My mum has just been diagnosed with T3 stage lung cancer and was given only the option of intensive radiotherapy for 12 days, 3 times a day. Upon hearing the side effects and success rate, she has opted out of treatment.

I live a long way away from her (I'm in Hong Kong, she's in Scotland) but I was there last week when she met with the oncologist so I know what was discussed.

My mum decided against treatment later that day, so I have not been able to ask about what to expect if she doesn't have any follow up. My dad died of oral cancer a year ago and she was his primary caregiver for the last two years of his life (terrible times for him) and doesn't want to see herself in that position.

Can anyone tell me what we should now expect with regard to how she may deteriorate? Already one vocal chord is paralysed and she's having trouble eating - constant choking. She is, sadly still a heavy smoker. She lives alone but has a sister about an hour away.

I just don't know what to do to help. Has anyone been through anything similar?

Thank you everyone.

Fiona

I am so sorry to hear of your mom's diagnosis of cancer...always so sad to hear someone else has been sticken with this dreadful disease. I wish I could offer you some ideas of what to expect, but cannot. My husband has SCLC and is hanging on right now and taking chemo, but not radiation. I can respect your mom's wishes but I know it must be hard for you too since you are so far away. Is there a way you can call her doctor, would they be willing to share any information with you over the phone?
My thoughts and prayers being sent your way,
Kim

Fiona, my heart goes out to you. My mom was diagnosed with stage 4 lung cancer and she too was a heavy smoker. Ironically, she quit 2 weeks before diagnosis. It is hard to say exactly what to expect, so much depends on her eating habits, exercise habits, and of course her emotional state. My mother was given 6 months if she took the radiation. She decided the doc had to be wrong, there was too much going on with her kids to not be around....lol. Sometimes denial is a nice place to live. It was necessary to make sure someone was with her at most times due to the anxiety and pain meds making her unaware (ie cooking, driving). As the disease progressed, she went on oxygen fairly soon and had to rely on her husband and friends during the week for meals, travel, shopping and me on the weekends (I lived 2 hours away). A big factor that helped her was her pastor. She had left the church (long story), but reached out when this was diagnosed. I think the rejuvenation of her spirituality helped her a lot. She had to go to the hospital on several occassions to have her lungs drained of fluid. Each time she ended up in ICU for several days b/c they don't heal like a healthy person would. Mom lasted for 16 months after diagnosis from sheer determination. She wanted to see me safely divorced, my brother graduate from med school and my sister married. I know it is devastating to be so far away, but I kept the email and IM's flowing daily as well as calls and cards. We were able to share a lot in writing that we could not in person or on the phone. Sometimes we are grieving so terribly for them and ourselves that we cannot verbalize all we want them to know. She became an email junkie and it kept her in touch with people when she could not talk for long periods of time due to decreased breathing/lung function. I will pray for you both, it is so hard to lose a parent, but there is still so much you can learn from her during this process of dying. I would try to open up a dialogue with her doctor if she allows (mine did), and was able to get her reports via fax. I hope this helps some, or at least gives good suggestions.
~Mim :wave:

Kim & Mim....thank you so very much for taking the time to post and share.

It's very hard being so far away, all her children are scattered around the globe...I'm in Hong Kong, my sister is in the Canary Islands and my brother is in South Africa but we are all planning to visit as often as possible. I want us to all be together with her at least once, as that has unfortunately not been possible in the past.

Sadly her chest function has already deteriorated quite markedly, and she is unable to walk far without having to stop because of breathlessness and she has a really awful cough. I worry about her desire to go on, particularly as she witnessed my dad's deterioration and his struggles with choices.

I do want to have some direct communication with her doctor and thankfully her GP is much more caring than the consultant she would have used for the treatment. Thank you for the suggestion about emailing/faxing reports, that is something I shall definitely follow up on and I shall certainly attempt to secure the direct assistance of the doctor, with my mother's approval which I'm sure she'll give.

My mother refuses to be involved in any way with what she calls the 'evil interweb' (chuckles), I think she's read too much about predators in chatrooms!! Calls and visits will continue as much as possible.

Thank you again for your help, it is much appreciated and my heart goes out to you both for your struggle and losses.

Fiona,
Sounds like you could have some good communication with her GP which is great. My dad was recently diagnosed with bladder cancer and lives in Vegas and I live in California. I was torn between my husband who has lung cancer and my dad. I did get a quick trip over to say my final goodbyes to him. I completely understand what you are going thru. I do have a brother who lives in Vegas but he is more of a burden to my mom than help! It tore me apart to be nice to him infront of my dad while I visited but I had no choice...wanted dad to be happy. I am sure it would be very special for your mom to see all of her children together. Did you mention what type of lung cancer your mom has? Small cell or non small? I do know with any type of lung cancer that it has a way of taking over the body very quickly so I would not be making plans for a trip a couple of months from now...not to scare you but if you want to visit you want your mom to enjoy her visit with all of you. I know you must be so torn and feel so helpless...just let her know how you feel and never let anything you have ever wanted to share with her go unsaid. Hang in there and whenever you need to chat just check with us here....not an easy thing to go thru.
Kim

Thank you Mim for your words...they mean a lot to me.

I'm not sure about the type, the consultant was not forthcoming and I'd not read enough about it to ask that question.....but i'm hoping that when my mum goes back to the GP, she'll be more willing to communicate all information so that I can research some more

I can't imagine having to make the choices you were forced to Mim....dealing with this and having dealt with my dad is bad enough, but to have two things togther would have been so incredibly hard

Again, thank you for taking the time to post.

Fiona

ach..KIM i meant KIM in my last post....gosh i'm soooo sorry :o

Thank you Kim for all your kind thoughts and suggestions.