Having difficulty making decision

Hi Cathie~

So sorry you are struggling. It is very hard to hold up against the tide of pressure from Western style docs. I have gained much support and good info at:

http://crazysexycancer.com

Also, I am doing the Ph balance diet to prevent cancer coming back. It is THE way, as far as I can see, from many months of research. Have you read or followed the Ph Miracle book? Do you test your Ph everyday? The water is vital, but you also need to do at least 70% raw and gentle exercise as well.

I also refused Tamoxifen.I am in a city where I do not have to see an onc, I have a naturpath doc that specializes in breast cancer. Very helpful!

If your doc owon't listen, change onc. Maybe there isn't one who is 100% into supplements, but I bet you can find one that isn't an asshole about it and making you feel so awful and pressured. That feeling is no good from healing.

I hope something I wrote helps. You are not alone. Take a deep breath. You can do this.

peace & healing,

Tay

Oncologists only make recommendations. They do this from a consensus. The consensus is not evidenced-based. It means they made a decision as a group and came up with "guidelines." Period. As much as you like the nurses, and they were supportive to you at a vulnerable time in your life, they are not your friends. They work for the boss.

There are many, many women who have refused Tamox and Arimidex, most of them after trying it and feeling depressed, old and haggard.

You need to get in an online support group which reflects your feelings.

Remember, Elizabeth Edwards had the best doctors from three "top" medical centers and they recommended an excessive treatment that turned out NOT to have any survival advantage according to medical studies just released.

Dr. Atkins used to say, rich people get the worst medical care because they follow the herd.

Good luck following yoour heart,

Anom 

I don't know why your husband wouldnt' support natural treatments. After all, you have proof that they work, right? You have results of controlled, randomized trials to show him.

I don't know whether he won't follow you as a patient if you refuse the course he has recommended. You can say, you can't in good concience follow the recommended course but you would like him to follow you with testing. If he refuses, you need to find another oncologist or other medical practitioner.

Your husband needs to research from actual research studies how much, if any, benefit is to be gained. Once he sees the "absolute survival" statistics rather than the "relative risk" statistics, he may agree with your decision. But he has to see the stats in black in white, not just take a doctor's word for it. Breast cancer is not like lymphoma where the decisions are clear-cut.

And avoid web sites which don't tell you the absolute stats. Mayo Clinic web site is notorious for misleading stats.

As far as online groups, you can go to Yahoo Groups and search for groups doing Alternative Therapies for Breast Cancer and sign up for as many as you can to evaluate them. Personally, I like the Amazon Group which is not on Yahoo but it has a large number of educated long-term survivors. Visit:

www.breastcancerchoices.org/amazon

You can lurk on all of the different groups and see which one offers the support and information you need.

Good luck, dear Cathie. We will find you companions for this journey. They make all the difference.

Anom

I can provide a few links, since I have just been researching this today, in preparation for another meeting with my oncologist on Tuesday

"Diindolylmethane (DIM), a biologically active congener of indole-3-carbinol (I3C) derived from cruciferous vegetables, is a promising agent for the prevention of estrogen-sensitive cancers."

From: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1869626 

"I3C is a naturally occurring compound found in cruciferous vegetables that is known to stimulate detoxifying enzymes in the gut and liver. Many studies indicate its potential value as a chemopreventive agent for breast cancer through its estrogen receptor (ER) modulating effect. I3C also down-regulates the expression of the estrogen-responsive genes pS2 and cathepsin-D and up-regulates BRAC1."

From: http://www.mskcc.org/mskcc/html/69263.cfm

"Dietary indole-3-carbinol (I3C) has clinical benefits for bothcervical cancer and laryngeal papillomatosis, and causes apoptosisof breast cancer cells in vitro."

From: http://jn.nutrition.org/cgi/content/abstract/131/12/3294

I stopped taking tamoxifen in january this year.  It was just shortly after seeing my onc, so I didn't have to fess up until june.  I was apprehensive about his reaction.  I wondered if he might refuse to see me any more, and I wondered if I would see that as a blessing or calamity. 

