Seminoma stage 1, dilemma between surveillance and Carbo

Hi Ted44,

I was in a similar situation about 6 months ago and I think i must had a breakdown trying to decide what to do. Mine was a little bigger at 3cm and at PT1b due to rete and lvi. I spoke with several docs and they all advised surveillance. I found it to be a really hard choice and I eventually ended up on surviellence mostly due to my indecision but also me and my wife want kids and I already have low sperm count I was afraid the carbo might leave me sterile. Most people who have done carbo say that its pretty mild and in a few weeks are back to normal. At the same time its still chemo and theres a very big chance you dont need it. To be honest I still cant sleep sometimes stressing about my decision but I probably would have been either way. Another thing to consider right now is the corona virus. The carbo hits your immune system and may not be a good thing if you have to fight off a virus.

Thanks for replying, i understand the reasons you wouldn't want Carbo therapy but i can't personally live with the doubt...I will eventually go for chemo as i made up my mind ,i know it's still chemotherapy with all the cons that comes with it ,but a potential relapse with a 3xBEP chemo would totally devastate me.Corona virus is still dreadful though...

Best of luck

Hi Ted,

I can see you already made up your mind, but I just wanted to say I know what you feel! I was there back in 2017 with this dilemma and I went for carbo to get over with it and reduce the chances of relapse much as I can! Carbo is pretty much like a heavy hang over and your fine in max 2weeks with chances of relapse reduced to 2%

However just to show you the other side. I relapsed 1year after carbo and since that I went through 3xBEP (finally one year clear!), however looking back I would still do the same! I would go for carbo because it gave me the piece of mind that I've done everything I could! And that I relapsed that was just pure unluck! Doesn't happen to the majority to relapse after carbo!

Whatever you choose you will do the right thing! 

Wishing you all the best!! 

Huni

Thank you very much ! could you possibly tell me the stage of the cancer, tumor size etc that you 've been diagnosed with ?

That's really unforunate you had to go through all this, but i think we are more stronger that we think we are !

Be safe !

Hi Ted,

I had my orchiectomy in Dec last year and the pathology results showed Stage 1 "classic" or "pure" seminoma, with no signs of invasion elsewhere.

I opted for carboplatin (2 cycles as advised by my oncologist) which I did in Jan and Feb this year.

The chemo treatment itself was manageable. I was fatigued for a few weeks, but otherwise it was OK.

I was careful about self-isolation as the coronavirus was already making the news at that time. The big risk as explained to me by my oncologist was a drop in platelet and white blood cell counts.

Regarding your decision, there is no right or wrong, as going down the adjuvant treatment route or the active surveillance route is as much down to an individual’s personal circumstances and choice.

It’s generally accepted based on the statistics that the orchiectomy "cures" 80-85% (with no recurrence within 5 years), so that means 15-20% will have recurrence and this may depend on factors such as size of tumour and/or rete testes invasion. (Although if you read all the medical literature, this is not definitive, as it is based on data from various trials and studies, which were considering many variables.)

Therefore, those who opt for chemotherapy as adjuvant treatment are trying to reduce the risk of recurrence from 15-20%. Some studies show 1 cycle carboplatin for seminoma brings risk down to 5-6% with 2 cycles reducing risk down to 1-2%.

Another way to look at it is, chemotherapy may be over-treatment for 80-85% since that is the statistic that you're already "cured" from the orchiectomy. Hence, this is also why active surveillance is considered and is a viable course for many.

The reasons I chose to follow my oncologist advice to do the carboplatin (instead of active surveillance) are-

(1) my age- at 50 years, doing the less harsh carboplatin now seemed a better choice for me than possibly having to undergo the far harsher BEP regime when I am older should there be recurrence;

(2) I already have children;

(3) my follow-up will have less frequent scans, than if I had chosen active surveillance, and I did not want too many CT scans/radiation exposure;

(4) I also suspect I may find it hard to stick to the active surveillance regime of frequent scans and check ups (indeed, I have seen research that shows compliance with active surveillance drops off in many men as years progress);

(5) my personality is such that I feel better reducing my risk of recurrence now, than not knowing if there may be a recurrence later.

I wish you well on the journey, I realise that any decision for chemotherapy in the current climate carries an extra assessment of risk. For what it’s worth, my treatments were simple, just a few hours in the oncology day ward to get the carboplatin administered and then rest at home, so I was only in hospital for short time.

Best wishes, Kevin

Thanks for all the details , i am in the same boat as you and the reasons i go for carbo are exactly like yours...One quick question, did you have any hair loss ? Thanks anyway.

Hi Ted,

My oncologist said I could experience some hair loss, but it wasn’t much in the end, just some thinning (I was already losing hair normally anyway, so if you did not know me before, you probably couldn’t tell).

He explained the big risk of Carboplatin is allergy to the drug, but they give you anti-allergy drugs and monitor for reactions so it’s less of a concern nowadays. He said the biggest side effect is a drop in platelets/white blood cell count which he said usually is on Days 10-14 (so avoid crowds, get lots of rest). He told me that while individuals do differ in their reaction, he finds that Day 3 is when patients generally feel most fatigued.

It was remarkably straightforward- saw doctor at 9am, went to the oncology day patient ward, got prepped with the drip/fluids, some anti-allergy drugs, then 30 minutes for the actual administering of the carboplatin followed by the drip, out by 11am and back home by 11:30am.

It really was not too bad and the first 24-48 hours I felt a bit tired but otherwise OK. However, my hand was quite swollen and bruised from where they injected the drug.

I slept intermittently, 2-4 hours at a stretch only. I was drinking lots of water to flush out kidneys and could not seem to sleep for longer that 4 hours. I mainly listened to podcasts (too tired to read or watch TV, but did manage to do a bit of work on the laptop and to alleviate boredom). I could eat meals normally and did not feel too nauseous.

On Day 3, as the oncologist warned, I felt really tired and very nauseous and I couldn't eat anything solid. Spent the day in bed, drank lots of fluids. As Huni says in the comment above, it was like a bad hangover feeling.

Day 4 and 5 weren't great but I was steadily improving, with the nausea lessening, and I could eat lunch on Day 4 and lunch plus dinner on Day 5. After the weekend, on Day 6, I was feeling more "normal" and did a full day's work on the laptop (from home) but I may have overdone it as the following day, I felt a bit tired again

The second cycle was also manageable but I went into it slightly weaker (since I already had one cycle)- the blood test on the morning of my second cycle showed my platelets at the lower end of the normal range, and white blood cell count slightly below normal range- this is because my immune system had already been weakened from the first cycle- so my primary concern was staying healthy during these few weeks in light of the coronavirus. I pretty much self-isolated for months.

As another person said on this forum, just take it as it comes, rest / sleep when you feel you need to, and take it easy.

Good luck!
Best, Kevin

Thank you very much, very helpful info !

Greetings from sunny Greece !

Hi Ted, 

Just to answer your previous question, I had Seminoma, no spread anywhere, 4cm testicle tumour and 4100 HCG tumour marker level. 

All the best!

Huni

Hi,

I am currently undergoing the treatment for seminoma and have my oncologist appointment tomorrow to give me the results of my ct scan and discuss further treatment. 

did you decide on the chemotherapy and did COVID cause any delays? 

Has anyone recently undergone adjuvant chemo during the COVID spread and what is the process after?

any advice would be appreciated. I am slightly anxious about tomorrow.