Got my three choices

[jason137]

Monday I had blood tests, the six week annivesary of the orichectomy, and got the results today. The urologist said the serum marker levels were perfectly normal. He told me about the three options: RPLND, chemo, or surveillance.

I'm tending towards surveillance. I work across the street from a clinic, so getting the blood tests and CT scans is trivial for me, I'm also not consumed by worry. If only I could see the oncologist there, things would be perfect.

My urologist said he's done about 12 RPLNDs, and sounded confident (he's a surgeon, so of course he's confident) that if I elected the RPLND it wouldn't be a problem as there are no (visible) tumors in the lymph nodes. He did say that if there were tumors in the lymph nodes he would recommend a surgeon more experienced my that surgery.

For the chemo he said two rounds would be likely, but I'll see an oncologist on Tuesday. They have an oncologist who specializes in TC, but it would be three weeks before I could see him. I just took the first one that could see me.

Consulting the net wisdom out there, should I have waited to see the oncologist who specializes in TC? What should I ask the oncologist?

Thanks,
Jason

[retroperitommy]

ask him about the long-term implications and how long the treatments will take, what you can do to keep things going well in terms of nutrition for example, and what you should and should not drink, how much activity you should attempt during treatmenttrivial stuff like that.

I am going to see my oncologist not until the 11 of september which I think is amazing that they make me wait so long. If you find anything out, pease post here, I will do the same and we can comare notes - since we're having similar timelines (my IO was on 7/28).

[Scott]

Given normal markers and clean scans, surveillance is a good choice. You're really already past the optimal window for RPLND, and I'd save chemotherapy for later, in case of recurrence. The odds are in your favor that you'll never need it.

[Karen]

Congrats on the clean markers and scan!!! I agree with Scott's comments and having a clinic across the street is sooooo convenient for you!

[IowaBrian]

I also agree with Scott as long as you can do the monthly blood work, monthly xrays, and Ct every 3 to 4 months I think that is a good choice.
Sounds like watching and waiting isn't going to bother you but I will tell you it can get stressful but if you have a strong support group and a good attitude going into it you will do fine and if something does pop up you can always do the chemo.
retroperitommy: 6 weeks is a long time to get a consult I would be calling and trying to get in sooner or find another cancer clinic if you have that choice. I got in about 10 days after surgery and it was over a 3 hour visit make sure to write down all of your questions or you will forget some of them as the doctor does their little talk first then will ask if you have questions.
Good Luck to all
Brian

[Kman99]

Jason..

6 weeks past I/O, you have essentially already begun a surveillance regiment. So, I agree with what the others have said about surveillance. I am a bit concerned that you waited 6 weeks past the I/O for blood work. Why? It may help us to know a few more facts...

- when was your first CT Scan and most recent CT?
- same for blood work?

I would push real hard to see that oncol (and urol) with more TC knowledge.

[dadmo]

I agree with Kman. Your doctor may be a good guy but I think you should find someone with more tc experiance. The fact that he gave you three options bothers me. Would he really let you get chemo if it's not needed or go thru an RPLND with no indication of spread?

[warev]

Well I am no expert in the area - when you compare with others on this forum, however in my experience I had two choices: surgery or surveillance.
I had no vascular invasion, normal blood markers, and my lymph nodes were normal as well.

I spoke with my doctor who is a surgical urologist and he gave me the options and told me to think about it and call him. I chose surveillance and after my decision he replied "you are a good candidate for it."

No need to go through more than is needed - chemo and rplnd are both huge.

[jason137]

Jason..

6 weeks past I/O, you have essentially already begun a surveillance regiment. So, I agree with what the others have said about surveillance. I am a bit concerned that you waited 6 weeks past the I/O for blood work. Why? It may help us to know a few more facts...

- when was your first CT Scan and most recent CT?
- same for blood work?

I would push real hard to see that oncol (and urol) with more TC knowledge.

The first blood test was at six weeks because that's when my urologist said to have it done. He said there needed to be enought time for the marker levels to decay normally. With AFP having a 7 day half-life, it would take about six weeks for the level to come back to normal. My AFP was 415 ng/ml, decaying normally after six weeks it would be around 6.4 ng/ml. Since < 10 is considered normal, this seemed reasonable to me.

I've only had one set of blood work (2006/08/28, six weeks post-op) and one CT (2006/07/28, 11 days post-op).