As it turned out, he said practically nothing.  He didn't chastise me, didn't recommend a different treatment, didn't give me new statistics of what my risk of recurrence might be.  I felt kind of relieved in one sense.  In another sense, I wonder about the quality of care I get from his office overall.  All he said was 'most women handle tamoxifen just fine, but some find the side effects intolerable.'  I sort of wondered why was I taking it in the first place if it's barely worthy of comment when stop?  I suspect more than anything that this is yet another example of how low the bar is set by medical professionals in my community.  

I feel like the things I'm doing are more beneficial to my health than tamoxifen ever was.  I juice twice a day and often eat ground flaxseed, flaxseed oil and yogurt for breakfast.  I believe my fatigue is caused by hypothyroidism and one of these days my chemistry will get into balance and I'll have life in my life again.  I dont know anything about lupron, but what I learned about arimidex made me very leery of it. 

I see your dx is triple positive, so that must be why lupron is in your possible mix.   Keep doing your research and you'll feel confident in the decision you end up with.  

Hi Cathie,

  Im sorry it didnt come out right.  I meant since you are so against taking Tamox or an AI.

I do understand you are all for the Natural way.

Pam

Thanks for the links & Tamox substitutes Lisa & Stacey

I really don't believe that "eating the right things" makes much difference in terms of recurrence. We are well out of the barn here ... it's far too late to be worrying about the door.

There are some indications that certain diets are conducive to lower rates of breast cancer, but it is naive to think that you're going to fix a lifetime of bad habits and exposure to carcinogens by starting to eat well now. These places (Japan, Mediterranean, Mexico) where breast cancer rates are lower, they live and eat differently their whole lives. That's why their rates are lower. One day in your 40s or 50s, deciding to eat organic, or macrobiotic, or whatever ... IMHO and that of most specialists, isn't going to make much difference in terms of the cancer coming back or a new one forming. We have a 20-40% chance of a new breast cancer forming (not a recurrence). It this happens, it's likely from the same thing that caused the first occurrence, and that is likely something we were exposed to 10 or 20 years ago or more.

As for supplements, take them if it makes you feel happy. But don't expect magic out of them.

Cancer is really no place for magical thinking. But some people don't seem to be able to do otherwise. 

I'm not sure why the last two posters are on this board giving pro-conventional opinions.

We don't need your permission or blessings to take a different course.

Hi all:

The following is a cut and paste of a post I wrote on another thread dealing with the decision to use or forego tamoxifen after an initial dx of breast cancer.  I know there are some who will be annoyed by my intrusion into the all natural way of thinking, and I am sorry for that.  However, I am not against alternative and complementary methods of beating this damn disease.  In fact, I have been seeing a CAM doctor in NYC for almost five years.  I only stopped going to him because he was way too negative with me during our last appointment, which is the last thing I needed or expected from him.  I take supplements, exercize, eat a particular way, etc... but do so in conjunction with mainstream medicine.  All I ask is that you read this with a little objectivity and understand that I wish the best for all of us. 

 I would like to share my Tamoxifen story with you to perhaps add a different perspective.  I was dx'ed with Stage II IDC with no node involvement in Jan 2001.  I had the standard lumpectomy with sentinel node biopsy, Adriamycin and Cytoxin and then 6 weeks of radiation.  My onc then wanted me to go on Tamoxifen which I refused to do.  The reason for the refusal was that when I was 18, I developed a blood clot that dislodged and caused me to lose my eyesight in my left eye for a day on two separate occasions.  The cause was never discovered despite test after test.  Finally, I was advised to never go on birth control pills due to the possible side effects of blood clots.  I used the same reasoning in refusing to go on Tamoxifen.

