Home › Forums › All Categories › Metastatic Bladder Cancer › Looking for Answers
-
Looking for Answers
Posted by Robin on May 31, 2008 at 7:45 amThis is my first post…and here is my story:
My father was diagnosed with bladder cancer in June of 2006. In July of that year, he had his bladder removed and a neobladder was created at the Univ. of Chicago. After recovering from surgery, he underwent chemotherapy. In August of 2007, he was told, “Everything looks great. You’ve done remarkably well..miraculously well. Go out and live a great life!” Two weeks later, he went to a local doctor because he was having a terrible back ache. Following an MRI and then a bone scan, it was discovered that the bladder cancer had metastasized to his bones. We couldn’t believe it!!
He went through chemotherapy again (had a rougher time that time…hospitalized 5 times for transfusions) and then had radiation. He finished up radiation a few months ago. His oncologist wanted to give him a couple of months to try to build up his energy and then check him again. Before the two months were up, we had him back in the hospital. To get to the point…three weeks ago (following MRIs, bone scan, etc.) we were told that the cancer is now in his bones, liver, brain, etc. I read here tonight that metastasizing to the brain is rare…but that is what we were told (“There are a number of substantial tumors in the brain”) The oncologist at U of C said a textbook estimate would be that he would have six months to live, but he didn’t think he would have that long. (By the way, his oncologist is the most caring physician I have ever met)
Anyway…they are considering either radiating at least one of the brain tumors or using a gamma knife procedure. They say it will help with pain and/or help to prevent blindness, paralysis, etc. This treatment is supposed to start next week. We are in Indiana, about an hour from Chicago, and he would have the treatment here.
In the meantime, my father is growing increasingly weak. He has lost 10 more pounds in the past week. His appetite is slowing down. He often says it hurts to swallow. He has no energy at all. My mother, who is 73, is his caregiver. They just started having a visiting nurse come to the house yesterday (someone will come 3x/week).
I visit daily and talk by phone about 5-6 times a day. Tonight my mom and I had a long talk. We wonder if this extreme weakness is just temporary…or is just part of the downward spiral? We wonder what to expect in the way of condition as his death approaches. Maybe there is not any one answer. Maybe it is different for everyone. I imagine that’s true. I just thought this might be a good place to get some feedback.
As all of you who have dealt with this disease know, this is an extremely trying thing to go through and I just don’t know where else to ask.
Robinmssmr replied 16 years, 8 months ago 5 Members · 15 Replies -
15 Replies
-
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…
from that website they also have a link to a brain mets website:
http://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
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
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.
RobinHey, 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) — SusanGuestJune 1, 2008 at 4:13 amPat,
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..GuestJune 1, 2008 at 4:03 amUnfortunately 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….
http://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!
PatGuestJune 1, 2008 at 3:27 amRobin,
As you have read, Lorries husband experienced metastisis soon after having his bladder out.. These cases are very sad, like your fathers. It just seems like it should have been caught as it had progressed so quickly and in so many places. Thats why I wonder if it came from elsewhere. What your concern now is what to do for dad, and for support in that scenario. I believe you will find the way thru this by how he does in the next few weeks, the weakness as you said, may be from it going to far, the nurse is the first step, hospice the second. First you have to see if he gets strong enough to do further treatment, that will give you an idea how far to go…take care, GingerLorrie,
I totally agree that someone dropped the ball in your Bob’s case…You and Bob were actually one of the cases Ginger and I were talking about a few months ago. I think that Robin’s fathers case. Her father was cancer free for over a year…then the spread was discovered. When the Pre-surgery test are done…Surgery Performed, and then within a short time frame…they discover a spread…that is TOTALLY UNACCEPTABLE!!! You are so right to feel bitter…Bob should have never been approved for the surgery…they dropped the ball BIG time in your husbands case…This is one of the reasons why I advocate for anyone facing R/C gets a second opinion, and demand every test possible to check for spread PRIOR to the surgery…Even if you have a different lab look at the tests…
I am so sorry that you and Bob are going through this…Is it possible Lorrie for them to change Bob from the Neo to an outside bag at this point? At least he wouldn’t have to wear depends…etc…I think about you and your family so often and I am angry right along with you that this has happened…too many times here. Aimeth’s husband, Claire, Bens-Paula, Marcus…so many have undergone this radical surgery just to find that the cancer was metastatic afterwards…Something needs to be done so that others don’t have to go through this!!!
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
If I can just jump in here with my 2 cents worth. Bob had his surgery Oct.2/07. Pathology reports said he was clear- no further treatment needed. When he was readmitted with 1 of his infections,( within days of the surgery) they did a CT scan. Surprise!!!! There were a couple of nodules in his lung. Before surgery they supposedly checked him out thoroughly. He had CT scan, bone scan etc. “We wouldn’t be doing the Cadillac of surgeries if we weren’t positive that he would be cancer free”- that is a direct quote from the surgeon! Well, if you have been following my posts, you know that all is not well, Bob is dying. he is enduring Chemo to try & buy some time- it’s Palliative only. Best regards, Lorrie- Do I sound bitter?
