Second Opinion #2 from Dr. Lamm in Arizona - September 4, 2008

I was quite surprised to get a call from Dr. Donald L. Lamm in the early afternoon on Labor Day, Monday, September 1. He told me that he was using the day to catch up on things, and he apologized for taking so long to get back to me. I asked him if he had read all the information I had sent to him, and he surprised me a little by responding in the affirmative. I had downgraded my expectations somewhat after my consult with Dr. X, although I had some hopes that Dr. Lamm would have some new inputs on BCG maintenance treatments scheduled to begin a week after my cystoscope on October 23 - IF all goes well. Certainly Dr. X thought highly of Dr. Lamm in the BCG arena. My wife and I were both home, and Dr. Lamm endorsed my plan of putting him on speaker phone so that we had hands free for note taking and that we both could listen. Dr. Lamm's resume is quite impressive, he has written a number of textbooks, and he has the advantage of years of experience over both Dr. Hopkins and Dr. X.

We grabbed notepads and pens quickly and proceeded. My $300 fee included his review of my records and a "10 minute phone consultation," so I wanted to get as many questions answered as we could in the allotted time. I asked if he had any introductory remarks, and he told me he had written a brief report which he could forward to me via email. We exchanged email addresses for that purpose. He generally supported the original diagnosis, but was a bit more specific on the language - "You have high grade T1 bladder cancer with high grade Ta recurrent TCC on repeat resection, and you appropriately elected a trial of 6 BCG immunotherapy treatments." Dr. Lamm added that he had a detailed summary written, and suggested we proceed with questions.

Were any additional risks added from the bladder perforation during my first TURBT?
No. Well, not absolutely no. According to the surgical report this perforation was minor and well investigated, so the chances of any problems are very small.
Would any additional diagnostics be useful?
CT Urograms on the upper tract, which would be a routine part of your follow-up care anyway.
The radiology report from my CT scan indicated inflammation possible outside the bladder and/or in the transverse colon. Is there any cause for concern?
Not specifically. Dietary changes should address the diverticula. I'd advise you to consult your family doctor about this.
(Still a question for Dr. Chuck!)
I live at about a mile elevation. Is that a concern? Should I consider supplemental oxygen?
No. Doing some routine exercise would alleviate any issues of that nature.
What is your opinion on complementary Oncovite vitamin therapy?
A good diet will be more powerful than any vitamin regimen, including Oncovite.
I just bought a six months supply of Oncovite. Should I discontinue?
No - by all means take them. They won't do any harm, but you don't need them.
What about Modified Citrus Pectin?
The data on MCP are not as strong as the data for Oncovite, so again a good diet will be more beneficial. MCP should not hurt anything, but it probably won't help.
And hyperthermia?
We always use localized hyperthermia in conjunction with low dose chemotherapy. This regimen is used sometimes when BCG fails.
Hyperbaric, or others?
Look, you don't need any of that. The best hope to combat the disease is to follow my recommended courses of BCG maintenance, which I outlined on the written recommendation. These things like hyperbaric and hyperthermia are to fight cancer. You don't have any cancer right now, so the BCG is the thing that will best combat recurrence and progression. At this point those other things would be a waste of time and money.
What about specific dietary restrictions, such as avoiding sugar, or a radical change?
The diet you described on your medical history form is not too bad. I think there are a few changes that you could make to do better. I imagine you may have already implemented some changes?
Yes, I would describe it as a radical change - no pork or shellfish, no sugar, no processed food, no processed flour, no fried food, and organic or natural on everything else.
Well that's pretty close to what I'd recommend. You need to make sure that you are getting a minimum of 10 servings of fruit or vegetables daily.
We're in the early restrictive phase of the diet, but we will be up to that by next week.
Excellent. I will send along a report on foods and supplements that you might want to consider in addition. And if you keep up this type of diet, I expect your gout will clear up on its own. Limit red meat to once per week. Here's your order of focus:
1) The most important thing to do is the BCG maintenance as I've recommended in your report
2) The next single biggest contributor to keeping cancer-free is a permanent dietary change along the lines you are doing now. A vegetarian diet is optimal for reduction of carcinogens, so limit animal protein.
3) The next most critical thing is to do some form - any form - of regular exercise. Jogging, swimming, biking, whatever. It has to be more than walking around your office building.
I was afraid you'd say that last one!
If no cancer is observed on October 23, do the BCG?
Do you recommend any other diagnostics?
FISH urine test. Do it at six months. You had a positive FISH before, and a positive FISH at 3 months may be false. BCG needs six months to work, at which point you need a negative FISH result.
If cancer is observed on the October 23 cystoscope, is radical cystectomy is indicated?
If it's something less than high grade T1, you cannot conclude that BCG has failed. It takes six full months to do its work.
Can that grading and staging be determined via cystoscope?
No. You always have to resect to see what it is.
(This appears to be a significant difference of opinion from Dr. Hopkins and Dr. X)
For high grade or progression, radical surgery is indicated?
Yes, remove the bladder and 10-15% of the lymph nodes. For urinary diversion I recommend the orthotopic neobladder. I think you'll be happier with that.
(Dr. Lamm did not mention prostate, but I infer that it is also removed)
How long would I have to arrange for it and get it done?
Three months maximum.
I understand there are significant risks for loss of sexual function, incontinence, or no-continence associated with radical surgery.
Not significant if it's done properly.
Any pouch or neobladder techniques better than others?
I recommend an orthotopic ileal neobladder. It will preserve a normal lifestyle for you.
Any surgeons you would recommend for the radical cystectomy?
Well, there's a fellow in Phoenix, Arizona that I like a lot. His name is Lamm. {Laughs}
I thought you had retired from the surgery business?
Not at all. I did one last week. I do two to three every month.
If BCG maintenance continues, how long before we go back to TURBT and restart everything?
It depends on the grade. I might advise chemo plus hyperthermia. And I would never want you to reinduct with six BCG treatments. We would likely go on extended maintenance BCG, reducing dosages based on your reaction symptoms.

