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Re: What do others think about this story?

Aloha Dyan,
I am sorry about your father's condition, and how he got there. It is a sad story. You did not mention where you lived although this kind of medical farce probably happens more often than we would like to believe. I suspect there are many that do not know much about their condition, especially if they have prostate cancer.
At this point, it is better to concentrate on how to make your father's life more comfortable. As you've probably read on this site and others, the outcome of prostate cancer treatment is impossible to predict. It is good that you have an understanding oncologist. So many times we men get into health issues that we have no control over and the medical profession is of very little help.
Just try to be with your father as he is in a position of having to trust doctors. Doc's are human and they do make mistakes, they are not GOD's, even though they may act like it.
Keep us posted of your story as there are among us those that have been where your father is going now.
Best of luck,
Joe
Hamakua Coast

Re: What do others think about this story?

Aloha Joe, thank you for your wonderful response and advice. It's nice to discuss this with those who can understand. We live in New Hampshire and may see a medical oncologist in Boston. At this time we are seeing a wonderful radiation oncologist. We have only consulted with him. Today we found out there are areas of concern in the bilateral upper lobes of his lungs. Looks like medical oncology for chemotherapy. Normand has a biopsy of the lung next week.

Re: What do others think about this story?

Dyan, my heart goes out to you and your father-in-law reading this story.

At the very least this story should be a clarion call for ALL of us to get copies of ALL of our tests and medical visits.

When I found the YANA site, I read of the importance of getting copies, but I didn't take it to heart and did not get a copy of my biopsy results showing prostate cancer last fall. I wanted some more info, so called and almost had a falling out with my urologist when I was told, "That's way more than you need to know". Luckily in my case nothing was hidden; and when confronted, the urologist took it well, and has been very supportive, and has copies of all tests waiting for me since.

All the best to you and Normand.
Roger in Indiana

Re: What do others think about this story?

Dyan,

You are quite right to be angry, sad, mad. What happened to your father-in-law Normand is inexcusable and would, I think, be very good grounds for legal action against the doctor who simply failed in his duty. In these days when men have biopsy procedures for PSA levels below 4.0 ng/ml it is just unthinkable for a PSA of over 100 ng/ml to be ignored.

A PSA level of that magnitude could have been causd by BPH or infection. That is true, but to simply assume that this is so, to fail to run further tests, to fail to biopsy is, in my opinion absolutely inexcusable.

Having said that, as Joe says, don't let that shift your focus away from providing all the help you can.

It seems that it is likely that Normand has metastasized disease - the aggressive nature of the Gleason Score of 9 and the 'bad news' of the latest CT scan seem to portend that. This does nt mena that all is lost, but it does mean that expert help is required, and a good oncologist is the person to consult. They are expert in dealing with cancers.

Can I also suggest you join Advanced Prostate Cancer Group . There are many men and women there with years of experience in dealing with the issues faced by men with advanced disease and I feel sure you will get help from them.

Terry in Australia

Re: What do others think about this story?

Thank you for listening and responding. We live in New Hampshire and we are seeing a radiation oncologist now. Normand will need to see a medical oncologist in the very near future.

Today I took him to f/u with the radiation oncologist for the result of the chest CT scan. Just as we thought they found area of concern in the right upper lobe and the left upper lobe. So at this time radiation beam to the prostate is not an option.

The oncologist feels that it may be 2 seperate cancers. He thinks the lung is a primary cancer. On Tuesday 6/29 Normand will have a lung biopsy and that Friday we will learn more. It looks like chemotherapy is the only way to go. He will continue the elegard injections every 3 months.

I am staying optomistic for him. It is just a shame we didn't know about the PSA 2 years ago. I believe things would have been a little better.

Thanks for your thoughts on this. Terry, thank you for the website i will join them.

Re: What do others think about this story?

This Doctor should be struck off. It happens too often and is unacceptable. My husband's Doctor failed him too and I hate him for what he did.

Re: What do others think about this story?

Hi Jennie, I am so sorry that your husband had a bad experience too. I am a nurse and I know doctors are not god. I know not everyone can be saved and sometimes it's just our time. But, this is just wrong not following through. Not telling the patient important information that could ultimatley save his life or give him more time. I don't want anything from this doctor. I just don't want this to happen. I use to hear about these things. This day in age this stuff shouldn't go on. In my mind there is no excuse.

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