Advice,please...

pink05 · August 2006

Hi everyone,

I went with my dad to his appt. with his oncologist this week and during my conversation with him, he mentioned that my dad has had an "almost complete response" to his chemo. I was confused because at the last appt., he told us that the last CAT scan was clear. Now he is saying that there is still a small spot and that he remembers telling me and showing me the spot on the film. I know what I heard and saw, and I did not hear him say anything about a spot, nor did he show me any spots. Then he said that when you look at the scan twice, you can see the spot the second time and that it can be left up to interpretation. Then he said that we would have to wait until the next scan to determine if my dad would get a break. Again, he contradicted what he said at the last appt. Last time, he told us that my dad would continue chemo for two more months and get a break. Now, all of a sudden it has changed.

I am so frustrated about this. This is not the first time that the doctor has done this. Once before he told us that my dad had one met and later on during a phone conversation, he said there were two and made me feel like I was the one who misinterpreted what was said. I don't understand why this doctor sometimes contradicts himself. I have to believe that it is because he is involved in so much research and is so busy with that and all of his other patients that he can't keep it straight. But I don't know that I should be making excuses for him. I, myself am in the medical field and hold myself to much higher standards. I understand that people make mistakes, but how many more mistakes are excusable when you are dealing with someone's life? My dad is starting to get worn out from being on chemo and I don't know when he will get a break, if ever. At some point, I think the chemo will start doing more harm than good. What kind of quality of life is that?

Anyway, I don't know what to think of all this. At this point, I'm not sure it would be a good idea to switch doctors. Besides, I don't know where else we would go. This doctor does seem to know what he is doing most of the time, but now I'm not sure if I trust him.

Any advice?

Thanks,

-Lee-

KathiM · August 2006

I had what I considered to be an onc that was about the same as it sounds like your dad's is.....She forgot things from visit to visit, even once injected some Neupogin that was 6 months past its pull date.
Insurance made me stay with her, and the comforting thought was that she HAD to review my case each week at a tumor board with other oncs in the facility. Could be THAT is what is happeneing here, and why the story changes. He/she is getting input from others that changes the story.....
If you can, switch....I have and I LOVE my new onc!!!! She is everything the other wasn't. Including professional.
ALWAYS remember, this person works for YOU, not the other way around!!!!

Hugs, Kathi

mindy10 · August 2006

Hi Lee, I think its because they have so many patients. My dad dr said he could go on a maintenance pill once off chemo then he told my sister he never said that and she wrote it down. Unfortunately I think my dad taking the 3 month break made his cancer progress. The bottom line is you have to be on chemo at all times or it give the cancer time to spread. My dad had cancer in his lungs, lymph nodes and one in his stomach so he had alot more than we thought. The dr said dont worry about your lungs and those are the ones that gave him difficulty at the end. There was much more tumors when they went in there with the camera to drain his lung. The dr said you cant tell how big they are from cat scans. He said that after another dr told us the ones in his lungs where bigger than the dr told us. Its just an awful thing to go through. The bottom line is its up to your dad and if he has no quality of life on chemo its not worth doing it but if he is still enjoying life then keep him on it. Mindy

AuthorUnknown · August 2006

Hi Lee,

It looks clear to me that it the time for a consultation with another doctor.

Best wishes and God Bless,

Eleonora

vinny3 · August 2006

Hi Lee,
That is why I always advise getting a copy of the reports for your records. It lessens the confusion and also makes it easier in getting another opinion. Sometimes it is not clear if a "spot" is cancer or not and different radiologists may interpret the scans a little differently. If your dad's scans have been read by different radiologists, maybe you could ask to have one of them look at all of the scans (which they should be doing anyway).

****

scouty · August 2006

Hi Lee,

First, thank you for the bday wish.

You have gotten some good advice thus far. I would recommend calling another oncologist and get a phone consultation about what they may do differently, they know how to get the records. I never regretting changes oncologist and know the option is always there even though I like the one I have now. It may be nothing different but you should give it a shot. Regrets later are never good. Your Dad doesn't even have to know.

Good luck and please keep us posted!!!!!

Lisa P.

I really admire your close attention to your Dad's health. Keep it up but also be sure to look about for yourself.

pjenks57 · August 2006

Your post sounds like you have landed in my world. My husband and I had the same thing happen to us. Our onc dr. lied and lied and sugar coated everything. I remember several lies but one time he told us that hubby's cea level had dropped to 3.2 and the next time he said the level was 32. I jumped out of my chair and demanded an explanation which he couldn't give other than I must have mis=understood. NOT hardly. Those numbers were very important to me and I did NOT hear him wrong. I could fill this page with examples with lies and sugar coating but after the straw broke the camels back we changed to another doctor. We both loved this new doc. The first one was well loved in the area and WAS very smart but his bed side manner lead much to be desired to us. We were the kind of people who wanted to know what was going on. We wanted information and he was unwilling to give it. The doc didn't like me AT ALL. I asked too many questions and demanded answers which he would try to walk around, would frustrate me and leave out the door. Regardless we left and found a doc who would tell us everything good, bad or indifferent. We told him we wanted information and he would give it to us. His thoughts were that since hubby had cancer so bad that he should be allowed to live the best life he could. If the chemo was bringing him where he wasn't having a good quality of life then it was time for a break. He was there to the very end. We both thought the world of him and his staff. Truthful and God loving. Just what we needed and deserved.

Remember you pay these suckers to do a job for you. They are to work for you. If you want the truth you deserve it. If you don't want to know then that is fine too. It is your decision and if you don't get what you are paying for then (if insurance allows) LEAVE and tell him why.

Sorry to ramble but this hit home for me and I know how frustrating it is for you. Take care and remember we are here for you.

May God bless you and your family.
pj

Kanort · August 2006

Hi Lee,

Your continued dedication to your dad and his care is remarkable. I can imagine your frustration to know what you heard, but to be made to think you misunderstood.

I believe I owe my life to my original oncologist. He stepped outside the box to offer me the treatment he knew was the best for me rather than following standard protocol. (He gave me Folfox before it was approved for administration for stage 3.) Anyway, he was replaced by an oncologist who was more "company friendly" than patient friendly. I always felt my new oncologist had his company's interests ahead of mine. So, I now travel four hours one way to see my original doctor. It's not an easy feat, but one I will continue to do because of the trust factor.

Please keep us posted on your decisions.

Hugs to you and your dad,

Kay

Advice,please...

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