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Three Month Cysto - Never Clean

11 years 8 months ago - 11 years 8 months ago #22148 by TheWifeAgain
Thank you guys for the quick replies. We indeed live our lives in three month increments. Never having received good news at three months as it approaches it is always high stress and anxiety.
Yesterday was also the first time the doctor did a biopsy in the Cysto treatment room and it didn't go very smoothly. The second tumor they took a peice of starting bleeding more than expected and they had to go get the cauterizing machine and zap it to get it to stop. I am thinking he did an in office biopsy this time to make the move towards discussing RC if it's high grade? At all other 3 month reoccurences a TURB was shceduled and that was that.
We did seek second opinions in the past and probably will do so at this point also.
One thing I always worry about is the cancer going outside the bladder becasue of all the scar tissue. I remember at the first Cysto being amazed at the pretty pink image on the screen. Now it is just a mess in there. My fear is that the cancer will grow out of the bladder becasue the scar tissue will prevent it from growing into the bladder that it may work backwards and grow out of the bladder. Is this a genuine concern? Does that ever happen?
Some days this stupid bladder cancer concerns me every waking moment.

Thank you all again very much.

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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11 years 8 months ago #22147 by Webs
The only advice I can give is get a second opinion so that your choices are very clear to you before making a decision. If RC is the answer know that it is a tough road but not horrible. Sure the surgery is tough and it takes a while to recover, but then life gets back to normal. Sometimes the Mitomycin and BCG stories sound worse than anything I have had to deal with. I hope that everything goes well for you guys and will keep you in my thoughts.

Webs

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11 years 8 months ago #22145 by Cynthia
When I was originally dxed I was T2 G3 and my response over and above the (OH MY GOD) this may kill me was the fear of losing my bladder. I opted for a clinical trial in order to try to do bladder sparing. What followed was a year and a half of radiation, chemo, re Turb and BCG. Six months was the longest we could keep the TCC and CIS at bay the emotional and physical ups and downs almost brought me to my knees. The day came that my medical team told me it was the end of the road that the RC had to happen and I felt like I had failed. Now sitting on the other side of the fence it is clear to me that I had lost sight of what the enemy was; it was not losing my bladder it was the cancer. For some the blc happens and they do BCG or other treatment and it may reoccur or it may not but if it does more treatment keeps it at bay. But for some with high grade blc it is more aggressive and once it starts it never lets up until you stop it in its tracks with an RC. Never lose sight of this fact, no matter what our treatment paths are the bottom line is to keep the cancer from getting out of the box and our surviving.

Two and a half years find me leading a good and full life following RC it was not the worst thing that could have happened to me by a long shot. The emotional rollercoaster of constant reoccurrences is behind me thank goodness. I did all the things that we are advised to do I got a second and a third opinion. I chose a surgeon that did a high volume of the diversion I hoped to get and I chose a hospital that handles a high volume of RC patients.

I cannot advise you as to what treatment path you should chose once the pathology comes back this time. I can only advise you to seek the best treatment available and to never take your eyes off the true enemy.

Good luck and keep us updated.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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11 years 8 months ago #22142 by Lady Jane
Wife, All I can offer is a hug for support as I am not versed in this cancer enough to be of help.
Thinking of you and your husband.

Ta Grade 1
6 TURBS
15 BCG
dx Jan 07

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11 years 8 months ago #22140 by TheWifeAgain
I am going to try to sum up my husbands bladder cancer journey to this point as briefly as possible.
He was diagnosed in October 2006. Due to other medical problems and serious infections he was dealing with at the time bladder cancer was an accidental finding.
His initial TURBT pathology was T1 G3 and his tumor was 10CM. He did have a re-TURB to remove any residual tumor. At three months the Cysto revealed more tumors. Once again TURBT pathology revealed High Grade. During the early bladder cancer treatemtns he was plagued with MRSA infections (MRSA appeared before BC diagnosis) and DVT (deep vein throbosis in the leg that he had surgery on due to the MRSA) and also PE (pulmonry embolis) also a complication form his MRSA surgery. I only point this out because these conditions did slow down some of the bladder cancer treatments and surgeries. He had been on Coumadin and Lovenox (blood thinners) and he ended up having to have a filter inserted so he could come off blood thinners to have TURBT surgery and office Cysto's.
First treatment was 6 weeks of BCG. More tumors at 3 months. Doctor went back in for TURBT and there were 12 areas that were early stage tumors that were visible with the scope. I have a picture of this and it looks almost like warts growing all inside his bladder.
He was given Mitomycin C directly after surgery and had a very bad reaction. He was miserable for six weeks and never slept for more then two hours at time due to the pain, pressure and feeling the need to void. The doctor said no mytomycin for him ever again becasue of the side effects.
Three month cysto shows new tumors. Another TURBT and then treatment with 6 weks of BCG with interferon.
This brings us to yesterday. Three month cysto and there are two tumors. The doctor for the first time said "Well it looks like we have exhausted all of our choices". I knew that was coming. The doctor did take two biopsies- one of each tumor - and he said if they are low grade (husband has never had a low grade path) then he would consider a maintainence BCG but if they are high grade RC must be considered.
Opinions?

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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