I would really appreciate it if anyone can give me advise or share their thoughts on how to handle a situation. A quick recap- My father was diagnosed with stage 4 Synovial Sarcome in October 2011 he just turned 62 on thanksgiving day. The tumor started on his left thigh near the growing area and has spread to his lymph nodes and lungs.
My father's biggest fear has always been cancer. He refused to go to any doctor for many years because he had a fear of cancer. He saw his mother die from it and two siblings. Him and I have always been aware of our mortality and have had many conversations about it. He always told me that if he was ever diagnosed with cancer that he did not want to get treatment. Well his worse fear became a reality. He has made me his power of attorney because he knows I will respect his wishes and will not allow anyone else to do any different. As with most people that are diagnosed with this it all hapend so fast and thankfully he agreed to chemo and treatment.
He is suffering a great deal. His left leg has had an opening that won't heal since December of 2010. It needs to be cleaned out 4 to 5 times a day and he just started walking on it 2 weeks ago for the first time. The chemo is helping but as you all know it's also taking it's toll. There is always something else that is wrong and there are many emergency room visits. Right now he has broken into hives and is feeling the effects of the chemo. He agreed to the chemo because he believed there was a chance because we constantly tell him there is. We tell him that God is great and is the only one that can decided. And here is where I need some advise.
The doctor just informed my mother that there is no way he can beat this. He said the AVERAGE is two years but it could be 6 months or it could be 5 years. My father does not know this. He is so scared and when there are bad news he shuts down and refuses to make decision and says I have to make the decisions. He has a dr. appt on the 19th of this month, this is the appointment before he starts the next round of chemo. I have thought about having the doctor tell him his prognosis but I don't know if it's the right thing to do. A part of me feels that we should tell him and he should know but I am scared it will completely crush him. I know that he knows he is dying, he tells me he won't get out of this one but I know he has hope. I don't know if it will cruel to tell him but I think he should have the right to choose if he wants to continue the chemo and it needs to be his choice not mine.
Any advise, thoughts, comments or guidance would be greatly appreciate it. I feel so alone, confused and heartbroken.
If he stops chemo will his quality of life improve significantly? It sounds like the chemo is helping with his leg pain? I am not sure how useful is a prognosis for decision making. It doesn't really predict the future and doesn't tell about quality of life. Clearly, the oncologist doesn't think he can offer an option that could lead to a cure. And it sounds like if given the option, your father would choose quality of life over length of life. What about asking the oncologist about what he can offer to make your dad's quality of life the best possible? It may be that a treatment is still better than no treatment for pain and stress control...
You are right. I think they would just offer pain medication such as morphine which he is already on. Chemo is helping his leg and I am not sure what his quality of life would be without the chemo because of his open leg wound, this is something that I will have to ask his doctor. I think ultimately it should be his decision and he needs to know all the facts for as painful as it might be for him and us. I have talked with friends and family about this and some other wonderful people on this site have advise me to do the same and at this point I think it's the right thing to do. Thank you for your reply it has made realize there are more questions we need to ask and more thing that we need to address.
There is always hope and a chance that your Dad will recover from this. Your Doctor saying there is no way that he can beat this is just wrong. It may be that they can’t offer him curable medical options, but there are many examples of people recovering after medical professionals have given up hope. The chance of full recovery may be slim but it’s still real.
I have found this UK site very good and here is a good section on dealing with advanced cancer,
With prognosis I really needed to know and used the information to feed into life and medical decisions. Others are less comfortable about dealing with prognosis, I suggest if you are going to raise that you do it prior to this meeting rather than leaving to Doctor. You know your Dad best and need to consider if information is beneficial. From what you’ve said you seem to be leaning towards that he should know and I agree with this. I think you can raise this with him sensitively at the right time and just ask him if he would like to discuss it. If I was your Dads I would want to know and it would be pretty cool if my daughter was helping me with facing my worst fears. You could start by establishing what the fears are, e.g. Process of dying, death itself? Once you overcome your fear of death it helps with your fight for and enjoyment of life.
Prayer is fantastic, not only for helping you with healing but also just coping with the current situation. Faith gives you hope for the future in Life and death.
My heart goes out to you and your family. Don't let him do any more chemo or radiation it doesn't work. For the healing of the wound I recommend a hyperbaric chamber. This helped my son's wound to heal. The only chace to help him is to bring him to the Gerson clinic in San Diego if he can travel. They will build him back up with all organics and he might be able to come back. I would definitely tell him the truth always. If he doesn't make it like my son. God is great! and he will be in heaven with the angels out of suffering. I am a Christian and believe that we have nothing to worry about if we have faith. God Bless you, give you wisdom and comfort you.
My husband had synovial sarcoma, he passed away May 8, 2011. This after the doctors told him he had maybe 6 months...back in 2007. While your Dad needs to know the statistics, statistics are not God. It is very difficult to maintain hope when you look at stats,Gary is right, there is always hope and a chance your Dad will recover.
Have you looked into the NIH clinical trial by Dr. S Rosenberg ( I think that was his name). It seems promising for synovial sarcoma...
Even if your dad does not beat the disease he may very well beat the statistics...
If your father is a positive thinkIng person then you should tell him his prognosis. He should know anyways but if he dwells on the negative, he will be worse off! He’s an adult, he should know the truth if his faculties are still all there! GOd bless your family during theses tough times!