not only to not have to go thru it again but I don't want to take the risk of another tumor possibly spreading...
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Althea~
I'm not a Gerson person, I'm a Budwigger. Also, after reading more and more on these threads about Iodine and DIM, I've started taking both, kind of. I'm starting the DIM slowly (1 pill twice/day with each of my FO/CC smoothies. At the same time, I'm taking organic kelp power for iodine...not quite ready to go with Iodoral as I'm very new to reading on the whole iodine issue and need to make sure it's right for me. Feeling more and more confident about refusing rads. I had resigned myself long ago to no radiation, no tamoxifen, but the pressure from docs started fast and furious in the past week. I appreciate that they are doing what they think is right, but my body says otherwise. Melissa
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Hi, I have a question for Vivre.
I've been on tamoxifen for about 18 months. I don't take any other medications and try to be as "natural" as possible--organic, healthy food......
Anyway, I've always had just a little bit of ambivalence about tamoxifen and your remark really struck me. You said:
"Also, new studies show that those who take tamox actually have a higher recurrance rate after 5 years."
I'm very curious--could you please point me in the right direction to find that information/studies?
Thanks!
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Hoping Here is one article I saved. I am still looking for the more recent one that talks about tamox actually causing more risk after 5 years. It also says it stops being protective. I can't remember where I read it but will keep looking. The third link references a Duke study. Maybe that is what I read about.
http://www.all-natural.com/tamox.html
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Deanna, thank you for offering. I'm still trying to search for this stuff. I believe it's the one called Rheum Rhaponticum, not rheum palmatum, which is the one that keeps popping up for sale. I'm also finding something called turkey rhubarb, but I don't think that this is it either.
I know that it's been studied in Germany. There is an article on Web MD about it. I certainly would appreciate it you could find it, as I'm not doing too well in my search.
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Vivre--thanks so much for the links. There's so much to consider when making these decisions about our health.
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Vivre - I also thank you for the links above. My onc is suggesting arimidex for me since I am post menopausal. Do you know of similar information concerning this drug? Thanks for sharing your knowledge.
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Vivre - I also thank you for the links above. My onc is suggesting arimidex for me since I am post menopausal. Do you know of similar information concerning this drug? Thanks for sharing your knowledge.
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Not that I am a drug-pusher by any means but I find some of that info on those links to be odd--like this one:
Strangely enough, when tamoxifen is consumed for more than five years, its benefits may be reversed, according to a Duke University Medical Center study.
That is either not true or they pulled one piece of data out of context. I read up on all the studies on tamox before taking it and don't remember seeing anything like that. I know there are sites that are very anti-tamox for a variety of reasons so I would suggest to anyone thinking of taking it to make sure to read a variety of sources to get a complete picture or at least the full spectrum of info available. Do your own research.
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http://www.intellihealth.com/IH/ihtIH?c=235036&t=7228&p=~br,IHW|~st,333|~r,WSIHW000|~b,*|
study shows tamox loses it's benefits
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Interesting. That study is 10 yrs old now--I wonder if they have done any follow-up and found out more. What I've read about the 5 yr mark is that the results of taking it 5 vs 10 yrs are so close that it's not worth taking it longer but they hadn't said why. I'll have to try to find out more.
It seems to be contradictory to other studies I've read that show patients on tamoxifen have lower recurrence levels over a 20-yr period than those who haven't taken it--so there is a positive effect even after the 5 yr period of taking it.
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You are right Alli. There is evidence in every direction. Sometimes I feel like we have to hire a detective to get to the facts. But my decision is still based on the fact that they never compare using these drugs to using "natural" preventatives. I wonder why? Every study is done in isolation and most are funded by drug companies themselves, who obviously want to do the studies in a way that will show the benefits of the drugs. In fact, the reason I finally tossed the arimidex was when I realized that they had never even done a double blind study, arimidex vs. no arimidex. The study was arimidex vs tamoxifen, and never even completed because they felt is was "better". It was rushed on to the market in just a few months, after following less the 100 women! No long term studies were done. Then when I was dx, I was told I was a perfect candidate for the new study on arimidex, which I signed up for at the time because I believed the hype. When I started having all kinds of questions and started asking them, I was not getting answers, so I started to research on my own. What I found scared me so much, I told them I would not be taking it. They seemed more upset that I was opting out of the study, than concerned for my health. But I was so relieved to finally make a decision that felt so right for me.
