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Ugh I just want to yell

worriedson714
Posts: 88
Joined: Dec 2019

                   Ugh sitting in the hospital as my dad is in another all day surgery and I have no family here I'm alone . Supporting my dad best I can thanks alot covid and I just found out he lost his bladder and prostate. Oh and the doctor said there thinking this surgery will give him 5 more years . Which really annoys me that doctors think they get to choose that . Call me greedy but I don't want no time limit on my dad's life .Its not bad enough I have to tell my dad he now has a second bag and they add this to it . 

               It's just so frustrating and this covid rules as annoying it sure would be nice to have some family support here . Just because my dad doesn't have covid hospitals act like he doesn't matter at all . But I guess the good news is they got out all the tumor . I doubt that will make my dad much happier though it's just so annoying and I can't yell in the hospital and I needed to rant out somewhere . Thanks for listening guys it's just sad anyone has to go threw this my dad and no one on this earth deserves this . Okay I am done ranting now promise . 

 

Update - The 2nd doctor who was in the same surgery came out and basically told me a different story then the first . The 2nd doctor said the two doctors never talked about the surgery giving me dad five years . Also the 2nd doctor said they didn't even get all the tumor that it grew into my dads tailbone . Which now they say nothing more then can do with surgery so it's chemo or radiation . But the doctor didn't seen to have alot of hope for those is cancer on the tailbone so bad ? She said it was so little of a amount it would not even show up on MRI . I am really starting to feel like there is no good doctors left out there how do doctors do a 7 hour surgery together and have different opinions on it after ? Ugh just more venting I feel so hopeless . 

 

New Question - figured I would use the same thread my dad has had diarrhea since his surgery anyone know if that's normal ? One of the things they did was a small bowl resection I informed the surgeon they are doing a test on his stool . 

SandiaBuddy's picture
SandiaBuddy
Posts: 1103
Joined: Apr 2017

All of this is very tough and you should vent all you desire.  But five years is a long time and with effort you both can do better.  Plus, you are young and alive and have a life ahead of you.  I hope you can get through these tough times and find peace in the future.

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

I'm sorry to hear about your father, and glad he is out of surgery.  No doctor can predict how much time that your father has, so don't put much stock in a number.  I'm surprised that they even gave you a time limit.  Radiation can reduce cancer a lot, so between that and chemo it could be a better outcome.  It's okay to vent as we all have.  Just come back on here and let us know how you and your father are doing.  We are always here for moral support.

Kim

Tueffel
Posts: 108
Joined: Feb 2020

Sorry! You seem to have a tough day! My dad also experienced how covid changes things. He was depressed after the liver surgery, wanted to die and during these 2 weeks he could not have any visitors. We are in tough times at the moment and it is not easy to family and patients. 

I am sorry that there are 2 doctors with 2 opinions. One says everything is out and the other one denies. It is really hard then. It is sad that some part of the cancer might be still inside. I am sorry to ask but with everything you told here: your dad was diagnosed with stage 3, right? I am not an expert but right now it feels more like stage 4 already. 

Just stay with your dad. Talk with him. Maybe it would be nice for your dad and you to see a psychologist? I was thinking about that when my dad was diagnosed but then covid came. It might help

 

worriedson714
Posts: 88
Joined: Dec 2019

No vistors that's really hard I'm sorry your dad had to go threw that my dad has blood clots in his lungs and phenmonia so he's still in the hospital this has been a bad surgery . But they allow 2 vistors at least which still sucks cause my brother aunts can't come up . 

 

You know idk the answer to that I know when the tumor was just touching his prostate and bladder they considered it local so it wasn't stage four . So I assume it's the same with the tailbone now everything is still local no one has told us stage 4 I got to find that out . All they have really said is they got 99.9 percent of the tumor out and it will be years before what the left in becomes a real problem . And they want him to do targeted radiation when he heals and this surgery complications are taken care of . 

