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recently diagnosed
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Hi,
That’s great that you’re getting in to see Kamat and please convey my regards if you can. Do they accept someone without insurance then?
Did you see webcafe’s list of financial resources:
http://blcwebcafe.org/financialresources.aspSending best wishes,
Wendy -
Hi New2This,
Sorry to meet you here.
Was the tumor in the bladder dome? With the terminology on the path report – the focal glandular differentition – could mean as Wendy send, mixed or adenocarsinoma, but location may in the dome could also suggest urachal cancer (belly button cancer). Right now MD Anderson has a trial going on regarding this type od dx. They have posted criteria for eligibility on their website. Hope it helps.
From my understanding of urachal cancer, the cancer can metastisize without going thru the bladder wall as it grows in material external of the bladder. I was dx’d stage 3 grade 3 at time of RC/neobladder. The pathology after is what showed the urachal findings. I am doing 4 months of adjuvant chemo after the RC for micromets that are likely out there. If I wasn’t being treated at Mayo’s in MN….I would be opting for MD Anderson.
God Bless, you are in my prayers, Holly
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Hi Melodie – my husband has never smoked either, is 56, and other than colds and simple things like that, never been sick. I have to say he isn’t taking this too well. Especially after getting the word he should have his bladder removed. He is the type to fix things when they are broke, and he can’t fix this himself, making it very frustrating for him.
We still have hope that after further testing bladder removal won’t be necessary. We have gotten an appt at MD Anderson for July 17 (Kamat), so until then we wait. It seems we do a lot of that. I am thankful to have found this website thanks to my sister in law who has been helping us research all this.Any input others who have been through this can share would be helpful and appreciated. We appreciate the prayers too.
Thanks to all our new friends.
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New2This,
So sorry to hear you and your spouse have to go through this. I was dx’d with my cancer in early March, am also 56, always been very healthy and never smoked my first cigarette. I have no idea why I have cancer. I only know that finding this forum has helped me immensly in regard to learning and knowing how to move forward in a positive way. I encourage you to stay with us and I’m sure you will feel better about your situation, although it is a very difficult one to be in. Support is a very important issue, especially emotionally, and my experience is, there is no better suport you can get than to talk with those who have been there and done that. I will include you two in my prayers.
How is your husband doing now that he has been diagnosed ? He is very blessed to have you doing this research. Hugs to you. another new friend, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Thank you Wendy, this helps a lot with our decisions.
[quote author=New2This link=topic=1020.msg6353#msg6353 date=1183235599] According to what I read, if the cancer is in more places that the bladder, it won’t do any good to take the bladder out? [/quote]
Hi,
That is a very valid question to ask, as philosophies may differ when there is sign of spread. It seems to me that a PET scan would be a very good test at this point to see if the suspicious spots are active cancer or not. If your current doctor doesn’t have access to a PET, maybe you should find a doctor who does. You need as exact a diagnosis as possible.If there is lymph node metastasis, some surgeons will operate, remove many nodes and attempt an actual cure, while other doctors will not operate or even close people up when they see that lymph nodes are cancerous. Thus, it’s an extremely important detail to clarify.
I’m not exactly sure this path report is saying that there is no muscle involved, it may well be, but that is not the most important issue as any spread would make it moot and treatments would be geared to the metastatic- meaning chemotherapy and not surgery.
Some doctors will then operate if there is a total response to chemo, some will not and that also depends on the extent of the spread at diagnosis.Pathology should be checked out by an expert in uro-pathology. Your husband’s case is very complicated. Focal lymphovascular invasion means the bladder tumor is aggressive, and glandular elements means it’s of mixed cell type, probably adenocarcinoma along with transitional cell, also making it more complicated and worth it to engage an expert.
I know that Dr. Kamat from MDAnderson is a wonderful person, as well as an authority on rare bladder tumors. If you could get a consult for a second opinion I would recommend him, as well as the path dept at MDAnderson. If finances are a problem with MDAnderson, maybe just a second opinion on the pathology report from them could be an option and treatment given locally or at Southwestern…
Please keep in touch.
