My dad is on his last leg with his treatment. he's sufferung horribly and he wants to quit. they wanted him to complete 30 treatments and he's only finished 15. he's 77 years old and has lost 20 pounds so he's down to 135. will the 15 treatments do any good or do you have to finish all? thanks for any advice.
tracy

My oncocologist told me that people who don't complete treatment have a very poor survival rate.

I know it's tough - I got down to 106 lbs. I could actually wear my wife's size 0 pants. I lost over 60 lbs. He shouldn't be "suffering horribly" - either he is not being up front with the docs about his pain levels or they are not managing it well or undermedicating him. Pain management is a basic patient right - demand it.

Gulia, While I agree with Gary's statement about pain control, I have to say that at age 77, your Dad has earned the right to say "ENOUGH is ENOUGH". He is suffering now, and it will probably be a long time, if ever, before he is pain free. At his age, he should get to choose what quality of life means to him - and his family will need to respect that decision, tough as it may be. I don't mean to be insensitive, but sometimes we have to let our loved ones make the call. [I am speaking from experience with my Mom] It is tough. Amy

why is the prognosis so poor if only half a treatment? without radiation they told us that he has a 30% chance of a reoccurance with 30 radiation treatments they said he has a 5% chance. If only 15 treatments are his chances now 20%? the radiologist said that if he quits now he may as well have not done it at all. we are very distraught over this and my dad is beyond his pain tollerance. the pain meds have been weak up til now but they wrote him a new one today. he's just so ready to be done and to be able to live a little. his mental state is very low and his physical is even lower. it almost seems not worth it but maybe a year from now we would think different if he's doing well or maybe a year from now we will regret not finishing if it returns again. how bad can this really get?

Amy,
we can agree to disagree. My father lived to 92 and went though some horrific things at a much older age and fought live hell to live. I am mentored by a guy who is 80 and he hates to be on any drugs. He has a daughter who is a nurse and between her and I, we have to convince him of the benefits of the drugs he takes. Many older people are suspicious of drugs or think that narcotics are bad or addictive, so they undermedicate. Some are put off by the side effects of the narcotics and don't like feeling "loopy". Those effects typically go away after a tolerance of the med is built up, in usually a week or so. We have seen this many times here.

I reiterate, his pain meds are inadequate. Response to treament is a very dynamic thing. I researched it before I even started treatment and had all of my meds lined before I needed them. My doctors gave me anything I wanted. Pain has to be managed like any another side effect of treatment. Use a 0-10 scale when speaking with the doctors (usually the MO manages the presciptions). The document in the link I refered you to below will explain how to grade pain and present that number to his doctors. 7-10 being unbearable pain. He probably needs meds for anxiety and/or depression as well.

I would guess that he is on Vicodin or Percocets or some other medium strength pain reliever and that just won't cut it at this stage.

What exactly are they giving your father for pain?

Most of us suffered by the midpoint of treatment. Radiation may SEEM easier than surgery but I can assure it's not. It was the hardest thing I have ever done.

I was only given a 38% chance of 5 year survival (or put another way, a 62% chance of dying within 5 years). Well I guess I have 1 1/2 years to go!?!? There's a chance he will be in the 30% survivors and that what's I'm betting on as well. Actually, if I read this right, you stated that he has a "30% chance of a recurrence" - that means a 70% chance of no recurrence - that's well worth the pain & suffering (I am confused by the way you present his numbers). But it should not be horrific suffering in any case. Are you his advocate or caregiver? Does he have live in help? You are wise to get on top of this now.

Your RO is being honest with you - they either give the full dose or none at all. I have yet to hear of anyone who got 1/2 treatment and survived. "How bad can this really get?" It can get really bad. Oral cancer in itself won't kill you directly (or the tumor could grow so large that it chokes you to death - which is what mine ALMOST did - I had a tumor in my throat that was bigger than a golf ball and a little smaller than a tennis ball). Typically though, it has to metasticize to a major organ for that to happen. I work with persons in the terminal phase and believe me, you don't even want to go there - especially if there is a good chance that they can cure him.

You are in California, where is he being treated?

