Updated please help family is in crisis

I can't say as to your Dad's case, but I think a 2nd opinion is important. I wish I had gotten a 2nd opinion because I sometimes wonder if switching from folfox for mop up chemo is why I am on "lifetime" chemo instead of being "cured". Maybe it was the right choice, maybe not, but at the time I thought it was a bad choice, so now I look back and wonder. I also wish I had gotten my 2nd opinion sooner because maybe I could have stopped the spread before reached my lungs. So for me, the 2nd opinion would have saved me some of those sleepless nights where I wonder.

I also had already started my chemo for the recurrence when I got the appt for the 2nd opinion. So, not sure about your father's case, but people do get 2nd opinions while on chemo, so as not to wait for treatment. You are better to judge what is best for his mental state. 

Always Always have scans sent for an outside reading and compare the two.

What was the reasoning again for not being on chemo when he has active disease?  You might have explained and I missed it?

I would actually go for a biopsy. I know it is possibly risky but I think you wrote here that it glowed up in the gluteus maximus region? If yes I have really hard time to believe that it glowed up there when he had an UTI. Why would his butt glow up when there is nothing related to the urinary tract. 

If the glow up are in the region where the urinary tract is I would be more careful. I dont know how to read PET scans yet, I saw some but that does not make me an expert and I am not the one who has to decide to go for treatment. 

But even if it glow up in the urinary tract area I would still go for biopsy. I believe I would just like to have a definete answer. I would go mad until the next PET scan, overworrying. I would like to have a quick and sure answer and I think a biopsy now would give me that earlier than waiting again a few weeks for a PET scan. 

PS: I am not sure what is the past tense for glow up... Reading, learning, studying in English and still have no idea

worriedson714 said:

Well

You can just have scans sent for outside reading but not like change onc's ? that might be a dumb question 

 

Well see he had one surgery surgeon didn't get it all sent us somewhere else cause she couldn't get what was left . Then u of m said they didn't see it made us wait 3 months test again . Dad wasn't happy with waiting went to get another opinion . That surgeron agreed to do the surgery but said no chemo first cause needed surgery growing to fast for chemo . She didn't get us all either now the new onc says he see's something on pet scan so need biopsy even tho the UTI he has could have been the glowing on pet scan . But since no one knows if he has the UTI during pet scan he had some symptoms but not like now says still need biopsy before treatment . So it just seems like there always in a rush for surgery or to test something no one really even explained why it's been almost a year with no chemo . 

Yes Sir!  You are entitled to a 2nd opinion always.  Get with the outside hospital and see where to send it.  Get the copy yourself to send and you will get the results.  You can also request their findings be sent to your onc, which I recommend also.

My heartt aches for any caregiver who is also a child or spouse. The relationship dynamics are so hard. Of course we want to swoop in and fix everything. We want to take the worry and stress away from our loved ones and make everything ok. I have been on both sides of the fence and experienced this from angles I never wanted to see. When my husband was going thru his journey with cancer, as a wife I wanted to keep him with me forever. But, I didn't want him to suffer endlessly thru procedures and treatment that came with risks and no guarantees. It can drive you mad trying to balance being supportive and keeping YOUR own wishes in check. I think ultimately it should be your dad's decision with all treatment choices if he is of sound mind. LISTEN to him. My daughters both wanted me to pursue more chemo and treatment with my own cancer in the beginning. I absolutely knew I would NOT put myself thru any more misery. Of course they want to have me around as long as possible and I understand that. The hard talk we had to have was that having me around in pain with my body breaking down to the point that I was no longer able to live and enjoy the life I had was not what I wanted for ME. My husband chose to pursue every option available down to the end. He chose chemo and a feeding tube and all I could do was support him thru what came down the path with his choices until the end even tho' I wouldn't have chosen to do those things for him. Losing someone to the God awful disease is hard enough. Driving yourself insane down the road with "did I make the right choice for them" is a weight no one wants to carry. Talk with your father honestly and openly and support HIS choices. In the beginning when I was diagnosed as Stage IV, as a parent I wanted to take the worry away from my girls and ease their fears and anxiety by letting them be part of my choices. I realized that the more peace I had, the more peace they would have ultimately and that only comes from doing what is right for ME. As the main caregiver or advocate for your father, keep the other family members fears and anxiety away from him as much as possible and really have a heart to heart talk about what HE wants to do. Even if it is not what YOU would want for him as his child, take his hand and say "ok Dad...that's what we'll do".......Praying love and light surround you in your choices and journey with your father thru this.....hugs, M

abita said:

I can't say as to your Dad's

I can't say as to your Dad's case, but I think a 2nd opinion is important. I wish I had gotten a 2nd opinion because I sometimes wonder if switching from folfox for mop up chemo is why I am on "lifetime" chemo instead of being "cured". Maybe it was the right choice, maybe not, but at the time I thought it was a bad choice, so now I look back and wonder. I also wish I had gotten my 2nd opinion sooner because maybe I could have stopped the spread before reached my lungs. So for me, the 2nd opinion would have saved me some of those sleepless nights where I wonder.

I also had already started my chemo for the recurrence when I got the appt for the 2nd opinion. So, not sure about your father's case, but people do get 2nd opinions while on chemo, so as not to wait for treatment. You are better to judge what is best for his mental state. 

I second that second opinion because I have a permanent ostomy and I don't think I needed one.  My cancer was gone after the really harsh chemo I was on.  I agreed with the chemo but they did the permanent ostomy while I was under anesthesia and I seriously think the doctor did it bc he made 38000 instead of 10,000 with just 4 hours of extra work.  3 other patients complained the same thing.  Doctors are just people.  It's always best to have a second opinion.