The next step?

[DanDan]

Hello,
I'm new here. I had a 4cm testicular tumour removed in May, which turned out to be a classic seminoma, and I was hoping some of you may have some input on a decision I have to make based on your own experiences.

My pre/op CT scan came normal, while two of my pre/op tumour markers came back slightly elevated: my LDH was 2200; HCG 15 (AFP was 3, within normal range).

As a result of this, I had further blood tests two weeks after the op, in which thankfully the LDH and HCG decreased to normal levels (LDH 450;HCG less than 2).

The doc who contacted me with results said it was significant that they had dropped so much, so quickly, meaning the chance of anything having a half-life was diminished a great deal. So as far as I was concerned, I'd probably had a lucky escape and surveillance would be the way forward.

However, after seeing the cancer consultant for the first time today, she suggested I take a precautionary dose of chemo, as she said the chances of anything returning would fall from about 10-15% to less than 5% if I did. She explained it would be a single dose of Carboplatin AUC 7, but as it would be a strong dosage side effects were quite likely.

I'm going to weigh up by options over the next few days before making a final decision whether to have chemo rather than merely surveillance, but I'm leaning towards surveillance as I can't help but feel taking the drug would be a touch extreme based on how encouraging my tumour markers have been in such a short space of time. I realise if it does come back I'll most likely need to take an even stronger dose(s), but I figure that's a risk worth taking - although I think I might struggle to justify this to the wife :-/

I don't personally know anyone who's been through this sort of thing, so any advise etc. would be much appreciated.
Thanks
Dan

[Fed]

Hi Dan. Other than the large tumor, was there any L/V invasion mentioned in your pathology report? If not, you are stage I-A. Back in the day, even with stage I-A, you would get adjuvant radiation; however, treatment options are now more varied, and I am under the impression that at I-A, surveillance is usually recommended. I am a patient and work at Dana-Farber, and here they strongly recommend surveillance for I-A cases. Like you said, odds are good you are already cured. In the end, pick whatever makes you feel more comfortable. If you can handle the frequent follow-ups and all of their consequences, then go for surveillance.

[mahalomom]

Hi Dan,

Sorry you had a reason to be here, but welcome to this wonderful site where you will get advice and support.

I will let others chime in on medical advice. You will make the right decision for you!

~Mary Ann

[DanDan]

Thanks for the response, Fed. No, there was no mention of L/V invasion. I live local to the hospital here so regular surveillance (every 2 months to start with) is no great hardship. I'm thinking that could be the way to go.

[andy26]

Hey Bro,

My tumor was also classic seminoma and I did 1 dose of carboplatin just to be on the safe side. The only thing with you is that your tumor was quite large and your tumor markers were elevated. I'd go with the round of chemo but that's just me.

As far as side effects...mine were not as bad as I expected them 2 be. Whaterve you decide to do...you got this bloody cancer under control bro. I chose the wrong person to mess with.

Andy

[Smartie]

Hi Dan. Welcome to the forum.

Recently, here in the UK, it seems to have become the norm to offer carboplatin to patients with stage I seminoma. The British approach is to discourage patients from choosing surveillance. The thinking behind this is detailed in the 2000 UK guidelines as follows:

"Surveillance has been used in the management of stage I seminoma. However, there is no reliable serum marker and there is a risk of delayed relapse (recorded over five years post-orchidectomy)[...]. Prolonged surveillance is therefore required with the possibility of falling compliance. This is compared to a 3-4% relapse rate following retroperitoneal irradiation."


So they're saying that they do not favour surveillance because after a few years have passed, men tend to be more lax about attending their surveillance appointments, but relapses can occur quite late. Also, they are concerned that relapses may not be picked up by tumour marker blood tests.

(Note - these guidelines are a little old now and have been withdrawn (the main thing that has changed is that these guidelines talk about radiotherapy rather than carboplatin) but they do give an insight into the reasons that UK docs don't like to recommend surveillance for stage 1 seminoma).

UK doctors will pretty much tell you that if you have SI seminoma, you should have carboplatin to reduce your chances or relapse (whereas in other countries they would give you the option of carbo or surveillance, or possibly radiation).

