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Hello I am new here…
Hello
I’ve been lurking here since I was diagnosed 1/29/07 with invasive bladder cancer. The urologist did the tur thing and told me I would be good to go with some BCG treatments. I felt relieved until the path came back high grade and invasive into the muscularis propria. I called the pathologist to find out the stage – was told it was stage T2 but there was no clean margin, felt it would be staged higher if more material. The more I have read on here and other reputable sites, the more unsettled I became. I opted to get a 2nd opinion at the U of Wis Madison. Tomarrow I am having surgery for more biopsies – to see if bladder neck is ok, and get clean margins. Then hopefully it is onto a neobladder rather than an ostomy.I also have suspected lymphovascular invasion so the nodes will go when the neobladder gets done. 2 weeks and my life is crazy with this flippin’ word – cancer. What a shock.
I was just married in December 06 , I am a 42 yo female. I feel so much but feel so numb as well. My heart goes out to all of you who have stared this thing down and support others thru it. I have been helped and I just want to say thenk you….you are in my prayers, sorry to meet you all here
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74 Replies
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Holly,
All the nodes were clear ;)Good for you!!!!! Take it one day at a time and everything will be o.k. So glad you are doing so well.
Blessings….Jean -
Hi Holly
Great to hear from you and that your doing well.The main thing is all the nodes were clear
from what I was told.Take care and concentrate on getting well let your specialists decide the best way forward.
Lots of Love Claire x -
It’s good to hear from you, Holly. Get better soon.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Holly…so glad you are well enough to hit the computer…i think it took me a month before i could straighten up enough to get to my computer!! It sounds like you’re doing very well and i’m so glad the nodes were negative. May you have continued good health…..pat
I was told before my RC that I was a T2 possible T3. After my surgery(5-25-07) my pathology reports came back T4aNO Stage 3, which means the tumor had gone through the bladder wall and into my ueterus. They did a RC and a total hysterectomy with all margins clear, including my lymph nodes. I had chemo before surgery to shrink the tumor and to kill any Ca cells if it had gone through the wall. The chemo did shrink the tumor by half the size and made surgery a lot easier. I ended up with a neobladder and they feel they got it all. I just need to have MRI’s of my pelvis and abdomen every three months for 1 1/2 years then it goes to every 6 months for 1 1/2 years. They do a chest x-ray sometimes too. Then every year I think for 2 years.
When they told me my tumor had gone through the wall I thought this doesn’t sound too good but, it could of been worse. My lymph nodes were clean like yours and all margins were clean. I don’t know if you had chemo pre-op but, if you didn’t they might want to give you some post-op as a preventative type of thing. I guess it really depends on your oncologist. Just think you have the worst part behind you now. Life does get back to normal it just takes some time. If you have any other questions please feel free to contact me.
DixieHey guys, I am at Mayo’s… I ended up with a neobladder last Tues AM. Been a bit hard on recovery – needed 2 units of blood. Tomarrow the stents and a jp drain come out. Pathology is back, it was restaged to 3a – 20 nodes – all negative, but I had another .9 cm tumor that made it thru the bladder wall. I am counting on you to advice in a timely fashion. I will be hopefully home in 2 days and better able to get more posted, TY for all the prayers, MZ
Off topic replies have been moved to [link=http://blcforum.com/cgi-bin/forum/YaBB.pl?num=1174066242]This Thread[/link]
Thanks Joe. I really, really appreciate that.
MZ, don’t forget that you have us all here and speaking for myself, I am praying for you, too.
Your BC friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Well best of luck MZ and have a safe journey. Ro & MZ I will keep both your sons in my prayers daily, I just wish we would just get out of Iraq. As you said hard enough having this on your mind and then have that worry on top my heart goes out to yous. God Bless, Joe
Hi all,
We are off to Rochester – the cold is massively improved and neobladder is on. Will likely be Tues or Wed before I post again…Love ya all, Holly
Holly,
You sound like you have it all together and you are ready to put up a fight and I know you will win.
