Choice between carboplatin and surveillance and worries about fertility

[andreid]

Hello everybody,

I am 32 years old and I was diagnosed with TC on June 2012. This came as a big shock and totally turned my life upside down.
Please help me with some answers as I don't know what to do next.

I had a left IO on the 27th of June 2012.
Pre op:
Blood markers HCG = 4.23, AFP = 2.54, LDH = 159
CT scan said no other problem in torax/abdominal/pelvic region

Post op:
Blood markers HCG < 1.10, AFP = 1.87
CT scan said all clear

The path report says:
pure seminoma, size of tumor 3.2/1.7/2 cm,
with rete testis invasion, no lymphovascular invasion is observed,
isolated aspects of Intratubular germ cell neoplasia,
spermatic cord margin is free of tumor (pT1)

And now the questions:

1) Is this IA or IB or something else?

2) My uro doctor (I haven't seen an oncologist until now) says I could do surveillance or 2 doses of carboplatin, but he recommends carboplatin just to be on the safe side.
What are the chances of a relapse for 1 dose, 2 doses or surveillance considering rete testis invasion?

3) I am planning to start a family but I just found out that my fertility is bad. Does 1 dose/2 doses of carboplatin affect fertility? Is it just temporary or not? Are there any studies about that?
I worry a lot about the fertility and I wouldn't want to lose the degree of fertility that I still have. They told me that even with ICSI it is better to use fresh than frozen sperm. So I have to make my choice regarding treatment depending on that.

4) I banked some sperm and the lab results said that it could be only used for ICSI. I only have 3 vials. Should I bank more vials considering that one vial is used for one try?

5) Any of you guys did fertility treatment with success after your I/O?

6) What should be the time interval between I/O and treatment?

7) Does it make sense to do a PET CT scan now? Or maybe better to do it after treatment (if any)?

Thanks a lot for your help.

[Aegean]

Welcome to the stage one seminoma club (or SOS as Paul54 sometimes refers to it). Very exclusive with an incredibly steep price to join. Seriously, welcome and sorry you had to find us.

Seminoma stage one is an utterly curable cancer with a survivor rate for compliant patients hugging the 100% line. Compliant means that you follow your treatment protocol for the prescribed period.

There is no survival rate difference for surveillance vs carboplatin vs radiation. Based on your info, the I/O alone has an 85% chance of having been curative. That means that if you do carbo, there is an 85% chance you do not need it. That being said, it is all about what makes you comfortable and lets you sleep at night and gets you past this cancer thing... getting it further, ad further in your rear view mirror!

Carbo is well documented to have no adverse effects, but the time frame for that documentation is short relative to radiation. The post treatment frequency of CT scans does drop if you do carbo, however I will caution that with new CT machines emitting lower doses of radiation and the advent of personalized scanning, the case against CT's and their radiation causing ill side effects is less and less relevant. It is well discussed in the forum and you can do a search on it.

I have given most of your questions a crack;


T

he path report says:
pure seminoma, size of tumor 3.2/1.7/2 cm,
with rete testis invasion, no lymphovascular invasion is observed,
isolated aspects of Intratubular germ cell neoplasia,
spermatic cord margin is free of tumor (pT1)

What exactly did the actual report say about rete testis?



1) Is this IA or IB or something else?

2) My uro doctor (I haven't seen an oncologist until now) says I could do surveillance or 2 doses of carboplatin, but he recommends carboplatin just to be on the safe side.
What are the chances of a relapse for 1 dose, 2 doses or surveillance considering rete testis invasion?

Chances of relapse after one dose 4-6%, after 2 doses it goes to 2-3%...

3) I am planning to start a family but I just found out that my fertility is bad. Does 1 dose/2 doses of carboplatin affect fertility? Is it just temporary or not? Are there any studies about that?

Carbo does not generally efect fertility, but to be on the safe side, banking some sperm at least temporarily is a good idea.

4) I banked some sperm and the lab results said that it could be only used for ICSI. I only have 3 vials. Should I bank more vials considering that one vial is used for one try?

You really need to discuss with a fertility expert. Just how many you need is a function of how many viable swimmers and your spouses fertility and a bunch more factors. I will however repeat that carbo does not seem to endanger fertility.

