:p Hello and thank you for this site!!!

I am writing here for my cousin. Her husband was diagnosed SCC of the mouth (oropharynx??) after being treated for an earache & infection for the past 8-9 months. I don't know where the primary is but it is located in the tonsil, tongue and 1 lymph node (that we know of so far). They have been to the "Round Table" and was told he was stage IV. I tried to tell them to bring a pencil to write down pertinent info such as TNM Staging but they thought that they would "remember everything" so I don't know what the final outcome is. Anyways, they are going to start with Chemo and he has two options as far as which chemo he can go with (again, they don't remember the names) . The doctors talked about doing surgery to remove the tonsil but decided against it because they feel it is more important to get the chemo started instead of waiting for him to heal from surgery. I know I probably should have all the specifics before I post here (I will be getting them tommorrow) but I just wanted to ask a few general questions regarding docters & insurance. My cousin has a HAP plan. I am very familiar with this plan and know that you do not normally get the best care/doctors. I would like them to get to a major cancer center for a second opinion but from what these drs are saying, I'm wondering if there is time to do so? I should say here that when my brother was diagnosed with Melanoma, the dr at U of M told him that the only treatment option that he had was interferon. Well, I found a board for Melanoma (which I am still a part of) and was told about an alternative tx at Dukes. He went there and has now been cancer free for 7 years and come to find out, the dr that told us about no other tx available, has referred many patient to Dukes for this exact tx. So maybe you can tell that I am a little leery about drs (especially ones in HAP) and 1st opinions. I know that this question has probably been asked here before but is there a general feeling here among everyone as to "who's the best" in this field. Everything I read say's to don't mess around and find the best as far as this type of cancer goes!!! I have a feeling that they will probably get a fight from their insurance co but the have some money (I'm not saying here that money can buy a cure!!!) and would probably be willing to do what it takes and fight the insurance co in the meantime. Sorry for this being so long, I jsut want to make sure that they are doing everything they can before they "jump in". Is it normal to just do Chemo or could this just be palliative care? Thank you so much and is there anybody here in the Detroit area? Just thought that maybe in the future you could speak with him. Thanks again for all your help. Kimmie

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Kimmie

Kimmie,

You are correct in your assumption that chemo alone is not used for curative treatment of SCC. If he has had no surgery or radiation, it doesn't make sense to do only chemo.

Please, please convince them to get a second opinion at a major cancer center. It is true you don't want to delay treatment, but you also don't want to start treatment without having explored all the options. If this is a primary SCC and not a recurrence, he should definitely not do chemo only!!! It sounds like you know from your brother's experience that it is important to get a second opinion and also to do your own research. Please go with your gut instinct on this one.

Rosie

Adding to what Rosie said, many times here the CCC will not take a patient after Tx is started. Time is of the essence.

They should ALWAYS write eveything down! Many critical decisions have to be made practically immediately. People are too emotional to remember half the stuff the doctors say. I might even be tempted to get an inexpensive microcassette recorder at Radio Shack and tape all of it.

Chemo, by itself, would never be a single treatment modality for a primary H&N cancer (at least not at the moment). It has not shown to be effective for treating primary tunors. It is always an adjunctive therapy to radiation and/or surgery.

What is a HAP plan? The CCC's work out deals with insurance companies all of the time.

Hi Kimmie
I have always been told that Chemo is NOT used for curative purposes with SCC. I'm with Rosie, if this is your brothers first diagnosis of SCC then I would expect him to be heading for surgery, radiation, chemo.........some mixture of the three, but not chemo alone.
I know MD Anderson in Texas is considered one of the top facilities.
Wishing you well,
Minnie

Kimmie:
Never heard of Just Chemo alone.....
Darrell

Kimmie, I have also never heard of just chemo alone. Please have your cousin's husband go to a cancer center to get a second opinion. This disease is to aggressive and dangerous to play around with. Generally, you get one chance to kill it and you need to attack it with every possible treatment the first time and hit it as hard as possible to try to avoid any future problems. Will pray for you all.

Kimmie,

Welcome to the neighborhood and your friends are so fortunate to have you trying to help them learn the ropes ahead of their journey. The more knowledge, the better the decisions.

It sounds like a lot of the details have been lost in the translation and the numbness of the first leg of the journey. As much as you want it, your friends may not heed our warnings and may not do much of anything you try to help them do in preparation of the fight of their lives. Unfortunately, that sometimes comes with all of this and even worse, sometimes it is too late to right the ship after it has wrecked. Be prepared to deal with this and do all you can to help anyway.

I have not heard of HAP (Health Assistance Plan??) as an insurance policy but rather a plan that gives discounted rates to a very specific list of providers that have offered to give lower rates with hopes of more patients. I hope this is not the case as it is often nothing less than what you can negotiate yourself with doctors. If this is the case, it would also be impossible to get any different insurance under the circumstances. Maybe you could offer to call the powers to be that administer the HAP for clarification. The cost of my treatment without surgery was easily over $300,000.

I have not heard of using chemo alone, either. I know I started chemo just before radiation and maybe that is the plan. As suggested, though, once you start treatment, you most likely can't get anyone to stop the treatment regimen until it is completed. MD Anderson in Houston has a process of reviewing the case with the managing doctor (ENT or otolaryngologist) or medical team and giving recommendations. This is just to get another set of eyes to review all the diagnostic tests and treatment plan before it starts. I am sure other major comprehensive cancer centers would do the same.

Good luck with your friends and I hope there is time to look at alternatives and not rush into the treatment without knowing what the plan is and what the expectations are.

Ed