Just Starting the journey

9 years 9 months ago #38719 by Grey
Just Starting the journey was created by Grey
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.

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9 years 9 months ago #38720 by jimswife
Replied by jimswife on topic Just Starting the journey
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!

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9 years 9 months ago #38721 by sara.anne
Replied by sara.anne on topic Just Starting the journey
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

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9 years 9 months ago #38724 by mmc
Replied by mmc on topic Just Starting the journey
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...

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9 years 9 months ago #38728 by Grey
Replied by Grey on topic Just Starting the journey
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 .
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9 years 9 months ago #38729 by mmc
Replied by mmc on topic Just Starting the journey
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...

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