Please help...Questions about my grandpa

17 years 6 months ago #1575 by wendy
Replied by wendy on topic Please help...Questions about my grandpa
Hi again,

If I understand correctly, you are describing cancer that's recurred two months after bladder removal. It can happen that bladder cancer spreads that fast, yes, I'm sorry to say. If your grandfather has metastatic cancer it can also cause fevers sometimes.

It sounds like you're getting pieces of info, not the whole story. Part of the problem is that you are getting it second hand, or even third hand. And also that you aren't able to discuss things openly with your grandfather.

If you are living far away and not able to be there all the time, it might not be wise thing for you to concern yourself with every detail of what's happening. You just might have to leave it up to your mother and grandfather to deal with, otherwise you can make yourself crazy and that won't help anyone.

Sounds like the CT misdiagnosed the recur, then a PEt was done which confirmed it was cancer. I'm surprised a CT would be so far off the mark (maybe it was ultrasound?).

As for nutrition, if your grandfather isn't getting enough food in, there is the option of TPN, total parenteral nutrition, but that means getting a permanent IV line put in, and getting food through a tube in liquid form. This is also considered a 'treatment' and as such might disqualify a person for hospice, which is about pain relief and comfort, not extending life. It's a very tough choice, our family was faced with it and chose for the TPN instead of hospice because that choice was my sisters to make. She had breast cancer.

Is your mother computer savvy? If so, send her over.
All the best,
Wendy

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17 years 6 months ago #1573 by deb
Hi Again;

Hope your exams went well and you are taking good care of yourself.


Sonds like there is an infection from the first surgery and now a regrowth of his cancer (could not tell if you meant the reoccurrence was in the bladder and was seen on a cystoscope).

Can the surgeon help him get rid of fever and infection with antibiotics or through an arthroscopic procedure that will allow them to take out the "infected tissue" and then bathe the area with IV anitbiotics? That would help him all the way around, in terms of getting rid of the debilating infection/fever without making him undergo general anesthesia and major surgery to correct the problem.

As far as the regrowth of the tumor/s. They may need to have him be healthier before they consider going in via another TURBT (with the aid of spinal anesthesia, not a general this time due to his weakened condition). They could ressect the tumor again, if it is only in the bladder and has not invaded the bladder wall he could do well getting stornger and face soemthing like BCG. The tumor alone typically does not cause a fever.

Yet, before you ask them about any of the above, make sure the doctors talk with you and your Mom about what their course of action is going to be. Are they trying to just make him comfortable and think that he is not a candidate for any more medical/surgical intervention or are they trying to determine if they can fight several things at once.

Best of everything to you,
Deb

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17 years 6 months ago #1568 by johnnyxu2k2
Replied by johnnyxu2k2 on topic Please help...Questions about my grandpa
hihi...once again..thanks alot for the attention i got from this great site....in the past week i was busy studying for my midterm while trying to understand more about my grandpa's condition. Just now i have a few more questions to ask...this is the story...my grandpa went to did this Utralsonic check thing...and two of the doc told us..that the object in his tummy is not CANCER...but something like a piece of infected flesh from the surgry...and my grandpa was and still having fever..around 39 degree C...and two days ago my mom broght him back to did a CT ...or something that's more accurate about tumor....and the result came from the doc is recurrence .. TWO 4CM turmor connected together....my question is...will the tumor cost him to have fever ... and will it acutally grow that fast ?? coz it's only been one and half month of his bladder remove surgry.... and...since his get weaker and weaker bay by bay..and he's having trouble eating....can we give him some protein powder and vitamine pills ??? we just hope to keep him healthy for the last of his days...
thanks...

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17 years 6 months ago #1484 by deb
Is your name Johnny? I am taking it from your login name and do not want to call you by the wrong name every time I write to you.

Here is a suggestion, based upon what you have heard from the docs. Take your Mom and go into see the doctor together, two sets of ears are better than one. Ask why they first thought they could not help him due to his weakness and age and ask what has changed that they now think they can reduce the tumor with some form of treatment. Treatment will be one of three things, more surgery which they say he is not a candidate for in your previous note; radiation that is viable and less toxic (which was what my dad-in-law did and it helped him survive another year in relatively good health) and lastly it may be chemo (could be what they are talking about but will also hit him pretty hard if he is already weak).

So, he does not know his diagnosis? Was this his choice or the family's or doctor's decision to keep him unaware of what is really going on? No judement trying to be made here but I hear you say you want to see him and share with him but have the horrible burden of not being able to speak the truth. Ask your mom for clarity on this one. She is surely going to understand your pain and confusion. Your gradpa sounds like a strong and proud man, he may be able to handle more than others think he can and he may want to get some things out and talked about if he knew his time was limited. He could also be helpful to the doctors in his treatment if he were more a part of the deicison making process. Never an easily answer, but more and more these days regardless of the age of the cancer patient they are brought into the discussion about their situation.

We are there for you,
Deb

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17 years 6 months ago #1477 by johnnyxu2k2
Replied by johnnyxu2k2 on topic Please help...Questions about my grandpa
thanks alot for your great infos....i think deep in my heart, i know there is very little i can do for him....but somehow i just can't keep myself up with that fact. This is really a torture for me and my mom....i just called him today...and he told me that he went to did a check up yesterday. and everything is fine...the doc told him...his pain is just some infection....he told me not to worry about him…and focus with my school, and be healthy…..but he doesn't know the truth....i don't think i can't have an other conversation with him..because I’m afraid that I am going to collapse…maybe I’m a very selfish person….i do want to be with him for the last part of his life..but the same time I don’t.. coz I don’t want to see him leave me. I can’t even take that he’s become weaker and weaker day by day ….i always have that strong and tough image of him in my mind…now to see him have trouble walk …sigh…this is life…..once again thanks to all of you great people….i have one more question tho..i talked with my grandpa’s doc today…he told me that, this reoccurrence is because the tumor was in my grandpa’s bladder has penetrate the bladder ….so the cancer started to grow in the lower pelvis area….and there’s one treatment which can make the tumor stop grow and become smaller …but it depends on the patient…so there is still a chance to control the tumor grow….is that true? And…he told me since the tumor is not growing on any life threatening organs…with medicine control and that treatment it might help. Once again thanks a lot to you guys…I really needed your support.

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17 years 6 months ago #1470 by mikmckna
Replied by mikmckna on topic Please help...Questions about my grandpa
Johnny,

Here is a link to a site dealing with cancer related pain and pain management.

www.cancer-pain.org/index.html

I am 5 weeks post-op from bladder removal and doing well however my dad learned 6 months ago that his Uveal cancer (eye cancer) had metastisized to his liver. Pain is starting to interfear with his daily activities as well. He is afraid of getting all "Doped" up but from what I found, pain management is not about druging someone into a stupor. I wish you and your grandfather all the best.

Mike

Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

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