-
Just Starting the journey
Hello to all
My name is Doug . Im 64 ,widowed for almost 9 years lost my wife to ovarian cancer after a 3 year battle ,I was her caregiver untill the last 5 days when she went into a Hospice facility. I live alone with my trusty Chihuahua mix named Dot ,who will soon be 10 and has her own health issues but is happy and pain free and my constant companion. She saved my life when I lost my wife and I am now doing the same for her. I live in a small central Illinois town that thankfully has a brand new state of the art Hospital.
Short version of my adventure so far. Several months ago I was having frequent urination with slight discomfort ,came and went .Then I finialy noticed some pink in it and saw a Uroligist,we schedualed a cystoscopy under sedation as I was sure it would end up more than a quick peek inside. I awoke in the hospital with a Folley cath, was ther 2 days and sent home with cath antiboitics and pain meds,again alone pretty good challenge.The cath was remover 4 days latter. Quik diagnosis was he found a cancer tumor on the top of the bladder,and proceded to scrape off all he could .Since then have had CT scans and complete bone scan,it was great fun as I had a sever reaction to the tracer and rushed to the ER barely consious and thinking it was all over.He said at first a radical cystectomy with externial bag. I go to see hime in a few days and all the test results and labs should be in hand then,and should know way more.Ive also been troubled with reaccuring Malignat Melanomas,he is concerned they may have matastisised . So for the moment I continue caring for myself and Dot . I will post more info after the Doc visit./consult the 5 th of Aug. -
13 Replies
-
Hello Gray & Dot
If you don’t mind I’ll call you “Gray” because we have another Doug. I’m older than you and confuse easily! lolDon’t worry about what diversion you need to get. There are experienced folks here who have knowledge of all of them and will advise you as needed. Mine is external.
It is important to understand what your doc is talking about. He might have flyers or brochures which he can mark areas for your attention. It is your body so it’s important that you understand what’s going on. Keep asking questions. Then if you’re still foggy about something more we all have experience that can be helpful. I found it helpful to take notes for doc visits.
OK, buddy, deep breath. You are among friends here. Everything will be all right.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
Doug,
Best wishes as you continue on this journey and also with your friend who has had the bypass surgery. Dot’s story is really a miracle.
Anita
Anita
Forum Moderator
Caregiver
Hi, Doug, Love Pat’s suggestion of having Dot stay in the peds ward while you are in the hospital. Bet the children would love her as well. But, maybe you have a good friend who might keep her for you? I know how stressful all of this is and having the concerns for Dot makes it worse. We were fortunate when Jim had his RC/IC that our daughter who lives 8 hrs from us was able to meet us halfway and keep Lance the Wonder Whippet for us until Jim was home a day from the hospital. It did relieve us of a lot of worries for him. He too is very bonded to us and it does concern we who are dog lovers.
As far as what help you may need when you get home. Your surgeon should set you up with the home health caregiver of the level you would need. Many say they didn’t need help but since you live alone it is important to have the help you need. Between the hospital social worker (they are the ones who usually assess needs of patients returning home) and the doctor you should be okay. We are all eagerly awaiting what you find out today. And know that we are here for you.
Give Dot a pat for me!
Hi Gray….hmmm this paper which is difficult to read but is a really good reason to get a second opinion from a top bladder cancer urologist and you do have one at the U of Chicago..Dr. Gary Steinberg….here’s the paper
http://www.ncbi.nlm.nih.gov/pubmed/11996105
you really need exceptional pathologists to deal with this.
Dr. Steinbergs contact sheet
http://www.uchospitals.edu/physicians/gary-steinberg.html
If you’re closer to Indiana one of the top bladder cancer places is at the U of Indiana Simon Cancer Center. They are tops.
Dr. Koch quite the innovator.
http://www.iupui.edu/~urology/koch.html
Wishing you the best and maybe Dot can play in the pediatric ward during your surgery?
pat
P.S. you’ll have to copy and paste the complet URL on Dr. Koch as it did not take……….pat
Thanks for the kind word’s about Dot . She saved my life when I lost my wife to ovarian cancer .About a year ago she got leptosurosis (spelling) we still dont know how as she is with me or in my fenced yard,everyone gave up on her surviving even the University of Illinois Vet school.I brought her home from there with 2 prednison pilss and was told nuthin more could be done . My avitar picture is the day before she was to be put down,the next morning I got her to eat some boiled chicken from my hand ,its now a year latter and she is still with me ,not as strong as she once was,cant climb stairs,chase squirls,and generaly get into mischeif,but happy ,pain free,and still sleeping next to me each nite.My vet says if she hadnt had me she would have been gone a long time ago. Seems only fair she saved me and I could do no less than same for her.She is one of my main concerns ,I was at the vets yesterday and asked him if/ when I get the surgery did he think she would survive even in his kennel and care , he looked down and replied no,she wouldnt without me. She gets meds twice a day ,and my care and attention always and amaze’s everyone how well she does. In all honesty Im more concerned for her than myself. I go to the Doc Fri to finialy see what all the results are and options .I just dont know what Im going to do,as I said in previous posts I live alone with Dot and havent a clue what kind of help Im going to need at first or how long before Im able to do much for myself.So untill Fri Im just doing what I can and lovin my little Dog she will be ten years old the 11th of this month….
Doug,
That’s wonderful that you have a very helpful friend. Is there any chance that he might go to the doctor with you to take notes on what the doctor says? It is hard to catch everything the docs say sometimes.
