Choosing a doctor

[etim]

I was diagnosed with stage I Seminoma and had IO a month ago. I live in Colorado and seeing doctors at the University of Colorado Cancer Center, the Urologic Oncology program.

Firstly, I have to say the orchiectomy part went fine.

My problem is that the whole treatment process after the suregery somehow feels half baked. I am not 100 percent sure which doctor "owns" my case (I have seen three -- the first urologist was not in network for insurance, had to switch), what the sureveillance plan is and there's no feeling of continuity between urologist and oncologist. I do not see all the typical details on the pathology report, so not so sure about the risk.

I seem to have to pass orders from doctors to schedulers verbally myself and even then the information gets sort of lost (like they think I need CAT scan 3 month from now, the docotor said NOW, they do not have the info, I have to spend a day on the phone going back and forth). Besides, it is nearly impossbile to get the information passed via scheduling staff. The voice mails get lost, the phone system loses calls, computers do not work and so on. I guess the doctors are fine, but somehow the whole process is very stressful (it kinda scares me when I have to explain to receptionist what sort of chemo I need. Should it be written somewhere?).

So, I am sort of wondering if I should just go to some other place. Which poses a question where. The Univ of Colo is supposed to have the best specialists in TC in the area.

Any thoughts? Any recommendations in Colorado? Or just endure and rely on the Internet to make sure nothing is out of order?

Thanks in advance!

[etim]

And, just to add: my immediate issue is that I am going for adjuvant Carboplatin and concerned about follow up. I see people get blood tests and a lot of side effects. So far I have been told "see you in a month". If I get really sick after chemo "see you in a month" is not going to cut it. Spending 2-3 days trying to reach somebody (nor sure who) is going to be a problem too...

[mercyriver]

We are in Colorado too

My husband was diagnosed in Sep of 06 with Stage IIB Non-Seminoma. I am not sure what it is about Colorado...but we seem to lack intelligance when it comes to TC treatment.

Also, where did you have your pathology done? My husbands was done at Swedish Medical Center, same place as his orchiectemy. I obtained a 2nd opinon and it did change the orginal pathology. Honestly, they didn't know what they were doing.

So I advise getting a 2nd opinon on your pathology.

My husband is under the care of Rocky Mountain Cancer Center, while lacking much, sounds a bit more together then what you are going through. Which is very frightening.

I know there are a few other members of the forum who have themselves or a loved one been treated in Colorado. So maybe they can offer more.

Also, with regards to the urologist, my husband's urologist and oncologist only speak when needed, such as further treatment by the urologist because of advancing cancer, but that is about it.

Also, take a look at the list of experts across the nation, many of them will consult with your current oncologist to make sure you are getting the best treatment. With that said, we used Dr. Einhorn to consult with our Onogologist.

Please do not try to go it on your own, trying to make sure you are getting the best care, push your Dr to give you the best care. As many will say here, you are your strongest advocate!

I hope I have covered everything, please feel free to ask me more questions about our Colorado care though.

Beck

[TimsWife]

Hi ETim, Welcome. We live in Arizona & he did the Carboplatin x2 as well. pleas, let me know if we can be of any assistance. My husband Tim was diagnoised in March of 2006 with Seminoma Stage 1 as well.

God Bless.

[etim]

My husband was diagnosed in Sep of 06 with Stage IIB Non-Seminoma. I am not sure what it is about Colorado...but we seem to lack intelligance when it comes to TC treatment.

Also, where did you have your pathology done? My husbands was done at Swedish Medical Center, same place as his orchiectemy. I obtained a 2nd opinon and it did change the orginal pathology. Honestly, they didn't know what they were doing.

So I advise getting a 2nd opinon on your pathology.

My husband is under the care of Rocky Mountain Cancer Center, while lacking much, sounds a bit more together then what you are going through. Which is very frightening.

I know there are a few other members of the forum who have themselves or a loved one been treated in Colorado. So maybe they can offer more.