In alot of cases, my husbands included…Radiation is Pallative care…it is used for pain relief…Bob Clara’s husband gets this as well…Angelo has had 11 treatments to his pelvic/sacrum/hip area…and he feels so much better. It is a very low dose over an extended period of time… Angelo goes for a bone scan next week as well as blood work…if he gets good saturation to the bone with the contrast…and his bloodwork is good he will get the lone awaited Quadramet shot (for further pain relief) sometime the following week…
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
GuestMay 31, 2008 at 11:09 pmRobin and Karen,
The time frame is what concerns me. He was tested and 2 weeks later had a back ache with led to all the discovery. One day he had the all clear, 2 weeks later he was not. Robin, as you can see we go over these issues with a fine tooth comb. I know its never a given that the cancer is gone forever, but it seems he had his follow up and it was missed. I always wonder if it comes from elswhere, in any case its a sad note we are meeting on, I wished we had met earlier. Was there a second opinion in all of this,?? It makes one think you may need a second opinion on follow ups in this case.. The nurse coming 3 X a week is the best thing you can do for your mom, I think the question is how much to put your dad thru now, radiation etc. quality of life is the issue… My prayers are with you,,, GingerGuestMay 31, 2008 at 9:37 pmRobin I am very sorry to hear about your Dad it just sounds unreal that he was ok and 2 months later the cancer had spread after the chemo.. Did your Dad get a bone scan prior to the surgery or any other tests. Joe ;)
Ginger,
If you look at the time frame 2006 was the surgery…the mets were found the following year…it is now 2008. There is always a risk that it will spread…but in Robins fathers case he got the all clear a couple of times prior to the discovery…This is why follow up appointments are so important…You don’t get the “All CLear” until you are cancer free for 5 yrs. His case is different in that after surgery and chemo he got the all clear…the others that you and I were talking about were metastatic immediately after surgery…
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
GuestMay 31, 2008 at 8:02 pmRobin,
This is a situation that makes one wonder. They test for metastisis before surgery with pet scans, chest , pelvis, etc. My husband had his bladder removed Sept. 14, 2007. His paths and everything were clear for cancer after surgery. Did your dad have any lymph nodes with cancer in his path report?? You were at a major facility University of Chicago, generally if metastisis is indicated BEFORE surgery they don’t remove the bladder. I am not pointing a finger at any one but it does make one wonder what happened. Protocol at the Cleveland Clinic is tests every 6 months after surgery for any metastisis.
I am not knowledgeable enough to guide you with treatment or pain issues but I do have compassion for you and your family. This has to be a shock to say the least. I am sorry for your situation and will keep you in my prayers.. GingerRobin,
First, I know how exhausting this is for all involved…be sure that you and your mother take breaks and naps…kind of like having a new baby in that you should sleep when they sleep.
I am so sorry that your family is going through this…With this cancer it is so cruel…It is such a roller coaster….there have been days that I am sure that my husband can’t possibly make it much longer…then he rallies again…I would definitely suggest the radiation…it is such a great pain reliever. Also remember that the chemo is hard to recover from even when someone is not terminal…also the narcotics make them even more tired…It is hard to figure out what it the actual cancer and what is fatigue from the treatments/pain meds…
For the weight issues:
Get some nutritional shakes that have a ridiculous amount of calories…they have them at GNC for weight gain…they have a lot more calories that ensure etc…you can add fruit or ice cream to these to make them more palatable. Don’t offer him large amounts of food…small portions several times a day…Don’t ask him if he is hungry…his answer will always be “No”. just put small snacks at his bedside, or bring something in the room and act like it is for you…ask him if he wants a bite, and 9 out of 10 times he will try it…Very bland foods work best…and protein is very important for energy…yogurt, ice cream. cheese, etc…Turkey breast sandwich… only offer a half of sandwich…when the plate is loaded it is too overwhelming to look at…keep in mind that the narcotics are probably giving him constipation…this will make him even less hungry…keep a canister of pitted prunes by the bed for him to munch on, and check with the Dr about senna laxatives (very natural and they don’t cause cramping etc…Also, ask your fathers Dr if he would benefit from a drug called quadramet…It is used for Bone mets and is an IV Radioactive agent that attaches to the bone and can relieve pain for months…
My husband has had very positive responses from radiation…
Is your father being treated at a Major Cancer Center? They work well in the fact that all of the Dr’s are on one team and can come up with a plan together instead of Primary Dr., Oncologist, Urologist, Radiologist…all in different offices…With this approach they all work together…
I wish I had an answer for you about a time frame for his life…there is just no easy answer there. If they are still offering treatments of some kind I tend to take that as a good sign…When they tell you there is nothing else we can do for you, and to call Hospice…you are probably getting closer to the end…but even then who knows…
Wishing you well,
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Sign In to reply.
All services of the American Bladder Cancer Society are free of charge to everyone.
Information on this site is not intended as medical advice but rather to help you formulate questions for your medical team. If you are having a true medical emergency, please seek immediate attention at a qualified care facility or from a medical professional.
ABLCS is a 501(c)(3) non-profit organization
© American Bladder Cancer Society, Inc.