Wanting Chemo?

Sorry to hear you are part of this "club"! From my understanding (unless you are in a trial which means the post-surgery treatment is decided for you), doctors / hospitals are required legally to present patients with all the available options, though of course oncologists and hospitals may lean towards one treatment more than the other.

However, it is my understanding that a patient has the right to choose the type of treatment after having been informed of all the options.

I've written about this on another thread, but to summarise my thoughts and situation-

I am not a doctor, but from reading loads and discussing with medical professionals, what I understand about the current state is this-

- The US now generally favours active surveillance (more than other countries) for seminoma and non-seminoma as the preferred route

- For seminoma (where carboplatin can be used instead of BEP), Europe (more than the US) tend to favour 1 or 2 cycle carboplatin as adjuvant treatment

- For non-seminoma, RPLND for later stages has been practised more in the US than Europe (apparently because of skill level and availability of surgeons with this experience), and outside the US, the chemotherapy treatment most often used is BEP

It is 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.

I was diagnosed with Stage 1 seminoma and my oncologist recommended 2 cycles of carboplatin as adjuvant treatment.

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.

Either way, whichever treatment you choose, the treatability / curability for testicular cancer is very high. The decision does depend on the individual though, and I believe mental and emotional state is important.

I've just completed my 2 cycles of carboplatin and despite fatigue and a few days of feeling nauseous, it was not that bad.

Hi

Hope you're coping well with everything. 

I am in a similar situation. I've had my initial appointment with the Oncologist post-Orchiectomy. As stated, my Oncologist left the decision up to me & provided me with info which include the statistics as above.

I'm 26, no children, stage I Classical seminoma but still will be opting for the Carboplatin. The main reason being, I want to reduce the % of reoccurance & in turn prevent potential (more harsh) BEP  treatment in future. But of course it will provide some peace of mind, knowing I've done everything possible at this stage to rid the cancer. 

Much like everybody on here, I just want this episode to be put behind me as quickly as possible and crack on with life. I'm sure you're the same. 

Read up, weigh up the pro's and con's and do what you feel is best for you. 

Hi,

Thanks for the reply, hope the wait isn't too bad for you.

That's really reassuring that you get some level of choice between the options, i think it would be difficult to be in a constant state of waiting

I'm hoping to have the appointment with the oncologist soon so hopefully i have a similar outcome, it really is the waiting that's the worst.

Thanks agin for the information, helpful knowing the experience from other perspectives. :)

HC24, I'm in a similar position as you right now. It's tough having two options and having to weigh the pros and cons of each. I think a little suffering in the short term is worth a better long term outcome. I am worried about the side effects of BEP though. Definitely a strange question of risk vs reward. Sending you positive vibes, sounds like you're in a good position. Things could be WAY worse.

Hi,

Bit of an update, i met with the oncologist today.

Turns out i have Non-seminoma teticular cancer, that was a mix of Embryonal carcinoma and Teratoma.

I had more bloods today and they all came back normal, but they were normal before surgery so i don't think they have ever been particularly relevant to the diagnosis.

I'm now having to wait to have a CT to see if there has been any change of the nodules on my lung, so it's more frustration again just being a bit in limbo.

But ahh well, i guess this is how it happens.

Hi, 

The waiting is very stressful & I’m pleased you are now getting some answers.

My son is 23 & is due to have 1 course of BEP, he chose the treatment over surveillance as his oncologist said there was a 50/50 chance of recurrence as apposed to 5% chance after BEP.

His bloods were mildly elevated before his op & dropped afterwards, he has no spread & although the BEP maybe a scary option, he feels it’s the better option in the long run....

Stay strong, you can do this, your in the best hands & try to remember it is one of the most treatable cancers.

Hi hc24,

You are finding out what cancer is.  It is uncertainty, waiting, trying to enjoy the day, appointment, waiting, uncertainty, trying to be normal, waiting, uncertainty.......

Luckily we have the best one!  But it’s still all of the above.  

in regards to wanting chemo....there is no test that can determine if we have cancer, bloods, scans, physical examinations are all indicators.  On that basis whether you have adjuvant chemo or not, there is uncertainty, waiting, trying to live every day life etc etc etc.  Personally having had more than my fair share of chemo, I would opt for surveillance everytime.  I personally believe to kill TC off, esp non-sem it takes more than 1 blast of carboplatin, Ie if you have TC mets it won’t kill it off, if you don’t have TC mets you don’t need it!  The evidence on the effectiveness of 1 round of carbo as almost preventative is mixed.  I’d roll the dice and aim for no chemo at all.  And if wrong it will be chemo 3*bep.  Whichever route chosen the % chances of cure remain the same.

My advice would be though - do whatever you think will help you get through this the best mentally, and if 1 boost of carbo gives you that feeling of being in control and makes living everyday easier, then do it.  

Remeber what ever you choose, there is a 95% chance you will be here in 5 years, this is mainly a mental battle.

take care 

dan

EGM - lets not play this down, it is not one of the most treatable cancers, it is THE most treatable cancer.  

The most treatable cancer is TC.  The second most treatable cancer? Relapsed TC.  Quote by the eminent TC expert Dr Einhorn

Hi,

As it is non-seminoma, should you be offered the option of chemotherapy, it will be BEP (as Carboplatin can be used only for seminoma). The number of cycles of BEP may depend on the Staging of the tumour and other risk factor variables, and the CT scan results. Non-seminoma can be more aggressive than a pure seminoma.

BEP is a harsher regimen than Carboplatin. Nevertheless, treatability / curability success rates remain high (whether you have seminoma or non-seminoma, and whichever chemotherapy treatment you may undergo).

I found this site to be very informative when I was initially getting my head around TC-

http://thetcrc.org

The waiting is the worst, but I tried to remain positive as best as I could.

Good luck!