Also, with regards to the urologist, my husband's urologist and oncologist only speak when needed, such as further treatment by the urologist because of advancing cancer, but that is about it.

Also, take a look at the list of experts across the nation, many of them will consult with your current oncologist to make sure you are getting the best treatment. With that said, we used Dr. Einhorn to consult with our Onogologist.

Please do not try to go it on your own, trying to make sure you are getting the best care, push your Dr to give you the best care. As many will say here, you are your strongest advocate!

I hope I have covered everything, please feel free to ask me more questions about our Colorado care though.

Beck

Thanks for your response!

I am curious: what made you qestion the pathology results and what does getting a second op on the pathology involve? Do they send the slides over? Do they actually send over the original specimens?

My pathology report seems pretty straightforward, but light on the details. Seems like somebody filled out a predefined computer form ("click here if there's no tunica invasion"). What concerns me is that I did not see an indication of rete testis being invaded or not. It may be implied, but again, I am no specialist.

Another thing: looking at your signature, the sizes of the lymph nodes are in centimeters, I assume?

The Rocky Moutain Cancer Center is the second place (after UCHC) I keep finding on the Web. Do they have people specializing in TC and most importantly interested in treating TC? They seem like a private practice, may be they funded/organized better.

[etim]

Hi ETim, Welcome. We live in Arizona & he did the Carboplatin x2 as well. pleas, let me know if we can be of any assistance. My husband Tim was diagnoised in March of 2006 with Seminoma Stage 1 as well.

God Bless.

The doctors I am seeing have been talking about Carboplatin X1. I suggested Carboplatin X2 (after reding on the Web), the oncologist said "Okay we can do that too". I would have sorta expected a specific opinion from an oncologist, but he was "okay, whichever you want".

How were the side effects of Carboplatin?

[Fish]

Hi etim and welcome:

Sorry to hear you've joined the club, but you found a great website for info and support.

Your pathology report should be sufficiently detailed so that you can determine extent of tumor invasion, cell types present, etc. If it is not, you might want to have your slides read by an expert. With only about 7500 cases of TC/ year in the US (someone correct me if I got that wrong), many pathologists don't see it very often. An accurate pathology report is crucial to the decision making process. Here is a source for a second opinion:

Dr Thomas Ulbright
Dept of Pathology, Director of Anatomic Pathology
Phone: (317) 4 91-6000
For pathology consults, send slides to Dr Ulbright at this address:

Clarian Pathology Laboratory
350 West 11th Street, #4010
Indianapolis, IN 46202
The slides should be accompanied by the original pathology report. IU will charge a consultation fee for this service, so include a copy of your insurance information if you want them to bill insurance directly.



Have you had a CT scan and tumor markers done? If these tests haven't been done yet, you should request them ASAP. It really sounds like your oncologists are not familiar with TC. When my doctors act like this, I start looking for new doctors. Carboplatin is gaining acceptance for Stage 1 seminoma, but is not yet considered standard therapy. See this site: http://www.nccn.org/professionals/ph...testicular.pdf for detailed info.

You would also do well to consult a TC expert for advice, Dr. Larry Einhorn is very responsive to questions by email:

NAME : Lawrence H. Einhorn
PHONE : (317) 274-3515
FAX : (317) 274-3646
E-MAIL : [email protected]
DIVISION : Hematology/Oncology

OFFICE ADDRESS:

Indiana Cancer Pavilion, Room 473
535 Barnhill Dr.
Indianapolis, IN 46202-5289

I know this is all very stressful, but you are entitled to have all the info you need to help you make decisions.

Best wishes and keep us updated.

[Fed]

Etim,

Welcome to the Forum. I've just caught on with your thread and posts, and I have several comments. There are many items that need attention in order to ensure that your subsequent treatment goes adequately. I'll give you a run-down of the items that you have to heed.