Real Tar Heel
Posts: 113
Joined: Nov 2019

Yeah, it's crap. After surgery, my youngest could not come to see me. We could video chat though, which was fun.

That is strange about doctors miscommunicating. Im at a teaching hospital so I've experienced residents getting things wrong but not the doctors saying two different things.

TBH hearing that I had five years left would be kind of a victory because us stage IV people aren't supposed to make it that long. Beat the odds! LOL. It's just a probability, though, it's not a definite diagnosis. They never seem to mention this. It's either, "Everything is fine, don't worry, we got you!" or "Well, it's going to be tough, chances aren't good." We aren't children, just explain that there is an X% chance.

I'm not sure I understand about their staging. If he had a tumor in the colon before and he now has tumors in the prostate and bladder, it is considered stage IV. My docs have never officially staged the initial tumor beyond saying it was T2 N0. Don't worry about the label, worry about him and treatment. Also, when you say "tailbone" is it actually in the bone marrow or in the rectum?

Tueffel
Posts: 108
Joined: Feb 2020

I believe the coccyx is the last part of the vertebral column. You can for example break it when you fall on your buttocks. But then this might be a common word in English I dont know about. 

 

But I agree: this staging is just a number. I met her someone whose husband was diagnosed with stage 4. Liver and colon surgery in one, chemo and since then nothing ever happened again. Just try to enjoy your time with your dad!

worriedson714
Posts: 88
Joined: Dec 2019

He just had one tumor in his rectum problem is it grew and started to " invade " other things starting with the prostate and bladder . I believe by invade they are just saying it was touching them and now it touched the tailbone on the back side of the tumor. 

So there is a very small microscopic amount on the tailbone now as well doc said we got 99 .9 percent of it . The doc was clear it's not in the tailbone it's on it . And she believed it won't grow into the bone thinks it will grow back the same as it did . 

That's the hardest part is the docs saying two different things this is my dad's 3rd team of docs and I haven't felt good about any of them . Now they say he has to wait 6 months before more treatment cause his surgery had complications blood clots in his lungs not bad not life threatening thank god . But I feel like 6 months is to long to wait I want to get back in there with treatment and they won't even give us a oncologist yet ugh it sucks . 

Real Tar Heel
Posts: 113
Joined: Nov 2019

Okay then, sounds to me as if it's not yet IV based on your description. I don't know about this 99.9% business... My surgeon would be so apologetic, or would have explained before hand the possibility. They have to be thinking about how to shrink or otherwise diminish what's left. But if it's not yet broken through the digestive system, not in the lymphs or cardiovascular system it's a good thing!

I had some clotting due to chemo. I had to give myself shots of an anti-coagulant until chemo was finished. In this case, 6 months seems like a long time to wait. Are they not treating the clotting? One course of injections should clear that right on up, but they can give chemo concurrent to the anti-coagulant. He definitely needs the recovery time but 6 months...

You're doing well. Hang in there.

worriedson714
Posts: 88
Joined: Dec 2019

They did explain before hand this might happen but the surgeon won't even tell me what there thinking . Says its to soon to talk about chemo or radiation just mentioned its in a good spot for targeted radiation . The way there explaining it is that whats left is simply on the bone . But I don't know how they know that without checking with a biopsy and the surgeon said the amount left is to small for that . 

They have him on blood thinners a pill form though for 6 months I am for sure going to insist they start treatment before the end of that . Cause there acting like they can't do treatment before that the surgeon seems like she doesn't even think treatment will work . Cause chemo and radiation didn't shrink it the first time so idk if there going to be even willing to do more . 

@snapdragon this might sound dumb but I didn't know I can't do that thanks for sure I'm going to do that. We made this mistake once waited for u of m and the cancer grew so I'm not liking the idea of waiting again . Beyond normal time it takes him to recover from surgery . 

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

Make your own appointment with an oncologist.  Be your dads advocate!

Don't take oncology advice from a surgeon and don't take surgical advice from an oncologist.

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

Great advice, Snap!

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