Looking for Answers

Thank you, Robin -- I see that your dad is doing his best to enjoy living at this point. It is terrible when despite due diligence we get mets. I wish that we could
both do a "re-take" of the scene in our life's journey in which our due diligence
was not enough to avoid the mets. In support -- Susan

Robin,

Thanks so much for sharing with us...I know that it is hard to write down what is happening sometimes but it does help get it out...I usually feel better after writing...it gets it out of my brain and on the paper or in this case the screen...

As for the Gamma Knife procedure...You do know that it isn't really a knife right. It is a radio surgery technique that is as precise as if they were actually cutting...

I found the following website for you...it sounds like a positive thing in your fathers case...

gammaknife.org/

from that website they also have a link to a brain mets website:

www.livingwithbrainmets.org/

Believe me I know how devastating a Metastatic Diagnosis is on a family, and my heart goes out to you...I hope with some of the options still available to your father that he can have some quality time...

As for the difficulty swallowing...did the CT see anything? Are there any drugs that he is on that "difficulty swallowing" is a side effect? I would ask the Dr. and then also get a list of the meds he is on and check for yourself or ask a pharmacist. I know that that if he had other radiotherapy especially to the chest or neck area it may be attributed to that it is called: dysphagia also if he was on Lovenox (used a lot during hospitalization) that can also cause loss of appetite and difficulty swallowing. Ask a lot of questions I am sure they will be able to tell you something.

I wish the best for you and your family,
Karen

I appreciate reading all of your comments. My dad was extremely diligent about keeping appointments, having all the tests, etc. When it was discovered last fall that his cancer had metastasized, I asked the oncologist how this possible could have happened. How could they say he appeared cancer-free and then two weeks later say it had spread to the bone? The answer was that his cat scan showed that everything appeared to be clean. The oncologist said that the cat scan is not the best way to "see" bone cancer...that it is better at seeing cancer that is in soft tissue. The bone scan showed the cancer in his bone...and now, 9 or 10 months later, MRIs show it in his brain, bone, liver, etc.
Dad is hanging in there. He gets up in the morning, showers, dresses, and then has to rest on the bed a bit. He spends most of the day sitting in a recliner, watching television...but we did get him outside a little bit this weekend to sit in a swing (the weather in Chicago was beautiful this weekend!). The visiting nurse came to see him for the 2nd time today. She said that he will need to be hydrated again...probably on Wednesday. He was hydrated just last Friday. Is that a normal thing? To become dehydrated so quickly? He tries to drink as much as he can, but evidently it's not enough. The visiting nurse is setting it up so that the "hydration" can be done at home. Going to the doctor to have it done is an all day thing and he's just not up to it.
I have another question. He often says that it is difficult for him to swallow. For instance, he was eating an egg today and said that it was hard to eat. Is that common?
Wednesday he is supposed to have another consult with a radiation doctor. They are considering using a gamma knife procedure to remove at least part of one of his brain tumors. I'm wondering what the side effects of that will be. He hasn't given up fighting yet.
Well, that's about it for now. I'll keep you all up-to-date, and, once again, thank all of you for sharing your experiences and being so kind and caring inquiring about my dad. God bless you.
Robin

Hey, everybody -- My situation is a little different and may give you something to
think about. I was stage 3, high grade (sarcomatoid)(02/07) with no lymph involvement.
I got two cycles of mvac -- failed. I got radiation that shrunk the tumor and
scheduled an rc. Pretesting: Mets in lung and liver, cancel rc. (11/07)

So, then we have life with mets. I've worked a full school year as a college
teacher. I have participated in my son's wedding and (no time was wasted)
seen the expected grandchild's ultra sounds. We're planning the wedding of
younger son in July and waiting the baby in the late summer. I felt well
for 5 months, so-so to "struggling" the 6th month.


I had gemzar and taxol from Dec-Feb. but it didn't seem to shrink the tumors/lesions
or stop spreading. We consulted MD Anderson to try to "reset the clock" on my life expectancy.

I have had two cycles of inpatient chemotherapy with Ifex plus adriamycin the
first time and vinblastin (sp.) the last time. We do scans about 6-20.

I feel better again. I still have my fiendish bladder and have to worry what
the tumor there may be up to. It is smaller, we did a second turbt to get out
a calcified tumor, but it still "lurks." I have liver and lung mets.

There can be real life after getting mets -- with or without a bladder in
place. Onward all (if you want to) -- Susan

Pat,
You are so right, look at Mark Rice, and what is going on with his dad, metastisis? or arthritis???
Robin, your post has thrown us into this discussion of why this happens when you follow the rules.. I apologize for getting off track with this thread but we really hate to see this happen to anyone, as it really shouldn't.. Please jump in Robin and let us know whats going on with dad..

Unfortunately there are no guarantees with the "cadillac of surgery". Highest incidence of re-curs is from 6months to 2 yrs after surgery even when everything is seemingly clear prior to surgery. Now having said that there are a ton of variables...right down to the person reading the tests, CT scans, PET scans, bone scans. They are often wrong. Finding an institution with a top notch team of surgeons, radiologists, oncologists in every area....there aren't many in the field of bladder cancer unfortunately. In the case of U. of Chicago they are at #l7 in top hospitals in the US.....but maybe not for Urology. Check US News Report for top urological hospitals in the US....
www.usnews.com/directories/hospitals/index_html/specialty+IHQUROL/state+/page_number+1/page_size+10/sort+/name+/metro_area+/zip+/distance+/detail+less
Often to few nodes are taken out and often what appears clean on the scans is not so once they get in there and start resecting nodes.
I personally have had my lung x-rays mis-read several times...i have an old scar which has been diagnosed as pneumonia, and lung cancer....its an old scar. Second opinions by a top radiologist confirmed. I've had a CT scan just recently that said i had gallstones....second opinion..NOPE i don't...doctor reading it wasn't familiar with the Indiana Pouch.
I always have every scan read at least twice...once and sometimes twice locally and then by my team at The Cleveland Clinic.
I wish i had a magic answer..and i know other people do not have the kind of insurance i have where i can get about as many opinions as i want and can go anywhere to get them. I see so many fall through the insurance crack!
Pat