The first, and probably most important, order of business is to get your treatment team on the same page. Sometimes you need to shop around to find a doc that is a good fit for you, but in all cases of cancer, a medical oncologist should be running the show. In some cases, urologists can hack this, but the real expert will be the oncologist who specializes in genitourinary (GU) cancers.

As far as the path report is concerned, Fish has given you great advice. The path report should be detailed enough that it will tell you everything and dictate treatment alongside the bloodwork and radiology. If you have stage I seminoma as you have indicated, you have three options: surveillance, adjuvant radiation, or adjuvant chemo. Carboplatin is currently being scrutinized as a choice for cases like yours, and although more data are needed for it to be conclusive as a treatment, so far the research data look encouraging. Several guys here have undergone Tx w/ carboplatin, so I'm sure they will chime in at some point. I will note that, at least from what is done here at Dana-Farber, carboplatin is only administered to people that are at least pT2 in their pathology.

Let us know if you have any other questions. We're here to help out.

[petep]

you can see my path. below...

sounds like surveillance is an option...I suspect you main two options with the chorio component would be surveillance or 2xBEP, post orch, as preventative...

with a recurrence it would be chemo....depending on where, 3xBEP or 4xBEP or 4xEP.

but if all the staging is correct, there is a high probability - around 70% - with no markers and clear scans...that you are done already, just with the IO.

regular checkups according to the published guidelines are the most critical factor if you choose surveillance.

I did get a 2nd opinion with einhorn...a few hundred dollars (out of state, not covered) and a plane ticket....best money I ever spent...my initial staging/path was correct...but having him confirm it just gave me that much more confidence.

pete

[etim]

you can see my path. below...

sounds like surveillance is an option...I suspect you main two options with the chorio component would be surveillance or 2xBEP, post orch, as preventative...

with a recurrence it would be chemo....depending on where, 3xBEP or 4xBEP or 4xEP.

but if all the staging is correct, there is a high probability - around 70% - with no markers and clear scans...that you are done already, just with the IO.

regular checkups according to the published guidelines are the most critical factor if you choose surveillance.

I did get a 2nd opinion with einhorn...a few hundred dollars (out of state, not covered) and a plane ticket....best money I ever spent...my initial staging/path was correct...but having him confirm it just gave me that much more confidence.

pete

Funny enough, I have e-mailed Dr.Einhorn (along with the copies of the path report and CT scans) and got a recommendation to go with surveillance.

Now I am even in a bigger limbo: my oncologist had discouraged surveillance, the best expert in the field encouraged it.

[alamike]

I am in the process of making this decision too. I have consulted several doctors and get different advice from each. I think that there is not really a wrong choice. The survival rate is essentially the same either way so it's not like you are risking your life making this choice. Whatever you feel is best for you personally. I am thinking I will do surveillance because I know I will do everything I am supposed to do for surveillance and because of other factors in my personal life. Also I would rather avoid treatment that may not even be necessary. That might not be the right choice for you though. I think Einhorn's advice has a lot more weight than your local doc though.

[TimsWife]

When I did research on 2x Carboplatin & spoke with Tim's Oncologist, I would absolutely recommend 2x vs. one time. The way it was described was:
1 x to kill any possible cancer
2x for insurance
Needless to say- we took the insurance!
Side effects- nausa, fatigue & Tim did have some problems a couple months after with huis legs falling asleep during the night- but that has gone away. It really was not too bad. He also gained ten pounds!

Tim is on a survelliance schedule as follows:
For the 1st 2 years:
Every 4 months- blood work, Abdomin & PElvis Ct W/ Contrast & Check-up
Every 8th months- a lung x-ray
Years 3-5 is every 6 months.
Years 5-10 is once a year.

I hope this helps!

