Adjuvant Carbo vs Surveillance

Hi Marc

It isn't an easy decision.  It's basically a numbers game.  You'll be told the statistical likelihood of your cancer returning within 5 years with and without chemo.  As a guide my numbers were 30% chance without reducing to 3% with.  I took the chemo, which is not pleasant, because the difference in the numbers was so big for me.  But there is still a 70% chance that I had chemo for nothing.

If your risk really is low and they recommend surveillance I don't think you'll be able to convince them to offer you chemo.  It isn't risk free.  

Best wishes

G

Thanks for the reply G

Hopefully your recovery and subsequent surveillance is going well? 

I guess I’ll just have to make a decision based on the stats / odds they give me Wednesday. I’m just the type of person who doesn’t like looking back thinking I could’ve done more. I’d like to do all I can now to hopefully make this my only experience of TC. 

Was there anything particular that you found hard during your chemo?

Thanks again for replying 

Yes, it went pretty text book really. Diagnosis and surgery in April 2020, chemo mid May. A few rubbish weeks and couple months under the weather. But able to get active and fit again through autumn. I did get tinnitus from the chemo unfortunately. It wasn't very bad, but unfortunately my Covid jab made it much worse in February 2021.

Hello Marc

i was in a similar position to yourself in Nov 2018, and was given the choice of surveillance or a single dose of Carboplatin . I took the treatment as would in theory reduce the odds of a recurrence from 20% to 5%.

I relapsed though approx 2 years later in November 2020 so underwent 4 rounds of EP, and then Radiotherapy in Dec 2021 as had another slight relapse. 

In hindsight I would still  take the same course of action, ie the one dose,  as I did not regret it,  as my mentality is to decrease the odds as much as possible. But saying that, the surveillance we are all under  is excellent, as we are all watched very carefully and it picked up both my relapses.

Whatever decision you take will be the right one, just rest assured from my experience that as long as you keep your appointments , if there is any evidence of a relapse it will be jumped upon promptly.

I wish you well in your journey and good luck

KOR 

Glad you're on the mend G.

I suffered from tinnitus for a month or so about 15 years ago..........I'm guessing if I go the Carbo route it's likely to come back! Just had my Covid booster yesterday as I was told not to have it before \ after surgery. Keen to get in before any treatment starts.

Thanks for sharing your experience KOR. I'm sorry to hear you've had a couple of relapses, I really hope you're through it now. 

Do you have any thoughts on bloods during surveillance? I had a seminoma and my pre-op bloods came back normal even though I obviously did have TC. If the cancer comes back in the future surely then my bloods would also come back negative - so what is the point? Do we rely solely on the CT scans or would a relapse (presumably enlarged lymph node) show up in bloods? 

Hello Marc

My pre op bloods were also all normal as well , I too was pure seminoma , but for my first relapse my LDH was shown to be high on a routine check up, so my scan was brought forward which diagnosed the relapse in the lymph nodes; the second one was picked up in a scan but my LDH was also heading upwards at the same time.

I hope this helps 

cheers

KOR 

Ah ok I understand now Kor. Thanks 

I had my oncologist meeting today so though I’d update this thread. The doctor suggested a relapse rate of 15-20% the one risk factor being Rete invasion. He offered me the choice as expected between surveillance or one shot of carboplatin. He suggested with the carbo shot my relapse rate would be potentially between 2-3%. I signed on the spot. I know it’s a not an air tight contract that it won’t return but I’d take 3% over 20%. Obviously I’m a bit anxious but I am booked in for next Thursday! 

One thing though was the ct scan did show a 4mm lung nodule. He did say it was 95% likely to be nothing (and possibly due to smoking)  but I wasn’t expecting that. Any thoughts? 

Hi

I would say you can be confident in his views. You will have regular scans in your surveillance stage so they will be able to monitor it. The chemo might make it disappear. I had a damaged saliva gland that was scheduled for surgery for months.  5 days into my chemo it was gone.

The Carbo cycle isn't too harsh. Just listen to the nurses, take the anti nausea meds to schedule, and don't over eat in the first few days. Some of the anti nausea meds are steroids and send your appetite crazy. They forgot to tell me and I couldn't stay off the pies.

Best wishes.

G