The struggle has been in vain- it's spread- update on Bob

Good job Lorrie, whatever it takes to get their attention. Isn't it a shame it is that way. Good luck tomorrow on the tests.. maybe things will turn out to be not so bad, I am the eternal optomist...oh and from caregiver to caregiver, a glass of wine does wonders. Ginger

Lorrie,

Great! Go get them!!!Great Job!

Hello everyone- It's really all starting to sink in now. I have been on the phone all day it seems getting different appointments set up. Last week when we received the devastating news about the lungs, they left us hanging with no direction. There have been so many Dr.'s involved in Bob's case but I don't think they talk to each other or read each others reports. Anyhow, when I got up this morning I decided to play my 'helpless female' card. I put on my softest, teariest voice & called the urologist's office where this all started. Well it worked. before I knew it I was getting calls from practically every Dr. I've ever heard of. We now have an appt. for CT scans tomorrow A.M., full bone scan next Mon., an appt. with an oncologist at a Cancer Centre on Tues., & an appt. with the Urologist on Wed. Our kids are going to attend a couple of these appts. with us so maybe between us all we can retain/digest some of what we will be told. I'll keep you all posted. Wish us luck- Best Regards, Lorrie

Lorrie,
I can only imagine that your husband is devastated by this news, after getting over what has been delivered as a prognosis of sorts gather your strength, make his days as pleasant as you can. He will be in for tests etc. so it is important to give him the most positive outlook you can. Atttitude means alot, go at it like your in the fight of your life, for him. And who knows it may turn out to be something he can live with. Positive. positive thinking, make it work. At this point thats what you can do for him!!!! Ginger

Andrea and Lorrie,

I'm so sorry to read about this awful development, coming on top of the disappointing results from the neobladder surgery. So...they biopsied the lung nodules, then? I assume so because Andrea said the histology was TCC.

I don't think it's a case of malpractice...although it may well seem so. It's a sign that our tools are not quite good enough to find small mets yet. It had been very common all these years to withhold chemo unless node mets were found (or other spread). Perhaps chemo before surgery would have been better...this approach is getting more and more press and is on the way to being a guideline but not yet standard. I think that up till recently the chemo used was so aggressive that experts felt it was best to use it sparingly. But with the newer combination of Gemzar and cisplatin they have found a combo that works without killing the patient along with the cancer.

I hope that the oncologists and the new appointment brings some more hopeful news. Remember that your father/husband is more than a cancer patient, more than a sick person but a person facing the challenge of his life.

BTW, 3 mm growth within a few months is not so bad, maybe it's not fast growing.

Lorrie, I can certainly empathise with your urge to run away. But you know you can't. Please do whatever it takes to stay sane at this time, if that means tranquilizers, anti-anxiety meds, anti-depressants or a stiff drink at night- do it.

If it's possible to get support for yourselves, please look into it. It's a very hard situation.

I send my best wishes to the family. And please feel free to vent.
Wendy

I am so sorry to hear of this familiar story. The exact thing happened to my dad. Had his bladder removed in September,2004. Doctors said cancer confined to his bladder - no cancer anywhere else. Biopsies, CTscans and other test showed no signs of cancer. Seven long months (two peristomal hernia surgeries and countless other problems) three new tumors were found - rectal,pelvic and abdominal. Four months later my wonderful dad died.

If we had known - which no one ever does - that the cancer was that aggressive and would spread anyway - we would have tried another approach rather than RC. However, without the RC we may not have had eleven more months to spend with him. The only explanation I can come up with is that God just needed another angel. Otherwise, I can't live with the guilt that I should have done more.

I know how you are feeling and what you are going through and my heart and prayers go out to you. Every case is different, so explore your options carefully and quickly.

Thinking of you,
Debi