None of us can say what is right or wrong for anyone else. All we can do is help each other find out us much as possible so that we all make educated decisions that we believe in. The placebo effect is strong. I would suggest that anyone who is in a quandary as I was, just keep reading. You will be amazed at how many great books have been written about diet, hormone balance, iodine ,etc. etc., usually from reputable doctors who may not have big studies behind them, but they do have case studies from their own patients. I have read so many books sometimes I cannot keep straight what I read where, but some of my favorites are:
"What Your doctor Doesn't know about Nutrition may be Killing You" by Dr. Ray Strand
"Your Life in Your Hands" by Dr. Jane Plant (PhD)
"The Wisdom of Menopause", by Dr. Cristiane Northrup
"Iodine, why you need it and why you cannot live without it", by Dr. David Brownstein
Preventing Breast Cancer with hormone balance (not exact title) by Dr. John Lee
I could go on and on, but that should be a good start. LOL
I found that reading gave me lots of understanding and reassurance that I was on the right path. It was also very empowering, and helped me to feel that cancer did not need to control my life, and I could control it.
Knowlege is Power.
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Vivre: thanks for posting that link. You are right---there is so much imperfect information out there that it is really hard to know what to do.
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I haven't been on the boards for quite a while - things were going pretty well until the tamox started causing liver enzyme problems. I have been off tamox for three weeks and feel great and will retest liver enzymes next week. I wanted to post my rads experience again for anyone who is looking for an option other than the traditional 33 treatements while on your back - I did rads in April/May of 2008 at NYU Cancer Center with Dr. Silvia Formenti - several of the major cancer centers are doing 15 treatments while in a prone or face down position - the breast hangs down through a cushioned matress and ONLY the breast gets rads - the 15 treatments greatly reduce burning and tissue problems and the prone position ensures that no other major organs receive rads - it was a win win for me.
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Allie and Vivre and all,
I also wondered about why there are no studies comparing Tam. and AI's vs. all the things we're doing like I3C/DIM, no sugar, no dairy, no alcohol, low meat, lots of exercise. etc. Then I realized recently, that most women, even when they've read all the benefits of exercise and lowering BMI, and no diary and lower meat, and no sugar, etc., etc, actually don't do it. It is just really hard for most to stick to, and many really don't want to change their current ways...
I then started wondering if this is why the pharmacutical options are so prevalent. Because in reality, most women won't really do and stick with the natural route.
What are your thoughts on this? It's something that's been knocking around in my mind.
Spring.
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I totally agree with you, Spring! As my husband has become more and more nervous with my decision to forego conventional treatments, he made the comment to me, "you have to do something". My reply, "I am doing something and my something is certainly not the easy way". It would be much easier for me to pop a pill or lie on a radiation table for 5-10 minutes vs. to completely alter my diet and lifestyle. Pre-BC, I had a raging sweet tooth and could down milk like it was water. Post-BC, I eat no refined sugar, no processed foods, no animal products or by-products, no dairy and consume about 90% of my food RAW. In years past, I've tried so many kooky things for weight loss (some the "quick fix", some long-term plans) and nothing ever stuck. Before too long, I'd rather have a cookie vs. be skinny. However, since choosing my natural breast cancer treatment, it's definitely stuck and is now a way of life. The motivation of health/life vs. weight made all the difference. I just wish I would have paid more attention to what I put into my body before BC (food, cosmetics, chemicals, etc.); if I had, it's likely that I wouldn't even be in the BC camp! For whatever reason, this time I didn't choose the "quick-fix", I chose the lifetime commitment to health and I have every confidence that it's the right path! Melissa
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Melissa, good for you! I agree, it is NOT easy to do this. And tonight I had several bites of my husband's cheescake!!! ahhhck!
But I have found several benefits. I have lost weight, I am no longer constipated, and I apparently look younger.
90% raw. Wow.
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Wow, Melissa. I could have said exactly that! At first I too felt that this is "the hard way". It would have been so much easier to just take a pill and be done with it. But as time goes by, and I lost weight for the first time in my life, and feel so great, I no longer feel I am "denying" myself anything. I just like eating this way, and if I do not do some sort of exercise each day, I really miss it. And the thought that good food is good medicine keeps me motivated. I never had any willpower before, but I now do because I have changed my bad habits into good ones. It is so much easier that I ever thought. How I wish we could convince other women about the importance of diet and exercise. But since our doctors do not even back us, it is no surprise that our sisters think it is all a waste. If everyone would just try the natural route, and experience the difference in their quality of life, they would understand. We need to keep encouraging others to give it a try.
The other day I was grouting tile and I got really hot and sweaty and I had a taste for ice cream. (I still buy it for my husband). So I ate some, for the first time in months. Within an hour my stomach was revolting. No more ice cream for me.
But I still have my dark chocolate. I am not ready for matyrdom any time soon!
Spring-I am glad that some women have and take the pharma route. If it saves them then it is good for them. I am just thankful that it is not the only choice we have.
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