First check-up

[UK Mart]

Hi - i thought i would check in and see how everyone is doing.
I'd just like to add that my gratitude to whoever set up this set and all those who contribute is immeasurable - without being able to read peoples' updates and take on board all of the differing opinions i know i would not have coped as well as I have.

I had my first follow up today - very reassuring to be having these I think but I didn't know that i'd be going to see the oncologist once a month for the first year (not that I am complaining)!

Had the blood tests and chest x-ray plus had my lungs listened to and chest and groin 'felt'.
I played my first game of footie too this week - couldn't believe how unfit i was even though i've been doing a fair bit of mountain biking over the past few weeks.

I've been back in work for a month and it now feels that the 3 months prior were just a weird kind of dream - i still don't know if the whole reality and seriousness of what I've been through has actually sunk in

However I think it's best not to think too hard or dwell on what might have been too much. Although it's been a kind of odd experience I do feel a more rounded person these days - I do believe that these things happen for a reason but i guess I'm still trying to work out what mine is...

Anyway! Can anybody tell me what happens next (I fogot to ask the onc )

Do I contact them or do they contact me with the results... do i even need to get the results seeing as i'll be back there in another 4 weeks or so?!!!!???

Thanks for listening and it's so nice to post into the survivorship area - it's been an ambition of mine for a while

Take care
Martin

[Karen]

UK Mart,
Great to hear you're doing well!!! My husband waits for the follow up appointment to get the results....I want to call and ask but he gets annoyed at me. Hey, I never claimed that patience was one of my virtues!! I suppose every doc has their own way to handle it, why not call the office and ask what the protocol is?

Your follow ups post RT seem very frequent. The US standards following RT for Stage I or IIa seminoma are as follows:

H&P + chest x-ray, AFP, beta-hCG, LDH:
every 3-4 mo for year 1,
every 6 mo for year 2, then annually
Pelvic CT annually for 3 years (for patients status post para-aortic RT)

My husband's onc has this schedule for the first 4 years:
exam, bloodwork every 3 months
ab/pelvic CAT every 6 months
Chest X-ray once a year.

No sense dwelling, live each day with joy and the added strength you've gained as a person from this experience. Welcome to the ranks of Survivor

[Sans rt1]

Karen - -

I have my first follow-up with my oncologist and urologist next week, and I have been doing some reading up in preparation. I am very interested in the follow-up protocol you quote as US Standard for Seminoma following RT that included an annual Pelvic CT. Is this a published standard that is available somewhere or did it come from your husband's oncologist?

I ask this because in my initial discussions with my doctors (pre-treatment), they said only bloodwork and chest X-ray, which I accepted because it agreed with the protocol that is posted on the Testicular Cancer Resource Center (TCRC) website. However, in my reading since then, I have found that a majority of seminoma patients never show blood markers (mine did not pre-op), and that for the few that have reoccurence post RT (recent w/o dogleg), a much greater percentage occur in the pelvic region (or elsewhere) than in the lungs - so chest X-rays will not catch it until it is advanced. These same papers recommended that periodic pelvic CT be part of the follow-up as your husband's indicate. But, this is not reflected in the TCRC protocol, so perhaps it is out of date - or pelvic CT is not standard everywhere. This concerns me as I wonder if that site is used as a reference by oncologists that see only a few cases a year as well as patients.

If you were provided with any references you could share, it would be appreciated. Otherwise, thanks for sharing your husband's recommended follow-up as it confirms what I am thinking would be reasonable for my follow-up. Hopefully my doctors will recommend this too, but I want to be prepared just in case.

- Roger

[rjs]

Roger -
You raise a common question and one which it seems I found differing answers when I asked the same question 1 year ago. I was diagnosed with Stage 1A - Seminoma w/o invasion and also had the radiation treatment. My first year had me do the Chest X-ray and Blood every 4 months and the CT twice in the first year. I had been told we would do this for 2 years, but now the Onc has revised the schedule for my 2nd year to X-Ray / Blood every 6 mos and the CT once a year. It seems to me your schedule falls within the acceptable range of choices. My concerns was always the increased exposure to radiation from the CT after having already been hit with the 3 weeks of radiation. It seems some doctors acknowledge that concern and try to keep the patients continued exposure to a minimum.

[Karen]

The current guidelines I cited were from:

http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf

There is certainly variation in what the follow is actually is for stage 1 seminoma, so whatever you and your doctor agree upon may vary.

[Sans rt1]

Thanks for the information!

That looks like a good resource I can quote if I need to. Perhaps my concerns about what my oncologist will recommend are unwarranted based on what you guys have shown me, but it is always best to be informed and prepared.

I will rest a little easier if an occasional pelvic CT is in the plan.

[Karen]

Sans rt1 (very clever username !),
If you poke around the Research Library on this site I think you'll find some very useful information and urls to resource sites. http://www.cancer.gov/cancertopics/p.../Patient/page5 is also updtaed frerquently and is a great source.

[Sans rt1]

Thanks, and thanks.

This is such a great forum - I am amazed how well it works and what good information is shared. I really wish I would have found it when I first was diagnosed rather than after my treatment, but better late than never.