[Fish]

Take a look at this:

http://tcrc.acor.org/surveil.html

It discusses pros and cons of surveillence for both non-seminoma and seminoma

I suspect that Einhorn is going with the odds. If 7 of 10 guys are cured after the orchiectomy, then why do any further treatment. 70% chance of cure is pretty good odds. If you happen to be in the 30%, then RT or chemo can be used at that point to get you to the cure. This way only the guys who absolutely need to have further treatment get it, and not guys who are already TC free.

But it is a bit of a waiting game. And you absolutely have to stick to the surveillence schedule. Any recurrence has to be detected early. It depends a lot on what level of stress you can handle, but even after RT or chemo, there is still follow up (surveillence)

There really is no wrong choice, and once you decide - no second guessing.

[petep]

just two points to help out with the confusion as to what to do...maybe a different way to look at things:

1. the best thing I heard from einhorn was whether I choise surveillance, rplnd, or 2 rounds BEP as preventative.....it would not change my overall cure rate...he said they were all good choices....

you hear that and you can let out a big sigh...because living or dying is the real issue here....the rest falls into the inconvenience category.

I asked him if it were him, what would he do and why...he chose surveillance and explained his logic....he would not worry, his job was not an issue if he needed 3xBEP in the future versus 2xBEP now, the extra BEP is not much harder/detrimental to the body than 2 rounds, the issue that he may be getting chemo when there is a 70% chance he does not need it...

most, most important - I asked if I do have a recurrence, by not having 2xBEP now, have I reduced my cure rate...and the answer was no, your cure rate with 2xBEP now, or 3xBEP possibly later will remain the same....that was what sealed my decision to choose surveillance.


2. I almost hate to tell you this but it may help....once you have cancer you are going to be going in for surveillance anyway....even if you have 2xBEP...the probability of being cured goes from 70% or so after the IO if stage I...up to over 95%....but you'll still be on surveillance after the 2xBEP.

what you want to hear is "OK, you are done, go home, we never need to see you again"...in reality, even after 2xBEP....you will hear, see you next month for bloodwork/chest xray....if you have a recurrence and then 3xBEP...you'll hear the same thing....so no matter what, you'll be on surveillance for the next 5 years.

Once you accept that in the card game of life, you got dealt cancer...it's part of you and surveillance no matter what you choose is going to be part of the routine...it really makes things easier when making this choice...

I suppose my point is if you tend to worry a great, great deal, you can and maybe should get the 2xBEP because you'll have changed your odds and maybe you'll worry less at surveillance appointments....but don't think the apprehension goes completely away because you will still be on surveillance...

For me surveillance was the right choice, even though I had a recurrence...I don't worry, it's not my nature - when I had a recurrence, I said OK, let's get going with chemo...I never regretted my decision or thought oh I should have gone with 2xBEP...I was just playing the odds...win some/lose some...

Hope this helps...

pete

[Sans rt1]

You are getting lots of good advice and information, but it comes down to what you are most comfortable with. When I was going through it all, I was extremely confused as to which doctor I should listen to for what - and they all seemed to recommend different things. You should listen to your oncologist, he is your cancer doctor. He should be giving you good information on each option - and the choice is up to you. Some have strong preferences, but don't be pressured - remember that most oncologists don't see cases of CT very often and may be referring to the same information you have at your fingertips online.

I was pT2 seminoma, and felt treatment was necessary. I did RT, but we had a lot of discussion about the 1xcarbo - I wanted to do 2x rather than 1x, but my oncologist was insistent that it wasn't done because it would increase the risks to greater than RT - and I could find no information on it.

The advantage of surveillence is you don't get treated if you don't need to. But you need to be able to handle the increased uncertainty and must be able to do your follow-ups religiously in the future. One thing that I have noticed, and perhaps it is because the 1x or 2x option is just starting to catch on in the U.S., is that the NCCN follow-up recommendations for the 1x carboplatin are the same as for surveillence with no treatment. I wonder if in Europe where that treatment is more common the follow-up recommedations are the same as the NCCN?