We thanked Dr. Lamm and concluded the call. In short order I received his written second opinion, which was a full page summarizing my history and a half page of specific recommendations. I also received his dietary advice in a separate file. The recommendation portion of his report appears below:
Impression and recommendations:
1. High grade, T1 bladder cancer with high grade Ta recurrent TCC on repeat resection. He is now post 6 week induction BCG, which was tolerated with moderate symptoms. He had Mitomycin C after the repeat resection, and not after the first due to bladder perforation. He has been offered cystectomy with ileal loop diversion and has elected (appropriately in my opinion) a trial of BCG immunotherapy. At his young age he would appear to be a candidate for an orthotopic ileal neobladder should radical cystectomy be required. I believe he would be happier with that diversion. Extended lymphadenectomy should, in my opinion, also be done if cystectomy is required. I would strongly recommend that he receive 3 week maintenance BCG. With his symptoms during the first course I would
recommend reducing the dose to 1/3 and giving up to 3 instillations at 3, 6, 12, 18 and 24 months, then yearly to 6 years, then at 8, 10 and 12 years to reduce the increased risk of disease progression after 10 years as reported in the Memorial Sloan-Kettering series. He now has an exceptionally good diet. Neither Oncovite nor Intron A significantly improves disease free status when the above maintenance schedule is used, but should be considered if he fails or does not receive the optimal schedule as described above. While CIS has not been seen, with high grade/recurrent disease it may be present, and he is certainly at long term risk for recurrence, progression and extravesical disease in the prostate and upper tracks. Periodic CT urogram and biopsy of the prostatic urethra and upper tract cytology may reduce that risk. I would recommend repeating his FISH at 6 months, and would follow him with cystoscopy/cytology every 3 months for 2 years, every 6 months for 2 years and then yearly. At his request I will send him a list of dietary and nutritional supplements that some evidence suggests is beneficial in bladder cancer. I also recommend regular physical exercise.

Don Lamm, MD
Certainly a better outlook than what I got from Dr. X, and much more helpful on a practical level. It's a bargain at $300. As I had agreed, I forwarded the BCG regimen and a copy of the full Lamm report to Dr. X via email. He replied quickly with a brief "Thanks for the update. Sounds like a reasonable plan." I need to get this Q&A summary, the Q&A summary from Dr. X, Lamm's full report and dietary recommendations, and Dr. X's reply to Dr. Hopkins for his review and consideration. Dr. X had felt that Dr. Hopkins would be willing to adopt Lamm's approach without question. My preference would be that Hopkins and Lamm would collaborate on my case. I'd certainly be willing to pay for it. Stay tuned...


Hannah said...

I love this Dr. Lamm! If you need big surgery (I'm praying you don't!), his recommended surgeon sounds great ;) He just seems so much more on top of things.

TK said...

What useful information from a fellow who seems to be a very practical and smart. Great! (and how nice that someone said you were at 'a young age.')

Lee said...

How come Dr Lamm didn't include hiking trails at Turkey Run state park in Parke County (home of the covered bridge festival) Indiana as part of his exercise recommendation? I am sure you would have recieved kudo's if you had told him you did about 2.5 miles in forrest and creek terrain!
Next time, its Brown County State park --- right next to IU :)

Steve Kelley said...

Lee, I'm still sore and tender in the groinal regions from your forced marches. Sadist!

Lee said...

No Steve, that was the Classie Chassie gentlemans club; remember your words "from now on I'm living life to its fullest" :) ... ok, so I am paraphrasing. take care

Kathiesbirds said...

Steve, sounds like sound advice from this MD. Have you heard about this new book by a Dr. who had cancer? It's called "Anti-Cancer, A New Way of Life" and here is the link to the story which apeared on CBS' Early show. He advocates diet, exercise and green tea. It is an excellent interview.

Joe Kelly said...

Ha! Didn't know he was here in Phoenix. I have an appointment with him now Jan 7th.

Anonymous said...

Thanks for including Dr. Lamms comment on Oncovite. They contradict his published papers on the effectiveness of Oncovite.

Steve Kelley said...

Dr. Lamm did not say Oncovite was ineffective. He simply said a good diet was more effective, so much more effective that Oncovite is not needed with a good diet. My personal research and results have also supported this premise.

Patrick Jivery said...

Can you help me dr lamm i have bladder cancer and the only reson i havent done any surgery is because my surgen told me i would not be able to have an erection again or any feeling pls help i have hoses coming out of my back and bags colecting urin and blood for months now 6024886001 patrick i am in apache junction az pls help if u get this dont know what to do

Steve Kelley said...

If you want to contact Dr. Lamm, who is in Phoenix, Arizona, you need to contact him directly at:

Dr. Donald Lamm
Bcg Oncology PC
3815 E Bell Rd
Phoenix, AZ 85032
(602) 493-6626