Back in March, 2006 my mother was diagnosed with oral cancer T4. The tumors are located in multiple places including;

- Roof of her mouth
- Right jaw bone (at the jaw joint)
- Two masses on her left lung (assumed tumors)
- Right side of neck

My mother, who is now 71, chose to do nothing.

This decision was based on choosing quality of life versus extending her life. She continues to live alone in her apartment (my dad passed away several years ago) . She still drives to the local food store and church 3 or 4 times a week.

Its been 9 months and counting... Since she refused even a biopsy procedure, we aren't positive what type of cancer cell she has.

Her symptoms have gotten progressively worse. At this point, she has increasing pain in her right ear, cannot chew food with much success because her right jaw hurts. In addition, when she drinks fluids, some of the fluid comes out her nose when she attempts to swallow.

Her weight is starting to drop... Prior to the cancer, she was 97 pounds (height is 4' 10").

She is now down to 88 pounds.

Is there anyone out here that knows someone who went down this same path? Most of the patients the visiting nurse sees have chosen to go for treatments. My mom is not sure what is coming next... The end is certainly much closer than the beginning (9 months ago).

Any suggestions/warnings are certainly welcome.

Thanks,
Paul

I forgot to mention my mom is taking motrin only. The visiting nurse is trying to talk her into taking a stronger pain meds...

My mom claims the visiting nurse, her family doctor and daughter (who is also a doctor) are just a bunch of drug pushers...

She is refusing to take the prescription pain meds because it will stop her from driving....

I would highly recommend that you get hooked up with the local hospice people. This is certainly going to degenerate to a point where her resistance to pain meds is going to go away. Driving is something that you should monitor carefully since she may endanger herself and others as this disease further impares her abilities. The onset of those impairments may occur suddenly, and given her desire to go to church so frequently, she may be driven to take herself there even with compromised abiities to do so. But the hospice people can prepare you for all the events that are going to transpire and have the entire family prepared for what is going to be needed and what to expect.

If she is not eating and dropping weight rapidly, various medical conditions could actually accelerate her death before the cancer. This may or may not be her desire. I suggest that you email Gary on this board who has been through training in much of this including hospice care, and who will be a source of information for you beyond what most of us here can offer. We have few posters that choose to let the disease run its course.

Hi Paul,
I work in hospice so I have seen many people make the same choice that your mom has in refusing treatment. It sounds like she has been active, driving, getting out, going to her church, and doing the things that are important to her over the last 9 months. That's the good news, she's had a relatively good quality of life during this.

However, it's not an all or nothing situation. Most of our patients who have refused treatment for the cancer, still accept treatment to control pain and other symptoms. Is there anyone she would talk to about why she is putting those 2 separate issues together?

Some drugs will prevent her from driving and some won't, it's a matter of finding the right dose and the right medication for her. She's very tiny so that needs to be considered in those decisions. There is prescription strength aleve (naproxen) that comes in liquid form if that's easier for her to swallow and it's stronger than the over the counter motrin. Has she had a bad experience with pain medication in the past? What is she really afraid of?

It's not unusual for parents to not want to discuss things with their adult children even when one is a doctor. Apparently we never grow up. I have the same issue with my 83 year old mother who tells me all her symptoms but never accepts any of my suggestions to resolve them.

Would she talk to a chaplain, her minister or a social worker about her feelings? Who does she trust at this point? I think you need to find out what your mom thinks is going to happen at this point and go from there. Does she understand that the cancer is progressing?

Family conferences can also be useful - with a neutral objective person to facilitate - to come to a resolution. She has the right to refuse any and all treatment, but the flip side of that is that pain will increase, her ability to eat will deteriorate, and those are quality of life issues too. Also she has a family who obviously love her and your feelings need to be expressed and considered. Have you told her how hard it is to watch her be in pain when she could take medication to alleviate that?

As for the driving, that's the hardest thing for independent people to give up. The issue there is not only her own safety if she is driving with the distraction of pain but everyone else on the road. Are there people who are able and willing to drive her to the places she wants to go? Does she live near near all of you?

Many people express their fears through pat answers like everyone is a drug pusher. She knows they aren't but it sounds good and shuts down the conversation. Is she on a hospice program? There are several good programs in the Philadelphia area that I'll be happy to tell you about in a private email.

