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Husband w/BC

12 years 7 months ago #510 by rentanag
Deb,

I can only imagine what it must be like to go through this at such a young age, especially with your very young children.  Perhaps you've already contacted your local American Cancer Society, but if you haven't it's possibile they could help you with information related to dealing with your very specific situation.  Your husbands doctor could refer the two of you or maybe even just one of you (I write that because quite often men don't want to deal with this issue) to a therapist who deals with cancer patients and their families.  The ACS also can tell you about support groups that may be available in your area that could help you with all the stress you're feeling, as stress is a very common issue with patients and family members.  
This is also all very new to the two of you and it takes time to gather information about this very frightening disease.  If you live in a large city (or near one) it's possible you may be near a COMPREHENSIVE CANCER CENTER, and quite often these cancer centers have a CANCER RESOURCE LIBRARY.  These libraries have information on hand concerning all different types of cancers, and additionally they have books that can be checked out.  Some written by survivors on specific cancers and many others by a variety of authors on many subjects related to cancers.  Where I live in Birmingham Alabama there is a CRL and I've found a great deal of help with in the four walls of this library.  In addition to having materials I can take home that are mine to keep and are also free, they have the books I mentioned previousely, and they also have had many different programs on key information that cancer patients and their families need to know.  It is possible for you to access their web site and email the librarian, and she can send you information regarding your husbands cancer and other issues related to dealing with it as well.
This is how to access the CRL and email Ty.  In your search engine type in the following
                            UAB Health System
This should bring up choices related to the University of Alabama at Birmingham Health System, click on the best choice and when the window opens to their web site scroll down and toward the bottom on the right side of the page you will see where it has a link for
                            Comprehensive Cancer Center
click on that link and the next window that opens you will find a section that mentions CANCER INFORMATION, and under that title there is a link for the Cancer Resource Library.  When you click there and it opens to their page you will be able to get some information right then and there, but you can also contact Ty by email with specific requests and she will do her best to find you information relative to your specific cancer situation and other issues such as support, etc.  Once she gathers together the information she will send it to you in the mail, so be sure to include your mailing address.  Let me tell you again that this information she sends to you is free of charge, it's part of their program and is funded thru the Comprehensive Cancer Center.
I hope that what I've written will be of some help to you, and know that I will keep you all in my thoughts and prayers.  Just as I'm sure you're in the thoughts and prayers of many others you know as well.
God Bless.

Lou Graham

Ps.  The library is only open Monday thru Wednesday from 10 AM until 4 PM, so if you don't hear from her but you only emailed on say a wednesday afternoon it could be the following monday before you get any response.

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12 years 7 months ago #508 by twinsplus1
Well, all 30 slides came back as T1 so we feel very blessed. Hubby has decided to try a round of BCG with his treatments starting this Friday.

All this waiting is so stressful, is there a new tumor growing as we speak, is this going to work, will he have to have his bladder out soon?....sometimes it is almost to much to handle.

I would really like to hear from some other support people on how other people have handled this. We have 3 young girls, 6 years and twins who will be 4 this month. I know hubby is stressed and a little depressed and his temper is starting to become short, not just with me but sometimes the girls. I can handle it as I know it is not coming from his heart.

Thanks

Deb

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12 years 7 months ago #496 by anne06
I would love to hear from anyone who has had stage IV bladder cancer. My husband will start round 3 of chemo GC on Monday and has been fighting enormous pain ever since his diagnosis on Feb 8th, which is managed fairly well with oral morphine, and a handful of other meds, which make him very drowsy etc. He has not had a normal day since January. We have 2 young children, and are self-employed, so it's very tough.
I would really like to hear any advice or anecdotes or recommendations.
-Anne

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12 years 7 months ago #495 by anne06
I would love to hear from anyone who has had stage IV bladder cancer. My husband will start round 3 of chemo GC on Monday and has been fighting enormous pain ever since his diagnosis on Feb 8th, which is managed fairly well with oral morphine, and a handful of other meds, which make him very drowsy etc. He has not had a normal day since January. We have 2 young children, and are self-employed, so it's very tough.
I would really like to hear any advice or anecdotes or recommendations.
-Anne

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12 years 7 months ago #486 by Teena
Hi Deb,

I know exactly what you and your husband are going through.  My husband was diagnosed about a year ago with bladder cancer.  After many tests, scans, etc etc it was an agressive cancer which meant he had to lose his bladder.  Luckily it had not got anywhere else and was just contained in the bladder.   Its been about 8 months since the operation.  He is back to work and leading a normal life - well as best we can.  Prognosis is good, but the C word is always in the back of our minds.  He has been doing monthly check ups and so far so good.  In July he goes for his first annual check up and i think that do a kidney and body scan - not sure exactly.    

So life does go on.  I can say Last year was not the best year of our life but John is still here and life is ok at the moment.

I wish you both the very best and keep positive.

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12 years 7 months ago #470 by twinsplus1
Hi all,

My name is Deb and my husband (35yrs) was diagnosed with BC on March 17. He went in for what he thought was some urinary/kidney infection and came out with an appointment for an IVP 2 days later. Very scary when the test people and you the film and tell you your Dr. wants to see you in a couple of hours.

Well, the Dr. did a quick peek and advised that it was about the size of his fist. Dr was very surprised as hubby is so young. Surgery was scheduled for April 5 and they took it out and it was the size of a baseball! :o I was put into a little shock when the Dr advised that he immediately ordered a CT Scan (not something that we thought would be done until after the path report).

Thankfully, the CT came back clean with no signs of lymph node enlargement. Long wait for that path report. Came back as a T1 S1 G2-80% G3/4-20% TCC *hope I got all that right. Our Dr. had 5 pathologists look at this and none of them were willing to bet their life or their families life that this was a true T1.

So another procedure was scheduled for April 19. The Dr found a couple of smaller TAs and knocked them off. He advised us of our options if this came back at T1 (surgery or BCG) the decision would be ours.

Well, hubby got his 2nd cath out today and the pathologists are only through about 16 of the 30 slides and so far they are saying it is a T1. Surprised, as we thought it was going to be a sure T2a and we would be scheduling surgery. But, we are waiting for a couple of more days for the final results.

We ar EXTREMELY happy with our Dr., but are considering having the slides looked at by another path lab for a 2nd opinion. There is a cancer hospital in our area, but we are not treating there, as we feel, as well as other Dr.'s feel we have the best.

Thank you all for all the information that I have read for the last month. It has been a lot to digest.

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