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One Year Later

12 years 1 week ago #8678 by TheWifeAgain
Thanks Warren for the info
That is an interesting theory to pursue if there is no medical reasons found for his pain

Bubbles

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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12 years 1 week ago #8670 by wsilberstein


I am sure that he is no longer having any side effects since his last TURBT (4 weeks and 4 days ago). Something else is wrong and going on in his abdomen. He has a constant feeling of pressure in his pelvic area and it hurts in his lower abdomen when he sits.
He has never had any of these symptoms before. Any input?

Dear Bubbles,
I'm not sure if this is the answer, but check out the information on pelvic pain at http://www.pelvicpainhelp.com/ . My urologist suggested it to me as the cause of my pain with my urethral stricture. While he was wrong (my opinion since the pain went away when the blood in the urine went away), I could see how my response to the pain I was having aggravated the pain further. It's hard not to tighten pelvic muscles in response to pelvic pain... but if you do, it makes the symptoms worse.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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12 years 1 week ago #8657 by TheWifeAgain
Hi everyone
Since my last post it has been non stop visits back and forth to the urologist. BCG and interferon will not be starting this Friday as planned. Hubby has had severe burning during urination and abdominal pain and pressure and they finally booked a CT scan.
He has been getting up at least once an hour overnight for the last three weeks to 'go". During the day it is even worse. Needless to say it has been exhausting physically and mentally. Ditropan and pyridium didn't help at all. Nor did a miold sedative at bed time.
Three urine tests were negative for infection. Three bladder scans showed the bladder was not reatining urine and yet the symptoms continue.
I am sure that he is no longer having any side effects since his last TURBT (4 weeks and 4 days ago). Something else is wrong and going on in his abdomen. He has a constant feeling of pressure in his pelvic area and it hurts in his lower abdomen when he sits.
He has never had any of these symptoms before. Any input?

I am really nervous that the CT scan may see something new......

Thank you
Bubbles


Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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12 years 3 weeks ago #8247 by mznoregrets
Hi,

I live in northern Illinois miway between Chicago and Madison Wisc. - not a huge place, but the American cancer society was able to connect me with a mentor. Her name is Evie - she had bladder cancer apx 10 years ago and had the ileal conduit diversion and chemo. Even tho I had a different diversion and a slightly higher stage of bladder cancer, I found her to be extremely helpful as I made the journey towards recovery. Perhaps they can also connect you with someone who has been there , too. Best wishes and God Bless, Holly

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12 years 3 weeks ago #8246 by Zachary

Dan,

While I do agree that the decision is ultimately the patients, I also think that by being in a relationship, You often have to put the other person BEFORE yourself.


I'm not going to speak for Dan, but what I got from his post was that her husband is *not* going to put her desires ahead of his. He's going to do what he wants to do.

And no one can change that. No amount of pleading or logic can make an obstinate person change their mind. All she can do is what she has done--present the options in a clear and meaningful way. If he is going to ignore that, well, she either has to 1) back him up, 2) keep on him to change his mind (which doesn't sound like it's working), or 3) accept that he's choosing to go against her wishes for his own, perhaps illogical, reasons--and by accept I don't mean be happy about it, but resign herself and go with whatever the future holds.

None of those choices are pleasant, but he has his choice of treatments and she has her choice of how to respond. That's it. Unless she can get a court order, she can't make the decision for him.

I wish them both the best, and I hope that he eventually makes the choice that gives him the best chances for a good life. In that light, I don't miss my own bladder a bit.

Zach

Afterthought:

I do not envy your position right now, it is a desperate, helpless, and frustrating feeling being the spouse of a Cancer Patient.


That's why I felt a lot sorrier for my wife than I ever did for myself. I couldn't imagine dealing with the helpless and powerlessness she must have felt.

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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12 years 3 weeks ago #8243 by momof4
Dan,

While I do agree that the decision is ultimately the patients, I also think that by being in a relationship, You often have to put the other person BEFORE yourself. In a relationship spouses often confer with each other on spending more than a certain amount of money, no major purchases without consulting the other etc...This is the spouses life too. That is what a marriage is. Two lives becoming one. Well this is a much more important decision than buying a car, or a new fridge!!!

The Wife Again,

I really feel for you. I hope that everything works out with the path that he has chosen. I guess I just wish we were in the same position. My husband is dying from this disease, and we have small children yet at home. Our decisions have all been taken away from us, now we are dealing with Chemo, that can't cure the cancer but MAY give him alittle more time...

I agree with Dan that you should find a support group in your area, usually if you contact the social worker at the Cancer Center they will have the information you need, or The American Cancer Society. Unfortunately you will not find alot of support groups out there for this type of cancer. There are many for Breast, Colon, End stage Renal,etc...The subject matter would be very similar though and may work out fine for you. Maybe look for one that isn't Cancer Specific?>???

I do not envy your position right now, it is a desparate, helpless, and frustrating feeling being the spouse of a Cancer Patient. If only for the mood swings alone. If you would like to talk please feel free to private message me and I would be happy to give you my phone number.

You are in my thoughts,
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.

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