Here's a link to the NCCN pain mamagement guidelines: http://www.nccn.org/professionals/physician_gls/PDF/pain.pdf

I have to agree with Gary, it appears that your dad's pain management is inadequate -- it IS a basic patient right so you need to be a firm advocate for your Dad. My husband didn't get on too well with the oral opiates (e.g., oxycodone) but the Duragesic patch worked well. However it did take (as Gary noted) a few days to adjust to this medication. He used oxycodone for break-through pain or before eating.

When and what kind of pain does your Dad have? That is, is it constant or mainly when he tries to swallow or eat? What pain medication, numbing rinses etc. has he been given? Have you met with a pain management specialist?

Is he on a gastric tube (PEG)? He has already lost more weight than the threshhold at many cancer centers for PEG insertion -- which is usually 7-10% of pre-treatment weight. If he is having a lot of pain swallowing this will greatly alleviate this problem.

However I do have to agree with several posters that it IS your Dad's life -- another basic patient right is the right to refuse any treatment. However if he does this it should be with a clear understanding of the long-term consequences. Maybe one approach would be to correct the pain medication inadequacy and focus on competent managment of other side effects and see where this leads -- ask your Dad to try this and make a decision only after every option is explored.

I went to a head and neck cancer conference last month and the pain management specialist from Hopkins was very blunt about the failure of many doctors to appropriately manage cancer pain, often for fear of legal ramifications. Needless to say he didn't have anything good to say about this as these doctors have failed their patients.

As to prognosis with only partial treatment, I only know of one person who stopped (after 24 radiation doses) and the doctors are not too hopeful about her outcome but she was having major co-mordibity issues and had to stop.

As to overall prognosis, the statistics vary but a lot depends on where the cancer is, its stage, whether the patient was a smoker or not, as well as treatment (e.g. radiation only or combined chemoradiation). You haven't provided that information on your Dad (or at least not in the above post).

Gail

I'm guessing your Dad had a stage II cancer? With a 30% chance of recurrence without radiation that would fit from what I was told. But only 5% with radiation actually sounds pretty low.

Anyway, the deal with radiation is that it's the cumulative effect of it that kills the cancer cells so doing it halfway doesn't get you half the benefits of doing it all the way. It's basically not much better than having not done it at all. I think if there's any way you can, you should encourage your Dad to stick out the treatment. He'll probably be glad he did after it's over and although he is getting up there in years, a death from this form of cancer is still not the way I'd prefer to go.

I agree with Gary that you should get his pain and nutrition under control, anyway before letting him give up. Like Gary, I tend to want to be sure elderly people don't give up too quickly although ultimately it is his right to choose to quit. My grandfather lived through a heart valve replacement (open heart surgery where they cool you down and stop your heart for a while) at age 82 and it kept him going until age 98--and they were 16 good years for him.

Nelie

Gulia, the way radiation works is not linear. Half the treatments does not translate to half the statistical gain. Radiation works (in layman's terms) by killing off tissue at a rate faster than the cancer can grow but slower than the normal tissue suffers permanent damage. This means that if you stop in the middle the cancer might actually have a new advantage (hypothetical)

I would urge him to muster the energy to continue with treatments. He can do it with help.

My dad is continueing with his treatment. they gave him a new pain medication which he took this morning and said he found some relief. pretizone? not sure if that's correct. also new ointment for his face and a new mouth rinse. also he is getting an injection before every treatment to help him with the side effects.his main issues are mouth sores, exhaustion, no appetite and noe depression. we are taking it one day at a time. he is not on a feeding tube yet but we discussed it and he is willing to do it. he lives in his own home ( by choice)5 minutes from me. I am a single mom with 3 children trying to be his caregiver but I feel like i'm not doing very well. One day at a time. thanks everybody.
Tracy

I was in the same shape as your dad although he does have 30+ years on me. I wanted to quit & was "coached" through & continued till the end. It is the hardest thing I have ever done in my whole life! I resisted taking my pain meds & was a real rebel all the way through! Everybody goes through differently. As long as he finishes. The chances are better statistically if he completes the rad. Tell him I said it can be done, it just sucks for a while. Erik