New to the site.. Alternative therapies

Hi riveting,

I'm happy that you're doing well and have made your choices regarding treatment. The best any of us can do for ourselves is get to our choices and have confidence in our decisions.

Like yourself, I was Her2/neu 3+ but was hormone negative. So not a candidate for Tamox., Arimidex, etc.. Probably wouldn't have taken it even if I had fit the profile of potentially benefitting from it. I know a few women who experienced a recurrence, new cancer, and/or mets (two who got cervical cancer also) while on Tamoxifen. Yet, many women feel that they benefit from it. Again, it comes down to personal choice and individual experience.

My choice was to combine traditional medical treatment with so-called complementary therapies and I'm still here, 5 years later and doing well. My tumor was 1cm and was palpable...like a little tiny pea rolling round under the skin. I had the Sentinel Lymph Node Dissection and of the 3 nodes taken, only one showed what is known as "micro-metastasis"...very immature cancer cells. My docs put my path slides up on a huge screen and we could actually count 7 of those little cells in one corner of the node effected. Prior to that, my docs thought I would do well with radiation only. However, due to that finding, chemo was recommended, yet the choice was still mine. I researched, got several "2nd opinions, thought long and hard about it and finally decided to have A/C and radiation, post lumpectomy. (During my time of trying to get educated, I also went through periods of anger, crying jags, a bit of a self pity trip...you name it. Fortunately, it all passed quickly and I was able to maintain focus on the matters at hand) One of the most difficult decisions I've ever had to make for myself. Once I'd decided though, I never looked back or 2nd guessed myself. I think I'd have made myself batty, otherwise. (Post chemo, I had 37 rads) I think the most difficult thing is in accepting our choices for the long term. Granted, we often need even more medical care to cope with side effects, yet there's usually no one to blame and no one who holds magic to fix the problem(s) either. Once we decide on a particular surgery, chemo, etc., there's no un-doing that and any short or long term complications/issues with it are part of the package and ultimately need to be accepted. Accepting involves coping and we can't do that very well if we're busy beating ourselves up about the choices we made in the first place. It's sad, but often, women go into procedures/treatments without adequate information because of fear and the push by medical pros to hurry up and make decisions. I'd like to see EVERY oncology practise be required to provide a counselor for every patient, prior to their making any decisions. Someone to provide detailed info on ALL treatments, not just medical, and provide resources for learning more about it. That would be a huge improvement over what we typically have available to us. We're usually left flailing about with no idea where to turn for information aside from what our doc chooses to give us. Too many doctors are too busy to listen and may be too biased in one direction or another and this leaves us all, in our compromised emotional states, in a quandry of what to do and where to start to find information. I'm sorry but there's no way that one doctors opinion is sufficient for anyone dealing with cancer! The legal releases we sign ensure that the doctor's and treatment facilities are not held liable for side effects, etc.. The contract we sign with ourselves however, in our hearts and souls, is the most important one. In my humble opinion. It will set the tone for our attitude and future feelings about any regrets, issues/problems. I have one friend who regrets her mastectomy big time and another friend who is still happy with hers 20 years later. I've another friend who has become bitter about the issues she's had from chemo and now wishes she'd never had it. She's aware of where she is and is in counseling, in addition to many medical appointments to try to address her physical issues, but it's a very difficult position she finds herself in. I think these are exceptions though. Seems that the majority of us are satisfied in knowing that we did the right thing for ourselves, based upon our unique characters, thoughts and feelings, in trying to save our lives and/or try to prevent recurrence/mets, at the time of our diagnosis. Doesn't matter what kind of treatment we chose, because it was the only right choice for us at the time.

I have seen some very good outcomes from alternative therapies and some poor outcomes with traditional medical therapies and vice versa. That's the rip of it all...that no one can tell us, with any certainty, just what our outcome may be, no matter what therapy we choose.
There is that thing called "statistics" which the medical community uses to sort of guide them regarding outcome. It's really all they have to give us when we ask what we can expect. But those stats really don't have much punch for us patients because we've all seen surprising results in many and varied cases which fail to fit any stat category you could find! And those wonderful stories of people who were told years ago to "get their affairs in order" as they were considered terminal, with no hope, yet here those people are, 15 and 20 years later, still managing their affairs here on earth! With cancer, anything is possible and anything is probable and that's my particular thoughts about it. I think stats are nothing more than a tool for the docs. What matters is our attitude and our own convictions about what we choose to do or not to do.

Re the Herceptin: One facility I consulted, recommended it to me as a "trial", back in '01. And worse yet, when I finally said no way, after a week of researching, they actually got an attitude with me! They had been so pleasant, thoughtful and kind previously, but when I rang them and said no, I immediately saw a Jekyl/Hyde posture! It was surprising to me but I was still learning about the "financial interest" side of cancer treatment from the patient perspective. And what I was learning was not, shall we say, confidence inspiring to me. After making my rounds, so to speak. I went back to the first onc. I'd consulted
and got on with making a treatment plan of my own choosing, with her help. She was understanding, a good listener and never pushy. Also, I could call her anytime I had questions while I was still in the decision making process and even years later I can still ask her things about friends' experiences, etc. and we talk about those things freely. I bounced many questions and theories off all my docs and I lucked out big time, especially considering that not one of my doctors was in the same area...not to mention they all practised at different hospitals! My plate was full, emotionally and physically and somehow they had compassion and were able to respond not only as doctors but with that special human element of caring. As I've continued to learn even more since my treatment ended, I'm even more grateful to have had caring doctors. I think the caring is the one thing which stands out as amazing, during my treatment. A good "team" of docs was an invaluable asset. Had I not found that kind of medical professionals, I well may not have had chemo or rads at all.

