I hope this isn't too much of a negative post. I don't mean it to be but I am so sad these days..... I have a good friend who is 48 with advanced cervical cancer(diagnosed 4 years ago and treated then with chemo and radiation).. Over a year ago she was having lower back pain but Dr said it was muscle pain and not to worry. Previous scan was clear. We had talked because I was afraid it was the cancer. In August, when she she started having more sever pain in her back, she insisted they do a scan which showed it was cancer near the spine. They did radiation and she was told to do chemo again and it would give her a 60% chance of remission. We went to lunch and she asked me what I thought. I told her I didn't think they were being completely honest with her since it was now in the bone. But she started it in Sept. She couldn't finish the treatments this time, however. It made her so sick and weak and she developed neuropathy in her hands and feet so she stopped the treatments. Home health nurse asked Dr for another scan when she could barely walk into the bathroom. It showed metatasis to her spine, lung and liver. She was sent to nursing home for physical therapy. Soon after she got there, she appeared to be suffering paralysis from the waist down as well as bells palsey. I told her I figured the palsey was more likely from a tumor in her neck since I saw that with my husband.. but the Dr just told her bells palsey until a few weeks later when they found a small tumor in her neck. Sounds all too familiar to me. I have to wonder how common this really is?
In Oct. they put her in a nursing home for rehab to walk. Three weeks later they put her on hospice. I just don't understand why we were eating out, enjoying life, she went for treatments, and then hospice within 3 months and yet a dr says 60% chance or remission. Even I know that was very unlikely. Why can't doctors be more honest about best AND worst case! Let people have some idea what they might be in for and make their own choice with real information.
But there is always that elephant in the room. Sometimes Drs or other patients just don't want to talk about the end even when they know it is close. I wish more Drs could have done that for us rather than continuing with the dreadful drugs that made my husband sooo sick and miserable and never really discussing how short his time was likely to be or how much less he would enjoy his days with some of those treatments. I wish they had told my friend that there was a good chance that it was spreading and that this second round could be more difficult.
I know that when people ask how long do I have...the true answer is no one knows. But the probability is a different answer and I think even my husband would have liked some idea to guide him sooner. I deeply respect those who post here asking difficult questions and while its hard, some have responded directly. I know the drugs are ever changing, but there are also many that are the same. My first prayers for each of you are that you be the lucky ones to beat this disease and my last prayer every night is that one day there truly is a cure but until then, may you all have the best treatments possible.
Charlean
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Charlean
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Charlean, please don't apologize for having an entry that is sad; we are all dealing with sadness here, and it's only healthy to get it out into the open and deal with it.
Yes, some doctors are cold and unfeeling, and yet others are so wonderful and compassionate. But there are no easy answers for anything regarding our cancers.
I sometimes become ashamed of myself when I fall into the self-pity, but it's only temporary. I keep going somehow, and at least my own hospice team is wonderfully helpful in getting me to become more cheerful at times.
Doctors aren't perfect,and dealing with cancer must be horribly difficult for them, day after day.
I'm so glad to hear from you, Charlean, in spite of the circumstances, and I'll never forget Harley and what both of you went through.
A difficult post to write Charlean but well written. I agree with you that all too often we are left to bumble along hoping some of the drugs will do good. I think in our case it would be preferable to be told what sort of future there is, with drugs or without, some of them as QOL is paramount in PCa.
As you mentioned, nobody really knows what the real future will be. No doctor can know if a drug or treatment will work for an individual. We see this all the time on this group, so men respond to a drug, some for a short time and others for much longer while others never respond at all. I do think it would be more honest for a doctor to say we just don't know, but in my experience about ??? of my patients do have some type of remission.
I do believe in honesty, but we also all need some level of hope, without hope we are no where. Finding that balance is difficult and I believe it does take a very experienced and sensitive doctor. Sadly many docs are not either.
Just as you are angry and upset about what seems to be a not honest answer from your friend's doctor, I also resent those doctors who do put an expiration date on our heads. Nobody can say but before, expired on ??/??/????.
We also can not discount that for many doctors telling someone how grave their situation is is just too hard for them. In modern society we have pushed out death from our living, Fifty years ago people stayed at home to die, death was a part of living. Now it is a mysterious thing removed from our life. Fifty years ago we kept our family home, held their hand as they died in their own bedroom, in their own bed. If a person was waked, the wake was at home, not in a funeral home. Death was as much a part of life as was being born or a first birthday party. Now it is removed, mysterious and scary.
Our doctors are people too, despite their experience with death and any relationship they might have developed with their medical school cadaver, they too are often put off or even scared of death. This is not meant as an excuse, just what I believe is an explanation.
Joel
Thank you Charlean for your post. I still relive the horror of my fathers death when I was 17. He was given six months when he was Dx with inoperable brain cancer. He lasted 18 months from the first seizure, to drowning from fluids. He was at home, his wishes, he was 41. As I grew older, I often thought about when will I get it. I was ecstatic when I hit 50. Seven months later, I was Dx. Oh, well. But, forty years on, I still think of him often.
Peace everyone, Joe
Charlean
There is false hope and there is false no-hope.
But the doctor should try to be in touch with reality and help the patient be that as well.
For the doctor to "hope" that it was muscle pain seems mean to me, and unfair. Bad. Awful. Physical therapy? Really? I am so sorry.
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My prayers are your prayers....
Stage 4 Prostate cancer
prostate cancer in bladder - removed - now renal failure
dad has advanced prostate cancer 
Is hospice care what we need?
Advanced Prostate Cancer Update and Xgeva