Fast forward to Jan. 2004, when I was diagnosed with mets to my lungs.  I was put into artificial menopause with Zolodex and went on Femara.  That kept me good for three years but in the last two, nothing has worked.  Two different chemos failed to halt progression (which then went to my liver), and two additional aromatase inhibitors failed as well.  My consulting doctor in Boston was just about to recommend yet another chemo when he asked me to tell him once again why I never went on Tamoxifen.  After reexplaining it to him, he said, "I would call that "soft" reasoning.  I think you should give it a try before we resort to yet another chemo."

Well, I did just that and.... you guessed it.  After two solid years of progression (although slow), that little pill called Tamoxifen is shrinking my metastatic tumors.  I really still cannot believe it.  I also take it at night and have had no problems with it, although it has only been three months that I am on it.

So, the moral of my long winded tale?  I truly believe if I had just taken the damn drug like my onc wanted me to in 2001, who knows if the cancer would have come back... perhaps I would still be cancer free.  All drugs that fight BC have side effects.  However, I would like nothing more than to have NONE of you join "the club that no one wants to belong to" i.e. the Stage IV club.

You guys do not know what hell truly is until you have heard that horrible word... recurrence.  So, my advice -- if asked for -- would be to take the drug.

Thanks for taking the time to read this.

With caring and hope,

Robin   

Cathy,  I know exactly how you feel.  When I was first diagnosed  I felt the same way.  I did not want to do any chemo, I had watched my mother-in-law go through the hoops and die anyways.

I agonized and searched the internet for any hope that had some real stats behind it and I didn't find anything.  I had always been into CAM and gathered my own herbs, took supplements, made concoctions, believed in balance and so forth.  My husband had colorectal cancer that bordered on stage iv and took the CAM route first...........he was very healthy and so was his tumour.  We spent a fortune and I had a fulltime job in the kitchen.  The only thing that saved him was the 5-FU.  Bitch that it is.

I say this because I wanted truth and not get hung up on my own idealism.  We all search our hearts and hope to make the right decision.  You can continue to use CAM in conjunction with tamoxifen.  For instance ground flax enhances Tamoxifen.  Using meditation, yoga, vitamins and proper nutrition can all be incorporated.  I even went to a Native healer.  Did it work?? I don't know.  I had a hard time with tamoxifen but LOTS of women don't.  I found I don't fully metabolize it.  I had used Indole 3 Carbinol but my liver enzymes were high and there is some thought that it creates liver tumours.  Google "Indole 3 Carbinol liver tumors"., so I quit.

There are many posts here and they are all trying to help.  Those for or against are all sharing their experiences and/or beliefs.  Do the research and do it without the emotion of fear. Make sure there is a true consensus and your info is from reputable sites.  I'm amazed at what some Doctors are spewing, I don't know how they sleep at night.  And in the end, post on the mets board and ask who went alternative and what they did.  People die from conventional tx and they also die from alternative.  This isn't a simple cancer and it can be caused by many things.  Drinking a specific water or taking selenium isn't going to wake up your tumour suppressor gene but they are valuable for good health.

What is toxic is when someone shares their experience out of caring and gets shot down.  She's right, the only thing worse than hearing cancer is recurranace and mets.  I wanted to live so I looked for truth and I tried to look for it with an unbiased mind (which was hard) and this is where I ended up.

When my mother-in-law was diagnosed I sounded just like most of the posters on this thread. I pooh poohed every conventional idea.  Had her juicing, changed her diet and to make a long story short when she went to the naturapath he told her she was already doing everything he would recommend.  I pushed her into CAM therapies and now that I'm going through it and hopefully a little wiser, I feel really bad.  She did all the conventional but the embarassment comes from how I lectured her and about what.  She was my best friend.

If you or anyone else finds this post negative than I'm sorry but it is my truth and there was nothing in the original post that said you only wanted to hear positive stuff about about natural alternatives.  Whatever decision you make I do hope it is successful and hope to be reading your posts years from now.

jan

Sorry 4thefather, I posted before I read your post.  I just thought that two sides of the story were better than one.  Everybody needs to decide for themselves.  I know how I'm deciding.  My life is too important to me to trust it to unproven treatments and anecdotal evidence.  But I am just beginning this journey.