6) What should be the time interval between I/O and treatment?

If you are asking about carboplatin, then 6 to 8 weeks max post I/O

7) Does it make sense to do a PET CT scan now? Or maybe better to do it after treatment (if any)?

You have already had a baseline scan, the next one should be 4 months after the first.

[Paul54]

I add my welcome with regrets for winning this particular lottery. I can't add much more to what Zsolt has already provided.

Welcome to the stage one seminoma club (or SOS as Paul54 sometimes refers to it).

SOS can also mean Seminoma On Surveillance, which is where Zsolt and I landed. As you can see from our profiles, successfully for fairly long times. Concerning the Carbo option, I have not come across any studies which concluded that it has a significant effect on fertility. Even most guys going through a full regimen of chemo experience a return of fertility.

An interesting observation is that a certain percent of guys diagnosed with TC found out during tests for low fertility, i.e., when they had difficulting conceiving. The most interesting part is that sometimes fertility improves after the orchiectomy. I'm not sure why but the prevailing theory seems to be that the survivor picks up the workload of both testosterone and sperm. This is not a guarantee, of course, but I just wanted you to know that there is hope.

Paul

[andreid]

Steep price to pay indeed.
But if there is a good part in all of this, is that I have found you guys. I have found lots of info on this forum. All of you have helped me a lot and I thank you for that.

To answer to Aegean:

What exactly did the actual report say about rete testis?

I live in Romania so I had to translate my path report.
The correct translation would be "Invasion of the rete testis". So I have one risk factor.

Carbo is well documented to have no adverse effects...

Carbo does not generally efect fertility

Are there any studies about this?

In the meantime my doc told me that the stage is IA.

And something else...since a few weeks I am experiencing some back pain on the lower left side (my IO was on the left side) which worries me. Doc says it is nothing as the CT scan was clear. Anyone else had this?

Thank you for your answer Paul54.
I checked my sperm 3 weeks after orchiectomy and it wasn't better, it was worse .
What made me mad is that the lady at the sperm bank didn't want to bank it although she said that with this kind of result I do have chances with ICSI.

[Aegean]

A back pain is a back pain is a back pain is a back pain... usually. Yeah it could be a symptom of TC, but the tumor would have to be pretty damn large and you just had a ct scan and were cleared. Be vigilant, always mention worries to your doc, but don't let info on Dr. Google run your life.

One testicle was impacted by the TC and the other may not have completely picked up the slack. When you say the swimmers were worse, do you mean in terms of the number of viable candidates in a sample or their ability to actually swim the canal?(get to the egg)

[andreid]

The number of sperms per ml was smaller after I/O.
Before I/O at some point I had 9 million/ml and then 4.5 million/ml.
After I/O I had 2 million/ml.
Motility (how mobile sperms are) was bad before and after I/O.

[MJR]

I can't really answer some of your questions since my doctors treated me a bit differently, but I had pure seminoma, 1A with a 4.0+cm tumor and a sperm count issue before and after my I/O as well. Followed by 20 sessions of radiation. I don't remember all of the numbers or how bad it was, but I succeeded in becoming a father for the first time just this past November (4 years after my diagnosis at the age of 38) after only 2 months of trying. The remaining testicle picked up for me eventually (in fact, I turned out to be an even bigger horn-dog afterwards, ha), but it took much longer than a month after I/O.

That said, I'll second talking to a fertility expert about how much you should bank. If it were me, the more the merrier. And just out of curiosity, were your testosterone levels effected at all?

~Mike

[DanInVT]

Andried, I have a really similar case to yours. Basically same path report and diagnosis as you, just a slightly bigger tumor.

My I/o (also left) was 3 weeks ago tomorrow and I had some low back pain on the left side for maybe 10 days following the surgery. Honestly the thing that cleared it up best for me was meeting with my oncologist and him telling me that I could do surveillance or 2x carboplatin

I'm on the fence about 2x carbo or Surveillance myself. I mean there's an 85% chance we don't need the carboplatin....but i'm the kinda guy who'd rather not put things into my body if they don't need to be there. The idea of a CT scan every few months doesn't bother me.