I'm sorry that you are all going through this and let us know how she is doing.
Regards JoAnne

Dear Paul,

My dear Aunt Rosemary chose to do nothing after finding out that she was suffering from a recurrence of her cancer. That was back at the end of July. The one thing I can tell you for sure is that her condition may change drastically from one day to the next at some point and for that reason, I strongly suggest that you take Brian's advice and contact a hospice service immediately. My Aunt was surviving pain-wise on Vicodin for a long time. She was visiting our Grandmother, was out in her tremendous football field of a yard with her dogs, and then one day, the pain became overwhelming, extreme nausea and gagging prevented her from holding anything down- even her liquid nutrition, and it has been downhill all the way since then. Please be prepared! Despite their faith, their inner strength and their will- things will definitely change with no treatment. She will need pain meds, she will need help to do everything and eventually she will need to be monitored. Contact Gary privately for an understanding of what is to be expected. He can give you a lot of resource reading material that will help you to understand her journey.

The hardest part for us is understanding, living with and respecting this choice. I will pray for your strength and your ability to continue to love her even though you may disagree with her. Believe me, sometimes it gets hard, really hard.

May God be with you, your Mom and your family.

Hugs,
Lisa

Brian,

Kudos to you my friend for starting this wonderful site. I have read dozens of posts.


Joanne,

Thank you for your lengthy email response. I have read it several times and am still amazed that a total stranger would spend so much time and effort to help me out...


Eileen (co-worker and cancer free survivor),

Thank you for letting me know about this board. I appreciate your input and strong conviction.

Lisa,

Thank you for your input... Hug right back at ya!!!


Friends,

My mom is taking Vicodin every 4 to 5 hours in addition to a mouthwash/spray solution that numbs her mouth and throat. She is still sleeping through the night.

She does have a visiting nurse and hospice health care giver coming one day per week. I forgot to mention that in my original post. These visits have been occurring since she was diagnosed back in March. Just last week, the visiting nurse had to replace the "death pack" in the fridge as my mother refers to it because the expire date had passed. She jokes that she outlasted the "death pack"...

We had her over the house on Tuesday for the holiday steak cookout (family tradition since 1966). She was smiling all night as she watched her nine grand kids open up their gifts. Despite knowing that this would mostly likely be her last christmas, she seemed content and thrilled throughout the party.

In addition, she had the added pleasure of having all five of her kids together for christmas. (Last time was 1996). The reasons behind that 10 year gap would qualify me for another type of message board (;-).

I will keep you posted on her progress.

Thanks again,
Paul

Paul,

Thank you for keeping us posted. I am so sorry to hear of your Mothers choice.

I am praying for her and all five of you. This is so very hard for your family. I am so glad you were all able to be together this year for Christmas.

take care,
Diane

Hi Paul,

What a great Christmas present for your Mom and your family - the gift of being together. I am also one of 5 siblings in a delightfully dysfunctional family and I suspect there's lots of stories we could all share. We usually get 4 of us but then there's that other one...

I'll bet she loved outliving the "death pack" in the fridge - way to go! She's got spirit your Mom. It also shows the hospice staff is paying attention to the small details so that's a good thing. As her condition changes, there are people that are monitoring her and that increases the likelihood that things will get dealt with as they develop. Take it one day at a time and enjoy those good ones.

Happy New Year,
Regards JoAnne

Hello everyone...

I figured that I would give you an update on my mom's condition. Its been almost 11 months since she was diagnosed.

The visiting nurse came on Thursday and contacted my sister (the doctor). She told my sister that mom's pain has increased enough that she is recommending she take two vicodins (5 mg) every 4 hours. Then, in between, she should take the Motrin. The nurse also told my sister that she believes that the time for 24X7 care is rapidly approaching.

On Friday, I took the day off and spent it with her. We talked extensively about her current condition.

The tumors have grown in size as follows:

The tumor near her right ear is pushing her ear out away from the side of her head. This same tumor is pushing its way down the side of her face (just in front of her ear).

A second tumor (or just a tentacle of the ear tumor) is pushing its way down from just under her right eye down to the side of her mouth.

Yet another tumor (or tentacle) is firmly attached to her right jaw hinge and is significantly impeding her ability to chew.

Her food intake is now 100% soft foods and soups. Although, she still is able to eat her Bassetts Vanilla butterscotch ice cream!!!

To recap the current impact of the cancer:

1) Ear pain
2) Difficulty chewing
3) Wakes up every morning with slobber on her pillow case.
4) Complains that she hears an echo when she ever she talks.

I will keep you posted.

Paul

Well, she may just take the prize for the toughest 71 yr. female old I ever heard about. HOpe you inherited a good share of her genes. While I know this is truly hard on you, Hopefully you can figure out a way to honor her wishes to be at home for as long as possible and keep her pain free at the same time. When John's recurrance presented, there were 2 things his Doc told me [that I did not want to hear at the time, but now appreciate being forewarned about] #1. Dying from Head and neck cancer is NOT a pretty sight. #2. Pain management becomes all important [for the patient's sake and the family's] and there needs to be good communication among everyone involved. Sending prayers to your family. Amy in the Ozarks