Calling all "I hate cancer" club members... alternative treatment questions

[Jackie in NE]

I just returned home from spending a few days with my 82 yr. old mom. She has been diagnosed with mouth cancer. (Never smoked a day in her life.) Her cancer is on one side of her mouth in her gums. An MRI does not show that it has metastized, nor can it be seen in her jaw bone.

 

My question is about treatment options.

 

Mom was first referred to a respected surgeon at a teaching hospital. He wanted to perform a radical surgery which would replace her jaw bone with some bone out of her hip. He said "We have to assume the cancer is in the bone". Now, my mom dances about 5 days/week. This is her LIFE. We felt (My brother and I) that such a radical surgery was not in her best interest. My mom is willing to do whatever we think is best. She simply does not want to make the decision. She is overwhelmed.

 

There are a few other facts, that I won't go into right now, that cause us to think that this surgeon only wants my dm to have this surgery because she is an interesting patient, and his focus is on research. In the end, though, my brother asked for my mom's records so that we could get a 2nd opinion. My mother was scheduled for the surgery at the time. Lo and behold, the surgeon told us that after review by the tumor board, they could not agree that she actually had cancer. Sheesh!

 

Fast forward to the current situation. My brother heard about a Dr. who mixes conventional treatments with holistic treatments. My dm first tried the holistic route with him. None of it is covered by insurance. She has paid $20,000 to him so far. After 6 months of this holistic treatment which includes IV's and 20 or so natural supplements, cancer has actually been detected in the same spot. So, the holistic route didn't prevent the cancer. The current Dr. has started her on chemotherapy along with the holistic stuff. I agree with this in theory.... you know, keeping the body strong so that it can fight off the cancer while at the same time zapping the cancer cells with poison.

 

Now, my brother lives very near to my dm. I live about 1000 miles away. So this trip I just took was my first to this Dr.'s office. I was not impressed. He and his staff cannot agree on whether or not she will have side effects from chemotherapy. He says no, his "nurse" (I don't even know if she's actually a nurse, but she IS his dil) says yes. He first said treatment would run about 6 months, then told us 2-3 months when we were in his office. When asked about his success rate with the current method of treatment he said "Oh, pretty good." When pressed for an actual number or %, he said "Oh, hard to say, they're all so different".

 

At this point, I'm losing confidence in this guy pretty fast. He is "certified" in oncology...... but by who? His certifications look authentic, but how do I know for sure? He practices medicine in Nevada because Calif. will not allow him to do what he does there.

 

I am not against alternative medicine. I am open to the idea. But this guy seems to really fail in the execution. He has large turnover at his clinic, which to me is a sign of poor leadership. The mixed messages from him and his staff is troubling. His reluctance to actually be specific about success rates is troubling.

 

Like many alternative medicine guys, he seems to have an axe to grind with the medical establishment. He constantly bad-mouths the establishment.

 

Anyway, I have set up an appointment for my Mom at the Mayo clinic. I want to see what they think.

 

But how do I find out more about her current Dr., his certifications (or lack thereof), and his treatment theories? Should I put my uneasiness aside and just try to have faith in this method? Do any of you have any experience with alternative treatments? How do you find a good one?

 

Obviously, I have a million questions. And right now, I have to leave this and go pick up dd.

 

But I so respect the wisdom that is present on these boards. Any information would be greatly appreciated!

 

Thanks, Jackie

[Sara R]

I researched a little into alternatives when I was going through treatment. Some things have science backing them up (I like science), and other things don't. That makes it tough. I decided to go with conventional treatment because I am young and have a lot that I need to stick around and finish (i.e. kid raising), and because I didn't trust many of the alternative treatments.

 

If I were 82, I think I would have chosen differently. At that age cancer usually spreads more slowly than in younger people. There would also be the question of how much extra time my misery and money was actually buying me, since at age 82 I would be about at my life expectancy. What would likely happen if she doesn't get treated at all? I think that's good to answer that question, so you can compare treatment to the alternative of doing nothing. Her cancer might be so slow-moving that she might die of something else, even without treatment. That's what happened to dh's grandfather with prostate cancer.

[Tree House Academy]

Well, I do hate cancer, but I can't give any advice on the medical front. Just *hugs* to you and you mom!

[Perry]

American Board of Medical Specialtie

 

Click on "Is your doctor certified?"

You have to register, but it's free.