Wendy
New2This,
I am not an expert at interpreting pathology nor CT scans but from what I read it looks like your husband was initially diagnosed with a lamina propia CIS – carcinoma insitu cancer that had ot invaded the bladder muscle. I tried to google “focallymphovascular invasion present” to learn what that means with no realy success at understanding it. Neither pathology report shows invasion into the bladder muscle yet the pathology reports shows masslike lesions in the kidney, pelvis and lymph nodes that is stated as suspicious of cancer. I see that your doctor explained the abnormalities on the bladder were casued from the cystoscopy and tumor removal but how does he explain the masses on the kidney, pelvis and lymph nodes? I suggest your husband goes to one of the major univeristy hospitals in your area to get a second opinion and stated course of action. If near Southwestern Medical Center in Dallas they will treat him without your having to worry about the money. Cancer is a big enough worry without having to negotiate finances.
Rosie Ambs
Thanks Rosie.
I have copies of 2 path reports as well as the ct scan report. The summary is below and hopefully someone can help us interpret them regarding staging.Biopsy from 1st cystoscopy of 4-18-07
Bladder tumor, biopsies
Invasive urothelial carcinoma, high grade with focal glandular differentiation
Submucosal invasion is present
No muscularis propria invasion is identified in the sections examined
Focal lymphovascular invasion is present
Carcinoma in situ focally presentBiopsy from 2nd cystoscopy of 6-13-07
Bladder Tumor:
Invasive urothelial carcinoma, high grade with focal glandular features
Invasion of lamina propria is present
No definite invasion of muscularis propria identified
No lymphovascular invasion
Focal carcinoma in situ5-11-2007 CT Scan of the Abdomen and Pelvis
Findings: Bladder carcinomaAxial CT of abdomen and pelvis pre-and post intravenous, post oral contrast administration.
Within the posterior inferior left kidney, a masslike lesion of heterogenous attenuation and enhancement measuring 2.9 x 1.7 cm. Suspicious for renal cell carcinoma or metastatic deposit from a stated history of bladder cancer.
Within the pelvis there is thickening of the left urinary bladder wall. Adjacent to the left urinary bladder, within the pelvis, an ovoid soft tissue density measuring 1.8×1.2 cm, suspicious for metatastic lymph node or extension of bladder carcinoma. This is subjacent to the previously described bladder wall thickening on that side.Note about the CT results – Our Dr explained away these results saying he believed the abnormalities on the bladder were from his cystoscopy and tumor removal on 4-18-07
After the 2nd cysto, the Dr said he saw diverticula. We do have a picture of this. And he is sending my husband to have bladder removal, in his opinion.
We are so confused about all this, about which direction to take, about the staging and everything. According to what I read, if the cancer is in more places that the bladder, it won’t do any good to take the bladder out?
Hello New2This,
You can learn of the staging and/or type, grade of your husband’s bladder cancer by getting a written copy of the pathology report. I know that when first diagnosed and going through the inital shock of cancer there is confusion as what was said or indicated so a written report is best. If you are near Southwestern Medical Center in Dallas, I know they have to take and treat all residents in that area whether there is insurance or not. As a matter of fact, I did have insurance when I was treated there but it did not cover all costs of my bcg treatments. I worked out a very easy and low cost monthly payment plan. I am not familiar with MD Andersons policy on treating those without insurance nor the type payment plan they might have maybe someone else on the forum knows. My best to you
Rosie Ambs
Thanks Rosemary for your comments,
We are in Texas and 2 possible choices for hospitals that we know of are MD Anderson (expensive) and UT Southwestern – don’t know any costs yet. We believe both would give good care. It would be good to hear comments from people who have used these facilities. We have pretty much let one doctor be our guide so far and have come to the conclusion we must get more pro-active. We do have an appt next week with a urologist to start the second opinion route.
Dear New,
This bladder diverticulum factor is very new to me. I admit that I had to look it up. It seems that bladder divericula is a congenital abnormality…
this from WikipediaBladder diverticulum: Balloon-like growths on the bladder commonly associated with a chronic outflow obstruction, such as benign prostatic hypertrophy in older males. Usually found in pairs on opposite sides of the bladder, bladder diverticula are often surgically removed to prevent infection, rupture, or even cancer.
Sometimes we like to ask what area of the country you live, or if you are living outside of the US. This helps us to guide you to some of the very best hospitals for second opinions and sometimes for treatment. The hospital or clinic which you choose to give him opinions and or treatment will be of invaluable support to his cancer battle.
As far as BCG, etc goes, I couldn’t even fathom a guess.
As far as finances go, I wonder if a State subsidized hospital would be your best bet. But, first, I think you need to get beyond the second opinion.
Please keep talking to us here. As I said, this is a new one on me.
Best of luck,
Your new friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