I will be thinking of you on Tuesday and saying my prayers to St. Peregrine and I will ask him to especially watch over you on that day. I will also add your son to my prayer list. The power of prayer is amazing.
Many blessings…..Jean
MZ,
You are very brave and well armed. You will always have your support behind you here.
We have a couple of things in common. My sister had 2/3 of her bowel removed about 8 years ago because of gangrene from a blood clot. We came within an inch of losing her. The Doc’s took a long time to diagnose because I guess they weren’t looking for a gangrened intestine. Surgery became an option in the nick of time. My brother-in-law is a minister, and the entire ministerial community came together at the hospital and formed a wide, solid ring of prayer. The Doctors told us that he just didn’t know if she would make it. She did make it and she considers her life to be a miracle. And so do we.
My son has been recalled to Active Duty in the Army and will mobilize to Iraq sometime after June. It is very hard for me to talk about. Please know that I will be praying for you and for your son. I’ve got your back.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Dear Holly,
I was very moved to read that you have a desire to contribute somehow to this site/forum and to meet others in person. I’ve met a whole bunch of folks from WebCafe over the years, and made some really great friends. A few have come here to Amsterdam and others I’ve met in NJ when I visit my sister. And I have friendships going back to ’98, when my sister was dxed with blc.
After you are on the road to healing and out the other side of this surgery, you can certainly help by sharing your hard earned wisdom and experiences here on the forum.
In the meantime I will be saying a prayer for your son, as we all will.
Take good care,
WendyHi Patricia :)
The Dr has not yet revealed the details of treatment beyond the neobladder/ostomy procedure other than telling me after we will know the node status and have clear info on my removed bladder. He has assured me that we are proceeding to obtain “best survival rates” . He had another Dr in the appt last time wh owas reviewing the shoulder bone scans and he has not altered the scheduled surgery so I believe they feel it is ok.
The plan is to do the neobladder, however, the back up planis for the ostomy not the pouch. I am ok with that. AFter all, they removed 1 1/2 ft of intestines 20years ago when I had gangreen from a strangulating hernia. Plus we all know they have to be sure the usual is ok for the neobladder too.
As far as follow up care….Swedish American Hospitol here has a DR that is prepared to follow and manage adjuvant chemo here as specified by Mayos. They have a good cancer center for a local facility – just lacked the expertise to do the surgery needed. And the nurses here – theyare great. Iam not afraid on that count. My check ups for the first 2 years – I want those done at Mayos tho.
I asked about new neobladder procedures – and was not able to get any specifics. All I was told is that there are advances being made for treatments, just nothing available now.
All in all friends, I feel armed and as ready as I can be to beat this beast. The arsenal has been assembled and is about to be unleashed against this disease. It is a war I will win :)
Slightly off topic…..My son is 23, in the National Guards. He already served 18 monthes active in Iraq….He told me just yesterday that it is emminent he is going back for a second tour. He is airborne infantry special ops. Please put him inyour prayers. It will be a challenge getting thru the cancer by itself, but this on top of it…I only get 24 hours a day to pray ! I do appreciate the help !!
Well, today we are getting some things done around here while I am somewhat able as we go to Mayos on Monday morning! Love to all, MZHolly….just curious as different institutions do things differently. What is the doctors thought on chemo? What were his thoughts on the shoulder ( which could absolutely be benign) and the spot on the lung? I also had a spot on my lung but the big guys at the cancer centers all recognized it as an old scar….whilst the local yokels were spreading gloom and doom.
I’m so happy you’re content with your new doctors……while i did the Indiana Pouch instead of the neo-bladder…its still a long haul afterwards. I went home with at least 2 J-tubes and one other tube and i may have even forgotten a few!! See if the docs up at Mayo can recommend someone to do follow up care closer to you . You never know what might come up. Your social worker will see that a nurse visits you at least twice a week in the beginning. Its just nice to know where the docs are and the nurses are that deal with this once you’re home.
And do me a favor if you can….i read on their site that they are either experimenting or in trials with a bladder not done the traditional way of using the intestine. I’ve written them but to date no response.
My best you to you and i’ve no doubt you will be a success story………PatSign In to reply.
