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New here, looking for support for husband with BC
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Dr. Naftulin has some pretty good credentials for prostate cancer and he trained and did his fellowship at USC/Norris probably under Dr. Skinner. USC/Norris is a leading bladder cancer center.
As for UC/Davis you only need to look at their team and it consists of mostly prostate cancer specialists . Only one physician is recognised by the Fellow Academy of Surgeons Dr. Christopher Evans
http://www.ucdmc.ucdavis.edu/urology/ourteam/biodetail.asp?bioid=276
If you want a real second opinon go down the road a bit a couple of hours to UCSF and Dr. Peter Carroll
http://urology.ucsf.edu/faculty/facCarroll_bio.html
Its just a second opinion. And like i said you can do the mail thing to Hopkins.
I’m sure Dr. Naftulin knows his stuff but if it should come down the line to something more invasive you want a primary uro/oncologist at a major center…cancer or university ..that deals with bladder cancer every day.
pat
P.S. Dr. White is known primarily for prostate cancer anyway so i’d cross him off the list anyway!! -
Elle,
Good for you! You make a great point. Does he need another buddy or the top doctor he can get to determine treatment. I’m sure he can find more buddies at something like “who wants to play poker dot com”. :D
It’s great if you can get a top doc that is also tops in bedside manner but if you have trade something off, I’d pick the top doc part myself.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV. -
Hi Pat,
We are located in Sacramento, CA. Husband’s urologist is Dr. Brian Naftulin, who also did his prostate cancer surgery. If anyone is curious to know more, you can look him up. You probably can tell more than I can from an online bio.
I need to ask Dr. Naftulin about what’s being done with the pathology; my husband seems to have been relatively trusting that he’s doing what he should, but it’s time for me to start asking my own questions.
I work with people who are associated with the UC Davis Cancer Center, so that’s likely where we’ll end up for a second opinion. My husband has seen Dr. de Vere White there (before we were married), but he did not like him much. I need to impress upon him that just because you don’t like someone does not mean they do not know their stuff, and see if we can get him back for another discussion, as they should be on top of all the research, if anyone is.
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Elle..not sure where you are located but its always a good idea to get a second opinion whenever any Cancer is indicated. You may have a top notch uro but bladder cancer specialists a far and few between. If your husband does not want to actually see anyone or is resisting that second opinion you can do it by sending the slides and copies of the CT scans and other written materials to a high ranked institution like Johns Hopkins for a second opinion on the pathology. Here is the link if you’re not already going there! There’s a number to call and they will inform you what all you need.
http://pathology.jhu.edu/department/services/consults/urologic.cfmStatistics from major cancer centers find quite a margin of error and its just a smart thing to do if not to just confirm your diagnosis.
I noticed when i was diagnosed with breast cancer last December that it was manditory that the slides be sent to the top pathologist in the country for a second opinion and also samples were sent to California for Oncotype which bladder cancer does not have yet.
You may have a top uro but be sure his specialty is indeed bladder cancer.
pat -
Thanks, Mike. You are correct, it is mitomycin. I could not remember the name but remembered it when I saw it here.
He’s had one slightly invasive tumor (a few years ago) and I believe it was shortly afterward that they changed his treatment plan and swapped the mitomycin for the BCG. Only small, low grade tumors since then.
I agree with you about the second opinion. Now that I’ve decided I need to get more proactive about his health (we’ve only been married for three years and he’s had these problems long before then), I’m going to work to convince him to do that. Even though the current uro is highly respected, a second opinion is never a bad thing to have.
I guess with this kind of cancer, this cycle is pretty common, then? That’s sort of what I’ve been led to believe but it’s nice to hear it from others who have been there.
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Mitomycin is probably what he is getting now. You can get a lot of recurrences with this type of cancer and it sounds like the right course of treatment.
BCG is great for CIS but isn’t always effective for low grade and it doesn’t work for everyone. Mitomycin is the durg of choice for instillation if BCG doesn’t do the trick.