[Spy Car]

Hi Jackie,

 

For two years I worked on a television series focusing on the real-life stories of people with life-treating illnesses (including many types of cancer) who had, in desperation, turned to alternative/holistic modalities to either replace or augment their allopathic/Western medical treatments and had "beaten" their illnesses.

 

One "problem" with our series, from a scientific basis, is that we found "success stories" and worked backwards. This does potentially skew impressions, as someone with a bad result from holistic therapies would never have been profiled. KWIM? And I'm more than a little skeptical of everything.

 

That said. I saw stories, and met alternative physicians (through video) that really impressed me. Both with intellect and their reasoning for "why" the modalities they were trying were working.

 

An associate did several stories on an alternative cancer specialist in Nevada. I did not work on the stories with this doctor, but we still worked pretty closely on the series and from what I saw (and was told by others) this doctor in Nevada (Reno) was one of the most impressive alternative doctors we ever encountered.

 

I think there was consensus in our small staff of film-makers that if we were ever in "deep-trouble" with cancer, that this doctor in Reno would be someone we would turn to.

 

I understand the anxiety of trying to choose the right path. My own inclination is strongly towards "science" and science-based traditional medicine. If it was my mother I'd probably be at the Mayo Clinic (or similar).

 

But I've seen some amazing practitioners give hope to hopeless people. People who were told they had months to live. And I have been extremely impressed by several doctors (including more than a few with full "medical degrees") who have tried new and alternative methods (such as the IV infusions you mention) with outstanding results. If I were out of options, or maybe before then, there are a few practitioners I might call upon for help.

 

I hope this post didn't just muddy the waters of your mind. What a decision to make. Best wishes to you, your mother and your family at this trying time.

 

If I can be of further help, feel free to PM me.

 

Bill

[Mommyof4ks]

I don't know much about the adult cancer world since those treatments don't apply to kids, but in the pediatric cancer world our 'conventional' doctors use some alternative treatments to help with side effects. Some alternatives can cancel out chemotherapy, so the medical doc needs to know what is being done on the alternative front anyway. My point is that in our experience conventional docs are not against alternatives that complement and work. At your grandmother's age I don't think the docs would be against letting her try things that would not do her any harm, but I am not a doctor and don't know that for sure.

 

Mayo is a wonderful facility from what I have heard, and I would openly ask about ALL options, and I suspect you will not get the run around there.

 

Checkout http://www.chemocare.com/bio/, http://www.nih.com, and http://www.cancer.org

 

Another place you might look is http://www.acor.org and join a list serve for your grandmother's cancer to find out what others have done in that situation and how it turned out. It is helpful to talk with others that have been there and done that.

 

Hugs to your family as you all make such tough decisions.

[Jackie in NE]

Thanks Spy Car. I did PM you......

[PiCO]

I am in the "I hate cancer" club- I will answer questions I have experience with:

 

There are a few other facts, that I won't go into right now, that cause us to think that this surgeon only wants my dm to have this surgery because she is an interesting patient, and his focus is on research. In the end, though, my brother asked for my mom's records so that we could get a 2nd opinion. My mother was scheduled for the surgery at the time. Lo and behold, the surgeon told us that after review by the tumor board, they could not agree that she actually had cancer. Sheesh!

 

I definitely think a second opinion is warranted here. Maybe a third. Find out what the standard of care is for your mom's cancer, and then decide wether or not to participate in someone's science experiment. But just so you know- a lot of cancer treatment is still in the science experiment stage, because there is no known cure.

 

He and his staff cannot agree on whether or not she will have side effects from chemotherapy. He says no, his "nurse" (I don't even know if she's actually a nurse, but she IS his dil) says yes. He first said treatment would run about 6 months, then told us 2-3 months when we were in his office. When asked about his success rate with the current method of treatment he said "Oh, pretty good." When pressed for an actual number or %, he said "Oh, hard to say, they're all so different".

 

That's because everyone reacts differently to chemo. They really don't know how a particular person will react until they start. Also, there are a lot of different chemo protocalls- I don't think it's unusual to be told 6 months and have it change to 2-3 months. (Based on conversations with people in chemo while dh was being treated.) Science experiment.

 

At this point, I'm losing confidence in this guy pretty fast. He is "certified" in oncology...... but by who? His certifications look authentic, but how do I know for sure? He practices medicine in Nevada because Calif. will not allow him to do what he does there.

 

Always good to check credentials- others have given good links.

 

Like many alternative medicine guys, he seems to have an axe to grind with the medical establishment. He constantly bad-mouths the establishment.

 

This is a red flag for me.