I my urologist how familiar he was with TC. There seemed to be a slight touch of defensiveness as he explained the dissemination of treatments is much better these days and how TC is part of his speciality. He said he sees about 5-10 cases a year.

I agree with Kman. Your doctor may be a good guy but I think you should find someone with more tc experiance. The fact that he gave you three options bothers me. Would he really let you get chemo if it's not needed or go thru an RPLND with no indication of spread?

There seem to be a few guys here who have had RPLND with no 'cause'. I remember reading about a study that said orchiectomy followed by 2 rounds of chemo brought cure rate up to 90% (from 70% orchiectomy only). Wasn't there another study that said orchiectomy + RPLND got a 90% cure rate as well?

Since it seems I'm going for surveillance by default, I'll cancel my oncologist appointment for tomorrow and get in to see the oncologist who specializes in TC.

My urologist also scheduled for an ultrasound of my left testicle in October.

[dadmo]

Yes an RPLND is sometimes done with no indication of spread. I'm not a big fan of that but that's not what bothers me. I was just surprised that he left all treatment options on the table for you to pick from. Anyway, with normal markers and no indication of spread you may have been cured by having the orchiectomy alone. You seem to be a great candidate for surveillance.

[Kman99]

Jason,

Was your blood tested prior to the I/O?

I'm not really too bothered by the doc presenting the 3 treatment options. Based on my specifics, I had a very active part in the decision process. That was difficult. A good doc will coach you through the options, but on top of this, I learned as much as I could on my own, got second opinions, asked lots of questions and made a decision on surveillance. As IowaBrian said, surveillance is tough at times. Having a positive attitude is important and regardless of your decision, you will be ok!

Keep asking questions and we'll do what we can to help you through this. And you'll be better off seeing docs with more TC experience. Just don't wait too long to see that new oncol!

[MRM]

Even without spread, an RPLND is still listed as standard treatment in the U.S. government's testicular cancer guidelines. 2 rounds of chemo is not quite standard treatment in the U.S., although quite common overseas.

I was initially referred to a hospital for an RPLND, but decided on surveillance. If you can handle the uncertainty of going on a wait-and-wait protocol, surveillance is a good choice. If you're a worrier or have concerns about frequent CT scans and radiation, an RPLND may be better. You're about at the end of the optimal time for an RPLND, however.

Just make sure you keep your surveillance appointments.

[jason137]

Cancelled my appointment yesterday with the oncologist. The coordinator is trying to get me in on September 14 to see the oncologist who specializes in genitourinary malignancies, http://scrippshealth.org/DoctorOverview.asp?ID=917. She said she'll beg if she has to to get me in on that date.

Was your blood tested prior to the I/O?

Yes, HCG: 16 IU/L, AFP: 415 ng/ml, LDH: 146 U/L

You're really already past the optimal window for RPLND, and I'd save chemotherapy for later, in case of recurrence.

What's the optimal window for RPLND? Why does it matter when it's done?

[dadmo]

With cancer in general the primary tumor controls the growth of secondary (or distant ) tumors. Often when the primary tumor has been removed the control over the secondary tumors is lost and they begin to grow as if they were each a primary tumor. With testicular cancer the most likely location for a secondary tumor is in the lymph nodes. If the nodes have cancer it seems to take the secondary tumors about 8-10 weeks to begin to spread. It is for that reason that it is recommended to have the RPLND somewhere around 6-8 weeks after the removal of the testicle or the completion of chemo. If you wait beyond the 8 weeks it is assumed that if the cancer were to spread it did and the RPLND would no longer be considered a curative. That is why you technically are put into the category of surveillance once you are beyond that 8-10 week window.

[Kman99]

Jason,

Here's a response to your question about the RPLND '6 week window'...with the web site linked below (which is a great site in general).

Patients with clinical stage I cancer who had their orchiectomy more than 6 weeks before the scheduled RPLND date should consider canceling the surgery. The RPLND is most beneficial if it is done soon after the orchiectomy. If you wait long enough before having an RPLND, you are essentially on surveillance and/or if they do find cancer during the surgery, it is less likely that they will have caught it before it spread outside of the surgical boundary. This is not a hard and fast rule, but unless there is a very good reason for delay, try to have the surgery done quickly.

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

I am confused about your bloodwork. You said in an earlier post that your blood was tested only on 8/28 or 6 weeks after the I/O. Now your saying it was also taken before the I/O (which it should of been). Are you saying it was taken twice (before your I/O in mid July and again in late Aug)?