Conflicting Second Opinion

average · Posted: Wed Nov 18, 2009 11:23 am Post subject: Conflicting Second Opinion

I have had biopsy, CT Scan, PET Scan, Bone Marrow Biopsy.
Test results show lymphoma in bone marrow, lungs, spleen, multiple lymph node locations above/below diaphram. I have no major symptoms (minor night sweats, weight loss from 215 to 195). All blood work is in normal levels.

My current doctor feels that the weight loss is a concern even if i was trying to watch my weight. He also feels that high SUV from PET Scan, along with moving to organs, indicates that lymphoma has changed from low grade to agressive. He is also concerned about the location in the lungs. I am scheduled to start R-CHOP this Friday at 11:30am.

I got a second opinion yesterday (Tuesday). The second opinion doctor did not have the test slides yet only the written reports. Without seeing the location/size of the growth in the lungs he had the following opinion. I am a healthy 41 year old with minor symptoms. He does not feel the high SUV indicates agressive lymphoma. He wants to run test again in 3 months and determine rate of growth. Before considering chemo. Unless he feels my lungs are at risk after evaluating the slides. Problem is the second doctor's Tumor Board review (with the entire dept) is not until Thursday. I wont have results until Friday am - current schedule is to start 11:30am.

I dont know what to do. Any thoughts? Does starting chemo early extend remission time? I see many people who have posted with stage 2 who have gotten R-CHOP. How much of a factor is the stage? How much a factor are the symptoms? I am also concerned i am under evaluating my symptoms (i dont really want to be sick, i never take days off).

Thanks,
Average
_________________
Age 42
B-Cell Follicular NHL
Grade 1/2
Stage 4a
Diagnosed 10/5/09
RCHOP 6 Cycles began 1/8/10

ChemoMan · Posted: Wed Nov 18, 2009 3:05 pm Post subject: Re: Conflicting Second Opinion

Hi Average

Sorry to hear of your dilemma, a problem you don't really need at this stage.
What are your doctors qualifications? Is the first doctor an oncologist? Is the second? What type of lymphoma do you have and what stage is it? Without knowing these things it is difficult to frame a response to you.

R CHOP is good at achieving remission regardless of the stage of lymphoma. B symptoms rarely make any difference to R CHOP's efficacy either.

Come back with that info and we can see what we can do to help. At the end of the day this is a decision for you and you alone to make, so you need to do whatever it is that makes you feel most comfortable.
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

average · Posted: Wed Nov 18, 2009 7:59 pm Post subject: Re: Conflicting Second Opinion

First Doctor is Vice Chief, Oncology Services at highly respected area hospital. Fellowship at Johns Hopkins-Wilmer Ophthalmological Institute, Hematology/Oncology.

Second Doctor is Clinical Assistant Professor , Dept. Int. Med
Specialty Malignant hematology
Fellowship Hematology & Oncology 2009 University of Michigan
M.D & Ph.D
This Doctor will review my file with the Director, Leukemia/Lymphoma Program who is also the Director, Multidiscplinary Lymphoma Clinic and Cancer who did his Fellowship at Standord University 1981-1988. The second doctors are at a National Comprehensive Cancer Network hospital.

I have B-Cell Follicular Lymphoma Stage IV.

I think both doctors are competent, they just differ in philosophy.

Thanks
_________________
Age 42
B-Cell Follicular NHL
Grade 1/2
Stage 4a
Diagnosed 10/5/09
RCHOP 6 Cycles began 1/8/10

joepet · Senior User Joined: 18 Dec 2008 Posts: 377 Location: Japan

Hi average. Nice to make the acquaintance of a fellow Michigander.

One thing you don't want to do is act out of fear and pressure. Is there any way you can call the first hospital and ask them to delay the start of R-CHOP by a week while you get things sorted out with your second opinion? If they are not willing to be a little bit flexible, then I would seriously reconsider whether or not I want people like that being my primary caregivers.

You still have time. Get all of the facts, and _then_ make a decision!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

ChemoMan · Posted: Thu Nov 19, 2009 3:42 pm Post subject: Re: Conflicting Second Opinion

Hi average

I agree 100% with joepet, get as much info as you can and then make up your mind. Knowledge is power to you in this position.

You can find some good info here:
http://www.presentme.com/FLASH/20080927LRFGregory/

You can find more webcasts on this page:

http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1574367#

Good luck and keep us posted.
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

average · Posted: Tue Nov 24, 2009 7:54 am Post subject: Re: Conflicting Second Opinion

Thanks for all the good advice. I'm not sure if I was more open to the advice because some of it came from a Michigander. How can you go wrong there. Both comments were great. It was nice to get simple, clear outside opinions when I was not thinking totally clear under the weight of the time constraint. Your comments let me realize the time constraint was created, not real. The web links were also very helpful.

The second opinion doctor called Friday morning after their "Tumor Board" review and confirmed that they did not think i should begin treatment at this time. Not only was it a difference of opinion but they said it would be a mistake.

I still met with my main doctor that morning. He had some very good comments. He has presented at many review boards and indicated he could take my information and sell it to a review board two different ways and either get a 100% agreement to treat or 100% agreement to not treat. He made both agreements to me and had me sold either way. His main point was in a perfect world he would treat patients 1 hour prior to having symptoms that significantly affect a persons life. He is not that good - so maybe he is off by 3 months, 6 months; but he feels treatment is going to be sooner rather than later. He had no problem with holding off an treatment for now and running another CT Scan at the end of December (3 months after 1st round of test) to determine a rate of growth.

Maybe this is a mistake, but better to error on waiting another month then starting too soon if not needed.

Thanks again for the responses. They were very helpful.
_________________
Age 42
B-Cell Follicular NHL
Grade 1/2
Stage 4a
Diagnosed 10/5/09
RCHOP 6 Cycles began 1/8/10

joepet · Senior User Joined: 18 Dec 2008 Posts: 377 Location: Japan

Hi average,

Well, I wouldn't take a Michiganders word on _everything_ (such as asking William Clay Ford advice on creating a championship football team...), but in this case the course of action was clear.

Unfortunately, I fear that the decision on your treatment will not be so easy. As you've figured out, there probably will not be a definitive right answer. Most doctors that I'm aware of adopt a "watch and wait" attitude towards follicular lymphoma until symptoms start to appear, but in your case it is hard to say for sure that that is happening (I assure you, the night sweats associated with lymphoma are _not_ minor! You would be sopping wet and changing your pajamas at least once a night) Perhaps in this case even a third opinion would be of value?

The choice will probably come down to which approach you are most comfortable with. One thing that I will say is that, in the unlikely event that the cancer does not miraculously go away on its own, you will need the chemo eventually. Whether you are the type of person that likes to attack potential problems in advance, or wait until they actually require attention, will probably guide your decision in the end.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

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