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Updated please help family is in crisis

worriedson714's picture
worriedson714
Posts: 309
Joined: Dec 2019

                       Sorry if I been posting to many forum topics not sure if that's against the rules or what not . Just I have been really worried and so has the rest of my family . See my dad's last pet scan showed alot of hypermetabolic activity . 3 new mass's and enough hypermetabolic activity in his adominal wall for them to say it's spend there . Also there is a fluid build up with hypermetabolic activity around it  Now the problems are many with this . Firstly my dad has a kidney stone that he has had for about 20 years and now has mild hydronephrosis in both kidney's . The onc didn't even mention that to us which seemed kind of weird to me . 

              Plus my dad had surgery only 3 months ago and his surgeon actually told him a pet scan might glow from that so it was not a good idea.And the SUV uptake is no where to be found on the pet scan report just says moderate and minimal a few times . Which in my research I have done usually the suv uptake would be listed on there . Now the onc wants to do a biospy however it's risky to . Cause my dad is recovering from two PE's in his lungs and on blood thinners which is a huge worry for us for the biospy . So stopping the blood thinners for the biospy they say is a risk but the onc wants to stop them two days before the biospy . 

             My whole family has talked about getting a second opinion as the pet scan seems to have many flaws . However cause the onc said that a second opinion would take way longer and we are kind of in a hurry cause my dad hasn't been on chemo in a long time . My dad made the choice to stick with the onc . Now we have had bad luck with onc's before his last one told us there was nothing more they could do and sent us away .         

           So maybe I'm overworrying but I can help but feel like this pet scan left to many questions mainly about having no suv uptake on it . So I feel like maybe there is to many questions to have a risky biospy cause of my dad having to stop blood thinners . 

          My dad is having a tough time with all this anixety really getting to him so I don't know if I should bring up a 2nd opinion again . Or just let this play out with this onc and hope and pray for the best . Just looking for opinions on if I am overworrying or not . Figured put it all in one topic vs posting alot of topics like i have been again sorry if I am overposting topics can really use some good insight . 

 

           Also my dad has neurofibromatosis which is a diease that causes tumors on nerves that can happen all over . The onc seems to think that has nothing to do with the cancer . My worse fear is there the onc is missing something by remaining only focused on the cancer spreading . When clearly there is alot of issues here that don't seem to be getting dealt with .

  

               Update - Today we found out my dad has a UTI so now of course he thinks that is why his pet scan " glowed " . Now he doesn't want to do the risky biopsy he wants to wait till the infection clears up and do another pet scan . The onc seems to act like this isn't a big deal and is leaving it up to our Primary Doctor to say if my dad still should have the biopsy . The onc nurse actually told me she had no idea if a infection cause cause " glowing " on a pet scan . Now if though my dad's pet scan was Nov 12 and at that time he didn't have dark urine like now . He still had alot of kidney pain from his kidney problems . So could the UTI have been why the pet scan " glowed "? We are in a bad spot my dad has been off chemo for over 6 months . And waiting to get a 2nd opinion if his cancer has spread has me so worried but of course he wants to . 

             My whole family is so worried about this everyone wants my dad to do something else . I can't help but feel if we make the wrong choice here things gonna get way worse . We have to stop my dad's blood thinners in the morning looking for some opinions on this desperatly . 

abita's picture
abita
Posts: 1066
Joined: Dec 2017

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. 

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

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.  

abita's picture
abita
Posts: 1066
Joined: Dec 2017

oh, and don't worry about over posting. I feel like we all have anxiety waves where we post a lot, and then times when we just try to comfort others going through it.

worriedson714's picture
worriedson714
Posts: 309
Joined: Dec 2019

Okay thanks for your help 

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

it is your dad's choice what he chooses to do, and everyone, while sharing their thoughts with him, must respect what he has decided. 

I agree that any infection can skew the results of a test.  PET scans are very sentisitive. 

You are going to 'overworry' its the nature of the game for patients as well as their loved ones.  And there is no limit to how many posts on the forum, so don't 'overworry' about that, either. 

I think at the end of the day, many people second guess the decisions that were made during treatment. What if.....  What if... What if....   But What if's don't change the outcome.  Decisions have to be made, some times in a hurry, and if things don't go well, you will always think the option you didn't take would have been the best, but nobody really knows. 

Your dad will have to make the decision and then youi all get to run with it. 

It is not an easy disease to navigate. So different for so many people. Not just one good way, but several. And one has to weigh up quality of life with quantity of life.  No, it is not an easy road at all, and I wish your dad well. 

Tru

SnapDragon2's picture
SnapDragon2
Posts: 568
Joined: Nov 2019

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?

worriedson714's picture
worriedson714
Posts: 309
Joined: Dec 2019

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 . 

SnapDragon2's picture
SnapDragon2
Posts: 568
Joined: Nov 2019

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.

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

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

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

PS: I am not sure what is the past tense for glow up... 

Glowed is the past tense of glow, but doesn't seem to fit. I would use 'lit up'.

Your English is wonderful.  Believe me, I have seen worse from Enlgish speaking people - not on here, of course Wink

Tru

worriedson714's picture
worriedson714
Posts: 309
Joined: Dec 2019

I just make it up as I go :)

worriedson714's picture
worriedson714
Posts: 309
Joined: Dec 2019

                    Thats what the onc said I can't make sense of the report it still bugs me there is no suv uptake numbers on it . But yes the onc said it was in his butt muscles which is why I want him to do the biopsy . My dad step mom aunts think the kidney issue and infection needs to be fixed first . Which is insane to me I just want biopsy so if he needs treatement we can get ASAP . 

               The onc had my dad come in today do bloodwork check him out and still wants the biopsy. But at this point idk what my dad is going to do . I am just hoping he has it monday and it's negative but for sure he needs to have it . I don't understand how the rest of my family don't know that . 

I think it's " glowed up " lol idk :)

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

It's frustrating to not have a pathway to go forward with and when you do suddenly things change.  Your dad has to make his own choice with this, however getting that second opinion is very important at this point.  He's lucky to have you as someone that is trying to get the right answers for him and trying to help him in his decision.  You can give him your opinion, but ultimately he has to be the one that makes the choice.  Hope his infection heals quickly as this is something that is just another hurdle he has to deal with.  Wishing him the best.

Kim

mojogirl67
Posts: 308
Joined: Oct 2018

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

beaumontdave's picture
beaumontdave
Posts: 1164
Joined: Aug 2013

Nice, M..............................................Dave

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

I have a video blog, taken during chemo, when these were my very words.  I was so sick of being this sick person with no energy, no life, just sitting on the couch in a miserable heap. Not me. Not close. 

Your words are wisdom, Mojo

Tru

worriedson714's picture
worriedson714
Posts: 309
Joined: Dec 2019

@mojogirl your words say it perfectly thats exactly how I feel and what has been happening . I try to balance it daily my wishs and respecting my dads . Sometimes I have failed and been selfish but I am trying to do better . I have had many heart to hearts with him he wants to fight but also says it's all wearing on him and he wants a break . My heartbreaks just typing those words at this point I am just waiting to see what he wants to do unlike me he doesn't obsess over all this . He wants a second opinion but he also understands how much time that takes so he doesn't really know what to do . I just wish I knew what he was going to do the biopsy is monday but I am just trying to let him enjoy his weekend . I need to trust him to make the choice thats best for him which is hard I just want to fix this.  Thank you for your kind words they help alot and I will be praying for you to hope you enjoy hawaii . 

 @Annebelle thank you for your input to it's just hard to take the " son hat off " at all but your right on I am trying to stay more in a supportive helpful role . 

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