cystectomy with no chemo??

mleigh, I don't know if doing a scan when the pain started would have showed very much. When my husband complained of pain in his chest after lung surgery they did do a scan. We found out in May that they missed seeing the lesion in the January scan. It was small I will agree but time has been lost. Once it is know that the cancer metastasized the focus changes. We keep being told it is not curable just treatable. Now we have heard from some people that they have no evidence of disease after treatment for many years. I don't know if that is true for cancer that has gone into the bone.
I guess we will find out. Julie

Ginger,

To answer your questions, his surgery was in November 2007. He had a follow up visit with the Dr in December and they did a scan then and saw no problems. His doctor recommended follow up in 6 mos which was scheduled for May. The pain in his hip that was the precursor to discovering the mets started in late March/early April. To add insult to injury he even called the surgeon's office when the pain started, they asked him to describe his symptoms, and then told him it didn't sound like anything to be concerned about and they would see him in May. One thing I realiza in retrospect is that it probably would have been better to have been a bit more proactive, i.e. insist on a scan when the pain started, not just go along with what the doctors said. But my dad is young (50), so I'm really just a bystander to this process. He and my mom are making the decisions and I'm sure they felt confident in trusting the doctors at one of the best cancer centers in the country. Was that a mistake? I don't know. I have learned there are no easy answers in this process.

Hope your husband continues to do well. It is so comforting to have the people on this forum to consult with and talk to.

MLeigh,
Sorry to hear about your dad, I often wonder how long the ones with metastisis waited or if they went sooner what would change., and how much time would have made it different diagnosis wise..my husband had stage 3T-2, r/c Sept. 14th 2007, no cancer in sight for now...he also has had no chemo no radiation, our surgeon said its not necessary,,one thing I would like to ask is in his follow ups he did have scans every 6 months right, or 3 months? It should have shown up there,,if I were sending a care package I would send the following,,,maybe a calendar , pocket size for writing down times of appt.s, a picture of you and them together,,a bag of hard candy or mints for there room..a large size pack of handi wipes, (can't have enough of those around) a deck of cards or a scrabble game,,and sun screen in case they get outside..that would be my list, I am sure others will add to it..I will keep you ALL in my prayers,hope they can keep dad in comfort and kill the nasty cancer bug so he can live alot longer,,,Ginger

Susan,

Thanks so much for the support. Funny coincidence that y'all are in the same place (ok so I'm obviously from the south if I'm saying "y'all", lol) He and my mom actually got to come home for a few days before they will head back to Houston next week. He is responding pretty well it seems, in as much that he is not having any major side effects and his pain has decresed significantly. I hope things are going well for you. This is such a difficult journey. You must be one "tough cookie".

Wishing you all the best...

mLeigh -- It it the hotel right on the campus, Rotary House? If so, I'm there, too.
Just for a couple of days more (til 6-12). In any case, if it is that hotel, there are nice public spaces and lounge chairs out back and lots of patients and caregivers about. But, in my experience, the chairs in the rooms are not comfortable. (Couches in small suites ok) I was given a nice mushroom chair that allows me to sit up when I'd otherwise be in bed. Also warm absorbant hats/head covers are great if hair is being lost. A roll of quarters for the coin laundry
(the machine is always out of change). Small laundry soap ,too. Favorite magazines or newspapers. Postage stamps, if needed.That facilitates quick mailing. Maybe a personal music/sports listening devise, if that's relevant.

Some of these are Rotary House specific, some more general.

In support -- Susan (who has her bladder and her mets and is getting v. aggresssive
chemo at MD Anderson which is not my first major Center. I was in Boston last spring, Home in MS July-May then to Houston )

Hi mLeigh,

So sorry to hear about your dad, Hope things are going ok with the chemo and your dad is holding up ok?

My dad was diagnosed with T2 G3 last month and he has been recommmended chemo before surgery even though the doc has told us it looks like the lymph nodes are clean (from his scans i think)?? I dont know, it must be down to the doctors choice/opinion, our doc said he has better results with pre surgery chemo and that people should try get on with their lives after surgery so get chemo out of the way! It's very confusing though that there isn't a set protocol and people are offered differnt treatment depending what doc they see?? Its so hard, we're worried that all this waiting i.e: 2nd opinion and now the oncologist etc is delaying getting the cancer out so hard to know which option is for the best!

You and your family are in my thoughts x