Hi Group,

I hope a lot of you will use this post to express your opinions about this topic. As someone who is going through their second loved one with cancer, I would like to think I've learned a thing or two about cancer treatments. Please understand, these are MY opinions, based on much reading and first-hand experience.

First, I think it is a shame that the patients and families have to have this debate. This is what we pay the doctors for - doctors who should be able to get together and come to a consensus on the most appropriate treatment for a patient. But that is not the case. In my two experiences with cancer, I have encountered more "in-fighting" between radiation oncologists, medical oncologists, and surgeons. To me, a multi-disciplinary approach to cancer which all NCI facilities advocate is nothing more than a way to "spread the wealth" amongst cancer specialists. And one hand doesn't know what the other is doing. So how are the patients and families supposed to know what are the best treatment options?

Something I learned with my husband's cancer was to trust the doctor that you feel most comfortable with - the one who seems to be most informed and concerned about the patient. This should be all of the doctors, but I have not found this not to be true. I have been amused of late that the doctor who I least liked when my mother started her journey (her medical oncologist) has actually been the one who is most responsive to her needs – and gets things done. Even though it was the radiation that left my mom unable to swallow and eat, it was the medical oncologist, not the radiation oncologist, who ordered the PEG placement. And it was the medical oncologist, not the radiation oncologist, who ordered home infusions for dehydration as a result of not taking in enough fluids. When my mother went to her first post-treatment radiation visit, her radiation oncologist was very dismissive of her because of her weakened condition. He dismissed any neck dissection surgery, even though it appears there is disagreement about the existence of remaining cancer in the lymph nodes. I learned this from a doctor at the tumor board who called to tell us of the disagreement, but said that she will be scheduled for the surgery. So where does that leave us in the decision?

We are left debating amongst ourselves- Surgery alone? Surgery & radiation? Surgery, radiation and chemo? Radiation and/or chemo? After reading and exchanging ideas with others, we also have to factor in our own personal feelings and convictions – how much can we tolerate-physically and emotionally? What are our feelings about life in general – quantity or quality? And some decisions are based on the attitudes of the type of cancer – even though lung cancer is the leading cause of death from cancer, it is woefully under funded compared to breast, colon, and prostate cancer. And since oral cancers comprise a small percent of all cancers, it too is under funded. So we are left with the same ole, same ole – doing things the way we've always done them – which may not be the best way for the patient.

Sorry for the length of this post – as you can tell, this is a sore subject with me. I hope I have not offended anyone. This has simply been my reality in recent years.

Cynthia

Cynthia, I doubt there is anyone who will read your post who will not relate in some fashion. You have very succinctly outlined difficult issues, some or all faced by each of us. I think the only thing patients and caregivers can do is to be as well-informed as possible. Then, when our individual crises are past, do something positive as Brian has with this site. Offensive? I cannot imagine how anyone who is dealing with the system would find your post anything but an expression of what he/she has thought and experienced.

You and your mother are in my prayers.

Joanna

Hi all, I have to concur with CynthiaS and Joanna based on my own recent experience regarding the surgery/radiation/chemotherapy debate and lack of a multidisciplinary (interdisciplinary?) approach. I had surgery on Sept 16th 2002 - graft placed in right upper palate and 4cm tumor (depending on who you talk to - pathology said 3.4 cm) removed with one affected lymph node. I know it's not a new story to many of you but I certainly felt "buyer beware" initially in that there didn't seem to be a cogent approach aka reatment plan from "the team." I realize research in the head & neck tumor area is dynamic and large scale studies are few and far between - but when the surgeon says, "I reccommend surgery followed by radiation ... but of course I'm a surgeon ... it's up to you - get as many opinions as you want ... and then goes on to quote research numbers at a large local institution dealing with head & neck tumors (non-surgically)as being 'suspect'in terms of cure" ... it does leave you wondering - and I'm in the medical profession. So I did get the opinions of another surgeon, a medical oncologist, and a radiation oncologist. I also read the postings on this web-site and discussed all with my partner Kim (also a medical professional.) No medical professional absolutely asserted their's was the only approach - on the other hand you are left in a no-man's land where information/knowledge truly is power but it takes time to track down and assimilate. Speaking to others having this type of surgery helped, going to a medical library helped, revisiting the "team" with more insightful and probing questions helped clarify or at least narrow down what the approach should be in my own case as did having questions answered on this web-site. So to cut a long story short, I'm now at the end of my 1st week of radiation (standard not IMRT) and know I will not have to have chemo after discussing this at length with the heme-onc doc (don't you love the jargon). I certainly empathize with anyone newly diagnosed and without the support of those around me including Kim whose mantra is "you have to drive your own bus" and she is right. Except where I grew up we drove on the "wrong" side of the road - which may account for why my journey through the healthcare system has been a rocky and at times scary one. Thanks to all who contribute to this site - I'm not one of them but will be doing more from now on depending on how I feel after being blasted each day.

Take care, Dave

Dave,

Glad to see you feel well enough to post. That certainly is a positive sign!

Keep up the good work and remember we are here to help through both the good and not-so-good times.

Cheers

Cynthia