I guess the thing I'd like to know most is that if someone in our shoes does surveillance and relapses, what's the treatment and how does it compare to just doing the carbo now?
....and if you (the collective you) do carbo now and relapse, what's the treatment like?

In my mind if the treatment in the event of a relapse isn't too much different than the adjuvant therapy, I'll just wait and surveil

I haven't got the bill for all this yet, so my dues aren't paid up yet ;-)

[Davepet]

I guess the thing I'd like to know most is that if someone in our shoes does surveillance and relapses, what's the treatment and how does it compare to just doing the carbo now?
....and if you (the collective you) do carbo now and relapse, what's the treatment like?

If you relapse during surveillance you likely get 3xBEP, I described it briefly in the other thread where you asked this.

I've not heard of anyone relapsing after adjuvent carbo, but I imagine 3xBEP would be used, someone will corrrect me if I'm wrong.

Dave

[Smartie]

I guess the thing I'd like to know most is that if someone in our shoes does surveillance and relapses, what's the treatment and how does it compare to just doing the carbo now?
....and if you (the collective you) do carbo now and relapse, what's the treatment like?

In my mind if the treatment in the event of a relapse isn't too much different than the adjuvant therapy, I'll just wait and surveil

I agree with Dave, that the likely treatment in the event of relapse would be 3xBEP. I would say there is a world of difference between1x or 2x Carboplatin and 3xBEP. Whilst both are very effect when used in their respective ways, carbo is a very well tolerated treatment which is given as a just-in-case, to clear up any stray undetected cancer cells. It has mercifully few side effects and should not stop the patient from living normally. BEP is given to deal with metastatic TC and is associated with some severe side effects over an extended period of time.

My own inclination would be to take the carboplatin.

[apple]

Hi there.

I had seminoma 1A, 4.8cm, rete testis invasion - in Summer 2010.

I had one dose of carboplatin.

All fine so far (due my 2 years follow up next week), and my wife is pregnant with number three. Life with one testicle is going just fine. The carbo was relatively easy, although I did come down with pneumonia 2 months after. That wasn't nice, but i made a full recovery. My oncologist thinks that was not related to the carboplatin. He also didn't advise sperm-banking as fertility is not usually a problem after single dose carboplatin.

Good luck with your decision; there is no right answer.

Best wishes,
A

[steveb_uk]

Hi,

I had a Seminoma, quite a big one but no RTI/LVI. I agonised over carbo v surveillance and read every technical paper out there. My conclusion was there isn't a wrong answer - a fact that is almost confirmed by the differing opinions you will get with respect to what to do! Its a very individual choice.

85% is about the risk of a relapse; the older papers suggest that LVI/RTI and size are risk factors, the newer papers suggest that risk factors should no longer be used i.e. they are not good predictors.

Speaking personally, I'm a very very risk adverse person. I concluded that for myself, my anxiety level would have been no lesser carrying a 4% risk after carbo as opposed to a 15% risk with surveillance, so I opted for the surveillance. Clearly against that was the heavy duty chemo of 3xBEP if I do relapse. I haven't regretted my decision.

Regards,

Steve

[andreid]

Thank you all for your answers.

I saw in your signature that you joined TRISST.
I googled it and and what I understood is that you are taking part in a study...
Are there any conclusions related to MRI over CTs for surveillance?

Thanks a lot.

[steveb_uk]

Hi,

Sorry for the belated reply, I haven't logged in for a bit.

That's right, its a study of whether MRIs can replace CTs with no detrimental effects on picking up metastasis. The study is also seeing whether reducing the number of scans would affect the overall outcome. The driver is one of reducing the overall radiation dose that one has from CT scans over the full surveillance period. Basically MRI doesn't use radiation but takes longer (45 min scan as opposed to a few seconds), and from what my Onc said, is a lot more expensive.
Unfortunately there's not a great deal of decent info out there comparing CTs and MRIs, hence this big study.
I have a benign lump on my brain for over 20 years which I've had regular MRI scans for, and got randomised in TRISST for the CT scans, so I'm having both.
Theres a very good thread about it here .