At the end of the day, it's up to you. You could push for surveillance, and the docs will probably say OK.. Needless to say, if you do go with surveillance, it's VERY important to attend every appointment. On the other hand, carboplatin is well tolerated as a treatment and significantly reduces the chance of relapse.

Before deciding, I'd want to know for sure whether there was LVI or not, as that increases the risk of spread.

Good luck!

[Aegean]

In Canada, surveillance is pushed for Stage 1A and strongly suggested to be considered for 1B. It depends on many risk factors and how they coalesce to form your potential relapse rate. As Smartie says though, in the end, it becomes a personal decision.

[DanDan]

Thanks a million for responses –*think I'm going to have to think long (but not too long!) and hard about this one. I will let you know.
All the best,
Dan

[BAK]

Dan, i recently had the same decision to make myself, although in the US adjuvant radio is still recommended with greater frequency than Carboplatin. Regardless, I chose to go the surveillance route. I had no markers and a 2cm tumor, but otherwise a similar story. Ultimately, I decided the roughly 85% chance of cure s/p surgery alone was a strong push to do no adjuvant tx at this time, as there is no such thing as long term harmless chemo or radiation, even if short term side effects are tolerable. YMMV though, since I have easy access to my surveillance location and no problem following up for 5+ yrs if necessary. No decision here has proven to be wrong though in the medical literature, although I believe the decreasing use of adjuvant therapy and increasing push for surveillance has to do with more supporting data that treating a relapse down the road does not in any way decrease the disease free survival rate ultimately.

And although I know very little about the inner workings of the NHS, I do wonder if their push for adjuvant has anything to do with cost and rationing (multiple CT scans over an extended period, etc.) Nothing to back this up at all, just throwing a random thought out there.

[MRMRSU]

Good luck with your decision-making Dan. Ultimately, you have good choices - which ever path you choose.

[Mrs Moggi]

Maria's right - there is no wrong choice which is what makes it so difficult to make the choice.

My husband chose to have radiation rather than chemo or surveillance simply because he HATES CT scans and didn't think he would stick with it. We didn't consider chemo mostly because it was only mentioned casually (I dont even remember hearing it but my husband did). I also had little faith in his ability to track that much surveillance so we were happy with this decision.

Good luck. Your gut will tell you what to do.

[ukboyuk]

Hey Dan,

A dilemma that many of us have to face, myself too. My own team of oncologists at one of the best cancer centers in the UK (RM) simply gave me a choice. They didn't push one option over the other. I know Nick says that UK hospitals favour carboplatin over surveillance for Stage I seminoma, but I honestly don't know if this is still the case today. I do know that around a decade ago it was also sometimes the case to even give both radiation AND carboplatin and that is pretty much unheard of these days (unnecessasry). My guess is that they erred on the side of caution back then but today we now have several years of data of carboplatin vs surveillance and I understand that going for radiation, carboplatin or surveillance is pretty much 99% successful regardless. My own oncologist confirmed this to me.

As for the side effects of carboplatin, perhaps you've over emphasised them. I gather that they are pretty minimal and don't compare to BEP (chemo for a recurrence).

Your tumor markers may even be an advantage that could possibly make you a better candidate for surveillance as I think that markers show before a positive CT does. At least that appears to be the case for the non-seminoma cases I've seen here.

If you like figures then there's some good data here:

http://www.tc-cancer.com/forum/showthread.php?t=9299

I'm strongly thinking that this forum needs a few stickies, certainly one for the seminoma "choice". This is quite a recurring theme here.

When you eventually make your choice, don't look back. Being such a difficult choice, it's too easy to wonder whether you weighed up the options properly. Don't. Just get on with your life.

PS where are you being treated? I lived in London for 13 years.

[DanDan]

I'm at Royal Surrey Hospital - very impressed with them so far.
Yes, they did mention that the sudden drop in my markers post-op did indicate that they seemed reliable, and so any recurrance would almost certainly be reflected in an increase in these readings.

Thanks once again for all your responses :)

[Smartie]

I'd just echo what Chris (ukboyuk) said - once you've made a decision, just go with it and don't look back. Remember that you can't make a bad decision here - all the options are good ones.