About the CoQ10...it's a good thing. It's one of the few "dietary supplements" which has been studied extensively and shown to be beneficial to cancer patients. As I'm sure you know it's an element which our bodies produce in abundance when we're young but as we age, its production declines steadily, until we no longer make our own anymore, which typically happens around age 40. Needless to say I take it every day, in addition to my other supplements and naturals. I've not taken the curcumin or artimisinin. Some things I take, I've had to start with lower doses and give my system time to adjust before increasing the dosage to the ideal amount for me and I'm sure you're doing the same. A good ND can guide one well in dosage matters. Certain things, even though they're "natural", can cause tummy upsets and various and sundry other effects if we take too much, too soon. If you go to: www.nci.nih.gov you'll find info about the CoQ10 there. I haven't checked that site in a while for that particular info but know that it previously contained all the research about Enzyme CoQ10. It was one of the few "supplements" they recommended, based on the studies done. The problem arises when the medical community lacks knowledge of herbals/naturals/complementary treatment and proves to be of little, if any help to us at all. Medical community doesn't bother with many studies about these things because a natural substance cannot be patented and the drug companies, unable to get patents, cannot own the rights to it and therefore, it's not economically of any interest to them. In view of that, the FDA does not put their approval on supplements for the same reason. (Interesting though how we do see their "lack of approval" on every bottle, stating that they have not evaluated the product, etc.) We have to remember that the pharma's usually bankroll trials and studies. Considering some of the scandelous upsets within our FDA, here in the USA, over the past year or so, it certainly gives us all pause to think about how much trust we're willing to place in that agency. It seems a frightening jungle really. Thus, we're wise to tread cautiously and carry the largest intellectual stick we can find. My one word of caution is that just because something is "natural", "herbal", "botanical" or considered "inert", does not mean that it is harmless. Just as we each can have a different experience with something as common as aspirin, we can also have unexpected and unanticipated negative reactions to natural products. Even simple foods we've eaten for our entire lives, can suddenly become our bodies' enemy. Since we're all different, we're going to have different responses and experiences with everything, medical or natural.

I know that many women, (including myself) choosing the integrative approach, have benefitted from consulting with an ND (Naturopathic Doctor). They're still not out there in great enough numbers and can be difficult to locate but it's well worth the investment of time and energy!

The only other thing I'd suggest is that you get at least two additional medical opinions regarding recommended treatment for yourself, if you haven't already. Not all docs are created equal and two or three opinions are better than one when cancer is the issue. You may find a medical doctor who is willing to support your chosen Chinese Herbal treatment and continue to do your check ups and labs, etc.. That way, perhaps you'd have the best of both worlds? Just depends on how you feel and what your needs are. For myself, a combination of the two was the only ticket to my peace of mind.
That and a consult with a Nutritionist.

Hope you'll keep us posted and continue to visit here. As a bc survivor you're as welcomed here as any one of us. Your emotional issues and many of your thoughts are surely similar to anyone else who has experienced cancer. That's a huge thing,
I think...emotional support. Those who haven't experienced cancer, just can't quite understand our feelings, thoughts and ramblings about it. And they shouldn't be expected to really. So, hoping you'll continue to share your treatment experiences with us and just where you are, in general. It may well be that more women are choosing the same as yourself and I think it would be great to see more people here who are having alternative treatments...even those who choose no treatment at all. As a sisterhood of sorts, we're not about being judgmental...just here to share whatever info we have and support one another through the tough times we all experience. Ideally embracing our differences, as we embrace one another with human warmth and caring, with everything else being secondary to that. I know that many good friendships have grown from initial meetings on sites like this one. Anything which adds to our lives and gives us the opportunity to add to someone else life is always a great thing!

All the best and I'm hoping that someone who may have also chosen alternative treatment will respond to your post and be able to share more helpful info..

Love, light and laughter,
Ink

Hi Riveting, Nov. 2006 I had a lumptectomy and one lymph node removed.Stage 1,1.5 cm, infiltrating ductal carcinoma, negative lymp node, hormone negative, her-neu-2 positive. I know that I will need the radiation as that goes along with the lumptectomy, but the Oncologist would like for me to have 14 months of chemo, last 3 months herceptin. I have done so much research in the last 4 weeks to help me make my decission on the treatment. I have chosen not to do the chemo, I just feel it's not worth the risks. So the Doctors are calling me back to their office to try to talk me into this. Everyone says you have to have a good attitude about the chemo for it to work, that attitude is just not coming to me. Yes, I'm scared to death and still in shock to say the least. I hope there's people out there that refused chemo and lived to tell about it. The doctors don't have the ones that refused treatment call you. All I seem to get is " whatever it takes to stay alive, I'll do)I want to stay alive just as much as the next lady, but I guess on my own terms.Gainesville