Miss Dot is very cute!
Anita
Anita
Forum Moderator
Caregiver
Hi, Doug, I’m just lovin’ Miss Dot, too cute for words! We have Lance the wonder whippet at our house and they are indeed such amazing companions. Lance is currently lounging under my desk by my feet. Considering it seems like a 1000 degrees outside here in SW FLA USA it is a dual edged sword! :laugh: But one I will happily take. When I figure out how to put a photo on my profile I think I will put lance the wonder whippets there. He is a mighty handsome fellow. Just wanted to let you know we are here and will continue to be.
Love the picture of your little friend!! They are such a comfort and companion.
The problem with bladder cancer treatment is that in spite of being the 5th most common cancer, most urologists are experts in prostate cancer, not bladder cancer. There was a news feature on CBS this week about the frightening statistics on the treatment of bladder cancer. Go to the CBS news website and you can view the presentation.
Another complication is your melanoma. While it is extremely uncommon, melanoma CAN appear in the bladder. It appears that your urologist is aware of this possibility, and he should be able to clear this one up with the pathology results he will have when you see him.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Grey,
I switched to Firefox (free browser) and it automatically highlights spelling errors as you type. Comes in handy for me.
Ask anything and everything. Hopefully, now that you’ve found us, you won’t have to “freak out”. It’s great that you have that local friend. That’s one more than some people have.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thanks to all so far for the responses. It is pretty hard to absorb all that is going on right now a lot to figure out in a short time . I have a very few “Friends ” here localy one in particular has been my savior and has been by my side from day one ,taken me to the hospital ,run errands and has just been the guy that has gone way beyond what I ever expected of him,and all he’s says when I thank him is Im your friend and Im in it with you . Doesnt get much better than that.Cant imagine how I would get by without him. I have a brother in Chicago that will be willing to do whatever,but at the moment Im plugging along ok ,and he works full time so trying to let him do his stuff till absolutly needed.I will hopefully ask the right questions when I see the Doc Fri. He is highly thought of but I never thought to ask his experiance . I will ask about a second opinion,dont have a clue where to go for that,maybe a trip to Chicago might be in order.I am concerned about the Melanoma possibly having spread as Im sure that will just add to the whole process. Amazingly Im not to freaked out yet as we dont realy know the extint of what all is involved. Im realy glad I found this place as Im sure I will have a million questions,again I will be posting Probably Fri afternoon with new info. Oh yeah is there a spell check option,hate to look silly because of poor spelling .
Doug,
Sorry to hear about your situation but glad you found us.
First, the stage and grade found when you had the surgery is important. Different treatments depending on that. Sounds likely that it was found to be muscle invasive (T2) or higher if the doctor is already saying RC is in order.
As Sara Anne said already, be careful with a recommendation of external bag (ileal conduit). Not that there is anything wrong with that urinary diversion but it may not be the only choice available to you.
Now that you have been diagnosed, a 2nd opinion from a doctor at a major bladder cancer hospital is in order. The frequency that the surgeon does cystoprostatectomies and the particular diversion you want is of critical importance. You want someone who does 50 or more a year. A hundred a year is even better.
Metastasized melanoma may be a much bigger problem right now if that is the case. Recurring is one thing but once that gets metastatic, it not at all a good thing. As far as I know, urologists are not the best doctors for dealing with that. And the doctors who are the best at dealing with that are likewise not the best ones to be treating your bladder cancer. You have two paths to go down and you really need to have a specialist of each.
Best of luck!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Whew! You have been through a lot lately. Glad that you found our site and do hope that it will be helpful for you.
Now is the time to take a deep breath and take some time to think this all through. You have had to absorb a lot in the past few weeks. This might be a good time to seek a second opinion on your diagnosis and treatment. Did the uro say why he recommended an external bag? This is the simplest, and is sometimes the only one that doctors with limited experience attempt. At your age, and being male, you might do very well with the neobladder. And whichever diversion you might be considering, you want to be at a hospital, and with a surgeon, who does MANY MANY of these a year….a real expert. You wouldn’t take your fancy sports car to the corner service station for a complicated tune-up, nor should you do something similar with your life when you have the option to check out all the opportunities available.
Is it possible for you to seek a second opinion at the University of Chicago, for example? The BEST outcome of a good second opinion is that the treatment and recommendations of your local uro are “right on.” The second BEST outcome is that, should there be better options, they will be made available to you. Your current doctor should welcome your intentions to obtain a second opinion…my uro has told me that should it come to a recommendation for bladder removal (it hasn’t) he would INSIST on it.
This is the rest of your life you are planning for, so take a few days to be sure you are getting the very best.
Wishing you lots of luck
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Wow, Grey, you sound as if you have been through a lot. You have come to the right place for information, support etc. I am sorry for the loss of your wife. I know that had to be so difficult and now you have what I refer to as the b**tard cancer BC. Grrrr nasty thing! I will check back after the 5th to see what your doctor has to say. Can tell you that there is indeed life after cystectomy as many will tell you here. My husband is the person in my life who has had the BC not me. But, as you are all too aware, when your spouse has a cancer you also feel it. Just wanted to let you know we are here for you and let us know what the doctor has to say about your BC. Also, if possible maybe get a 2nd opinion if needed or if you have any doubts about what is found by the local urologist. This cancer does require expertise that maybe others may not. Meanwhile, pet Dot for me.
Take care!
Sign In to reply.
