My mother has been fighting end stage emphysema for two years now. Last Pulmonologist that saw her stated she was at 20% lung function. She oxygenates well at 3 liters of oxygen at rest. We have been aggressively attempting to keep her co2 counts in check.

We have also been combating huge anxiety attacks. She was uncontrollable until about 4 months ago the miracle drug was found (Risperdal).

About 2 1/2 months ago, an infection developed on her jaw. I never saw anything like that in my life and called the Dr. My mother has a visiting physican who came out to the house and perscribed Cipro - which didn't work - then Clindemyacin - which also didn't work. In fact it got worse.

She was then admitted to the hospital for a cat scan and IV antibiotics. After a couple of weeks in the hospital, she was transferred to an acute care center for further antibiotic treatment. She has now been there about 2 weeks.

I recently asked the staff doctor why the size of her jaw has not decreased while the oozing puss seems to have gone away. He then sent for a consult with an Ears Nose and Throat specialist. The Ears Nose and Throat specialist states under no uncertain terms that it is cancer. He says that its a large tumour which has almost destroyed her entire jaw and it is inoperable. He then took a biopsy, which we are not waiting for results..but he still states it is certainly cancer.

He states I should take her to the U of M cancer research center. My mother has been through so much and is so weak. Over the past 6 months alone she has been in the hospital for long stays. She has been probed and xrayed and just ran through the mill.

My question...

I know my mother could not endure surgery and chemo treatments in her current condition. In fact I was told if she had to be put on a breathing tube for anesthesia..she'd probably never come off.

I don't want to immediately think "hospice"...but, I don't want to torture my mother any further either. I'd prefer to take my mothers medical to cancer specialists and get their opinion before they start in on her. Will Dr's work like that??? Is that a smart route?? Any guidance here will be appreciated.

Hi J:

I am so sorry to hear that your mother is having such a difficult time on so many fronts.

The issue of the tumor in the jaw is a critical one and needs to be weighed against her ability to withstand the effects of anesthesia and her funtional lung capacity and prognosis on the COPD front.

Given your mom's incapacitated state at present, it would seem very reasonable for you to obtain her permission(by written power of attorney if needed) and bring copies of her CT scan and biopsy results to the nearest and best qualified head & neck cancer specialist you can find in your area. It would also be helpful to ask the MD's currently diagnosing her to offer their opinion about staging and prognosis too. Then, cross check that against anyone else you ask at different locations for consistency.

Other thoughts: it seems you may benefit from more information to help make treatment decisions. Has your mom had a brain, lung, abdominal and/or bone scan to rule out cancer in any other location where oral cancer usually travels in an advanced stage? If not,you may want to ask for the above to help clarify what you are dealing with(all are non-invasive, non painful tests but can cause anxiety attacks which may be an issue).

In addition to speaking with a head and neck surgeon (ask how many cases like your mom's does he/she deal with on a yearly basis?), I would also ask to speak with a radiation oncologist (can radiation help shrink her tumor?) and a hematology oncologist (can she get any benefit from curative OR palliative chemotherapy?).

Please keep us all posted-your mom will be in my thoughts,

Kim

J-

One other question: you said your mom initially had an admission CT scan to evaluate the jaw infection. I am unclear from your message if the MD saw the tumor then or not? If I read correctly, it seems you did not have a discussion about cancer until you questioned the continued jaw swelling a couple of weeks later. I am puzzled about why the tumor was not mentioned to you sooner if it is that large and probably was easily visualized on the first CT if it is invading her jaw?

Sorry, the cynical health care provider side of me wondering if there was information available that was not shared with you? It's a valid question to ask...

Kim

Yes a cat scan was done upon admission. I was told that they saw a mass which could be either cancer or osteomyelitis. I was speaking with an oral surgeon, who said he had seen many scans and this didn't look like cancer to him. He said that they should do a biopsy, but that they would have to put her "under" for that and then she may never come off of the ventilator.

The wound specialist who was the admitting physician, didn't even mention cancer and just said that she should go on IV antibiotics for 6 weeks.

Amazingly, though, a biopsy was possible "locally" at the acute care center. I'm not sure why the other hospital didn't think of that.

It would seem reasonable to let the initial oral surgeon who treated your mother know about her diagnosis. This is yet another of the many examples we have all heard validating that a trained eye and scrupulous exploration is key to diagnosis. The first CT scan could also be obtained and brought along with the second to the specialist to see if there are any changes in tumor size (although that is fairly unlikely in a short time).

The biopsy issue is very troublesome and I would raise questions about why one was not done at the first location. It seems potentially remiss to have a suspicious CT scan but still prescribe 6 weeks of antibiotics-time is a critical factor with lesions in any stage of development.

I hope you have better support now. By the way, are you comfortable with the ENt working with your mom?

Kim

Hi,I had a good portion of my jaw removed because of a tumor. This type of cancer is 10% of all Oral Cancers. So unless you are a lifetime tobacco chewer from Kentuckey they tend to not believe thats what it could be.Get the results of the tests before you say cancer. IF it is cancer the growth is not a suprise, this happened to me ,grew rapidly in a short time, upward into my mouth. My surgery took 14 hours, and later I had to have more. There is no way your Mom could stand this.The treatment here seems to be drugs.No matter what it is , I guess the treatment has to be drugs. I feel sorry for your Mom, to already have health problems, then this.The last time I was in recovery after in-out surgery the was a young woman trying to help her Mother who had just had minor surgery that was having an anxiety attack, Mom brought the roof down. So you have had your hands full , haven't you?Do what is best for your Mom that will help her health but also make her the most comfortable, if you have brothers or sisters, or Aunts and Uncles set down and talk this over with them. It will at least help you.Good Luck and let us know what happens. gnelson

I've been pretty busy, so I haven't had a chance to answer any of the posts here. Thanks all for your input. The first biopsy was inconclusive, so they did a second and yes, it is cancer. Squamous cell to be more specific. It seems to radiate from the floor of her mouth, throughout her jaw and almost to her neck. Additional CT scans seem to indicate that it is not anywhere else.

We have two appointments set. One at a local hospital's cancer center and another at U of M. Her ENT seems to be a bit surgery happy, while her md seems to believe that is out of the question. He believes she'll spend her last days on a breathing machine without a jaw, if we went the surgery route.

We'll see what the experts have to say. I'm horrified at this whole thing and my mental filing cabinet is quite a mess now. I was just getting a handle on how to deal with my Mom's COPD. I had her diet and treatments down pat and was really getting a feel for what she needed. This, though, is way beyond my capabilities. We'll just take one day at a time.