I had read a lot of your stories and posts, and hope that I am not breaking any unspoken rules here, but my knowledge of mouth cancer is pretty new. Not going to go into a lot of detail, but my siblings and I have had little to no contact with my Mom over the last 5-10 years due to her alcoholism.

Last week, one of my brothers got a call from a "friend" of Mom's, saying that Mom was very sick and that she needed to make some difficult decisions. She has cancer of the mouth and it is bad. My other brother went to an appointment with her yesterday, and got as much information as he could. He did not know a lot of the questions to ask -- he got the call from Mom an hour before the appointment, asking him to come with her. I will relay the information as it was given toi me. There are three options. First is a surgery to remove all of her tongue, her lymph nodes and part of her throat. They would take muscle/tissue from her chest to reconstruct part of her throat, although she would never be able to talk again, would be fed through a stomach tube and would have a tracheatomy to put a permanent tube in. 13-14 hour surgery. This would be followed by chemotherapy. This has 10-15% of chance of actually curing her. Second is chemo. only, but this unlikely to cure anything and would only possibly shrink the size of the tumor in her tongue -- my brother said her tongue is huge and that you can barely understand her. It is likely that eventually the belly and throat ube would still be needed as her tongue grew and started to block her airway. The third is do nothing with the likelihood of the tubes being needed much sooner. Any type of surgery is conditional upon her stopping the drinking and gaining weight. I guess that she is also seeing another doctor, because in my brother's words, she looks very malnourished -- rail thin arms and very bloated belly -- effects from the drinking damage, but he did not know exactly what they were dealing with there. She can't eat anything solid right now, so the doctor wants her to drink 8 ensures a day to gain weight. I know nothing more at this point. My brother did not know to ask if the cancer had metastized, and what her life expectancy was under any of these circumstances. Even if they were able to cure her of the cancer, it sounds like there are some other major issues also, and of course, proceeding forward is contingent upon the drinking stopping which hasn't happened yet. We are in the U.S. and my siblings and she all live on the opposite coast from me. Despite our non-relationship with her, she is looking for guidance/for us to make the decision for her. My siblings are meeting with her on Wednesday to talk about this, and we are trying to learn as much as we can before that meeting.

Before coming to this site, we/I wasn't sure how much her life could return to any sense of normalcy with the surgery, and were to say quite the least, not sure how to steer her. I am still reading through the stories on here, but given your experiences, how many have had all of their tongue removed, and how would you council her given your knowledge? She is 60 years, has been an alcoholic for 30+ years and a smoker for all of my life, so at least 40. Please, I do want to hear what you would do given your knowledge.

Sondra

Dear Sondra
So sorry to hear of the terrible circunstances concering your mom. As you are well aware, most of us on here have had cancer or are still dealing with it...me included. Its not an easy thing to cope with and needs an enourmous amount of inner strength to deal with the discomfort and the treatment involved. Seems as though your mom really is facing a touch and go situation here. Her symptoms seem to be quite far advanced from what you have said. were there no early warnings of this or did your mom brush off any alterations in her mouth/throat as nothing serious?
This is going to be some test of willpower for your mom because first things first....she needs to give up cigarettes and booze...but these lifetime habits are hard to break. The irony here is that the damage is already done but it will help with her future survival if she wants to fight cancer. It may well be.... that at 60 years of age she may not have the will to carry this through as the surgery and treatment she requires could be overwhelmingly tough. With so many changes to adapt to it may all prove too much.
One of the people you should talk to on here is Vicki Lynn as she has had tongue removal and tube feeds regular. She remains one of the most optomistic people i know despite her hardships.
As for the rest of us....well we have all experienced Cancer to varying degrees, though perhaps not as radical as the prospects facing your mom.
All of us in here are willing to offer our support in whatever way possible, wether its practical tips on medication, a shoulder to cry on, or advice on what meds, creams or gels to use to help with the after effects of cancer treatment.
you'll get more replies to your post over the coming week and our resident Doc, Vinod, will no doubt raise some issues with regards to this.
I sincerely wish you all the best in sorting out the best way forward for your mom and perhaps now will be the time to try to put the past behind you all with regards to her drinking etc as she is going to feel very lonely indeed as she faces the prospect of radical surgery and radiotherapy and chemo treatment.
Keep us posted and remember that you will always be made to feel welcome here.