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Diagnosed 4/19/17
Hi everyone,
I received the pathology report from my TURBT I had on 4/11. I have a Stage Two invasive papillary carcinoma, high grade (4.5 x 4.5 x 1.3 cm). My doctor thinks bladder removal is my best option but I told him I am uninsured (not eligible for ACA or Medicaid) and I would need to find other options or hospitals willing to work with me as that is way out of my league. I could do a chemo/radiation combo but I was told the cancer can return and it may fry the parts of the intestine used to make a sac in place of the bladder. Has anyone had any luck with those therapies?
I am supposed to have a CT of my lungs to make sure they are clear. I will then have an appointment with a BC oncologist. I will pick his brain to see what other options are available. Right now I’m just in a numb daze. Thanks so much for this group and your input!
CT Urogram 3.5 x 2.8 tumor found. – 3/23/17
Cystoscopy – 3/28/17
TURBT 4.5 x 4.5 x 1.3 cm urothelial carcinoma removed – 4/11/17
Dx T2G3 -4/19/17
MVAC begins – 5/9/1713 Replies-
MVAC is a heavy duty chemo but doable from what I have seen. The port will help a lot and it is not bad getting it in. A few hard won pieces of advice I hope you don’t mind of course ignore me and do as your doctor says. Don’t let you stomach get empty it is not about being hungry it is about not being sick to your stomach, I always kept a baggy of crackers with me. Start your anti nausea meds early I found for me that if I took them before I get nauseous that it worked better for me so ask if that might help. Stay on top of anything out of the ordinary as with any chemo things can change quickly. For instance if you think you are getting a cold let them know now a day or two can be the difference between an antibiotic and the hospital. I often think the whiners of the world are better off during chemo than the stiff upper lip types. Talk to a nutritiouist if you can they will tell you things like you need more protein while going through chemo. We are here for you please 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
Thanks Alan!
CT Urogram 3.5 x 2.8 tumor found. – 3/23/17
Cystoscopy – 3/28/17
TURBT 4.5 x 4.5 x 1.3 cm urothelial carcinoma removed – 4/11/17
Dx T2G3 -4/19/17
MVAC begins – 5/9/17
Thanks for posting, we are all here to listen and encourage.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Update: I start MVAC chemotherapy treatment next Tuesday. It will be 2x a week every other week for eight cycles. I attended a Chemo Teaching class to learn what to expect from the different treatments.
I will also get one of those port-a-port catheters in my chest the following week so my arms don’t become pin cushions.:blink:
Good news: CT chest scan did not show a tumor in the lungs. Let’s hope the MVAC can wipe out anything that might’ve escaped. I know the chemo will be rough but I’d rather not risk tumors popping up elsewhere down the road. Discussion about the RC surgery will start after the chemo is finished.
CT Urogram 3.5 x 2.8 tumor found. – 3/23/17
Cystoscopy – 3/28/17
TURBT 4.5 x 4.5 x 1.3 cm urothelial carcinoma removed – 4/11/17
Dx T2G3 -4/19/17
MVAC begins – 5/9/17
Hi Sean,
Yeah it it’s. I still haven’t agreed to the RC and am leaning against it so it may not be an issue. We’ll see. If I can find an MD who can answer my questions then I’ll consider it.
CT Urogram 3.5 x 2.8 tumor found. – 3/23/17
Cystoscopy – 3/28/17
TURBT 4.5 x 4.5 x 1.3 cm urothelial carcinoma removed – 4/11/17
Dx T2G3 -4/19/17
MVAC begins – 5/9/17
Good luck. I guess the ACA open window for getting insurance is over now, hey?
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
Hi CLTYXX,
The only other option my URO gave me was a chemo/radiation combination therapy but I was told the cancer could come back. I would need to have an RC afterwards but the intestine they would need to use for an ileal conduit would be fried by the radiation. If I do opt for an RC I want to be able to go into OR with a clear conscience. I can’t do that yet.
Best of luck with your second TURBT! I hope it presents the clarification that is needed in choosing the treatment that you feel is right for you. It’s anxiety inducing, I know, and the waiting between the procedure and test results can be nerve wracking.
Good luck with your research! I agree this group is a great compass and anchor while navigating the turbulent seas of BC. None of us is alone in this fight with BC.
Take care and best wishes in your search!
CT Urogram 3.5 x 2.8 tumor found. – 3/23/17
Cystoscopy – 3/28/17
TURBT 4.5 x 4.5 x 1.3 cm urothelial carcinoma removed – 4/11/17
Dx T2G3 -4/19/17
MVAC begins – 5/9/17
Hi Dawn,
I agree with you that it is would be a big life change if going RC. I am not sure I am ready for it. I had a pathology report that not showing conclusive results a couple of weeks ago. But my impression it very possible T2. I will need to have another TURBT so as to get it straight next month.
Meantime, I have read a lot of the posts in this forum and also checked a lot other online resources. There are more questions which make you anxious.
I am a data person and would like to get some ideas on:
1) Bladder preservation vs. RC
Are there any significant difference in the outcome? I have not seen any such conclusions yet.
2) RC vs. other treatments
I bought a couple of books which I guess some folks here can share their opinions.
“The truth about Cancer” and “Outsmart your cancer”. Plan to read them in the next few days and see if there are any other alternatives.I really appreciate the folks in this forum in providing the support and sharing their experience. I feel better seeing I am not alone in this journey…
Good luck!
CLTYXX
Thanks Alan and Hannah!
I am seeing a BC oncologist on Wednesday to get a second opinion and hopefully a different dx. I really can’t go along with the RC on a ‘maybe’ (maybe we removed the whole tumor, maybe we didn’t). I could have a clearer conscience about the RC if I knew they didn’t get it all out. It’s too big of a life change to go on a maybe. We’ll see what the BCO says. Thanks again for your help and advice!
Dawn
CT Urogram 3.5 x 2.8 tumor found. – 3/23/17
Cystoscopy – 3/28/17
TURBT 4.5 x 4.5 x 1.3 cm urothelial carcinoma removed – 4/11/17
Dx T2G3 -4/19/17
MVAC begins – 5/9/17
Sunchaserwolf, sorry to hear about you…I suggest taking second opinion as chemo will limit the damage but not completely eliminate the risk
Sunchaserwolf,
Sorry you have to be here but, welcome. Gary gave good advice on a second opinion especially on grade 2/muscle invasive cancer. Stage 2 usually means cystectomy as the gold standard for the best solution to give one the best chance of beating this. Radiation and chemo do not have near the success rate AND do damage sometimes limiting the type of diversion available. Getting the second opinion may also reveal a different DX so you do have a little time to ponder and ask more questions.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Hi Gary!
Thanks! My doctor is referring me to a residency hospital(?) which would be more affordable for me.
Now that I know what I have I can tailor specific questions for the BC oncologist. I will ask my GP to recommend another URG for a second opinion. Lol. I didn’t want to be a member but part of me had other plans.B)
CT Urogram 3.5 x 2.8 tumor found. – 3/23/17
Cystoscopy – 3/28/17
TURBT 4.5 x 4.5 x 1.3 cm urothelial carcinoma removed – 4/11/17
Dx T2G3 -4/19/17
MVAC begins – 5/9/17
Sunchaser
First a foremost, take a big breath. Then GET a second opinion at a place were they do a lot of these treatments usually at a college hospital that specializes in bladder cancer. They usually can make some kind of payment arrangement with you. I’m sure others on here will chime in with other information for you.
Sorry you have to be here but glad that you found use! Good luck!Gary
T1,NO,MO battling bladder cancer since 2005Sign In to reply.