It’s going to be a pain in the butt on a regular basis because of the cycle but it is probably better than losing the bladder. If it ever becomes high grade or gets below the inner most layer that may be something to consider but for now, it sounds like the right plan.
It wouldn’t hurt to get the diagnosis and treatment plan confirmed at a major bladder cancer center. Doesn’t mean you leave his current uro, just means you get a 2nd opinion.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV. -
Thanks to all of you! To answer a few questions:
Yes, they are all low grade tumors, thankfully. BCG hasn’t been administered for a while, as it’s not working for him. They do administer another form of chemo (directly into the bladder) just after the surgery, which seems to be working a bit better.
Recurrences range; it’s been a year this past time, and he has surgery scheduled for Monday morning. Sometimes it’s 3 or six months, and I believe we had one stretch of something like 18 months. The current tumor was <3 mm in size when the urologist spotted it at the last cystoscopy, so we're staying on top of things. His urologist is considered to be top-notch, and we are actually switching insurance plans in order to remain with him (my insurance coverage would be better but I've been on a different plan.)
Yes, it's life in three month increments and we just try to live our lives normally in-between surgeries and cystoscopies. My husband has come to this site and started to read up, but I'm not sure if he'll get into the interactive thing.
Again, thanks for the support. It means a lot to me.
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elle….is he getting BCG treatments at all? You did not mention…just cystoscopy and removal. Are they all Ta or higher?
Maybe a second opinon from UCSF?
PAT -
Are these all low grade recurrences?
If high grade, that many recurrences would indicate that it may be time to consider more aggressive treatment (like an RC). If you haven’t already, then you may want to talk the the doc about what the trigger point should be for moving from BCG to an RC.
If low grade and they are catching everything in 3 month cycles then that’s a different matter. However, if going through BCG and still having so many recurrences, you may want to discuss the point of the BCG. Are the BCG treatment really doing anything?
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV. -
elle wrote:
My husband has been battling with bladder cancer for several years now. We go through the cycle of quarterly cystoscopy and, sometimes, resection. It seems he can’t get beyond a year or so without a new tumor appearing. So far they are not very invasive, but with each new occurrence, he becomes more frightened.
We’re in Sacramento and I’m having a hard time locating in-person support groups specific to bladder cancer. I think something like that might be helpful for him, but maybe there aren’t any? If anyone has ideas for us, please post to let me know.
I will direct him to this forum, as well as some other online resources I’ve found. Just thought that face-to-face support would be good for him.
Hi Elle
We sound like Husband-With-Bladder-Cancer twins. Our situation is similar. It’s a non stop cycle of cysto, new tumor, BCG – lather, rinse, repeat. The longest my husband has gone without a new tumor is six months.
We live out life in three month increments. I sometimes wonder how much more BCG his bladder can take.
My husband is the quiet type. Message boards and support groups are not something he is interested in. Your husband would probably find many of the male members helpful, supportive and friendly.
Best of luck!
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 -
The lack of local support groups, and the general lack of really good knowledge of bladder cancer issues, even among urologists, are among the reasons that led Cynthia to found this group.
Many of us find the support we need here, as well as the wealth of information on our conditions. As you and your husband peruse our forum, you will see what I mean!
We all welcome you here.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
Thank you, jj. The San Francisco group was the closest one I could find, also. He has had prostate cancer and has been through that surgery and is doing very well in that regard, so he’s kind of an old hand in that realm. The bladder cancer, as I’m sure people here know very well, comes with its own peculiar set of problems and stresses. I’m sort of surprised that there are so few support venues, but I will continue to direct him toward this forum and hope that perhaps here he can get the support he needs.
Thanks again for your answer.
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“In person” support groups that are bladder cancer specific are not very common. I believe there is one in the San Francisco area, but as far as I know that is the closest to your locale. For men with some of the issues of bc particularly after RC prostate cancer support groups are a fairly decent fit (Man to Man). For low grade, non-invasive disease this might be of less help, but they are at least other men dealing with a chronic condition and the side effects of treatment. Probably less to be gained from a general cancer group, although I regularly attend one of these and enjoy the fellowship. Best wishes,
jj
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