100% EC - Stage 1 - need advice

[jwfaulco]

I just joined this board yesterday after finding it during my online research. I must say that it is a just a bit relieving to see that there are so many other men going through a similar situation as mine.

Here it goes...I'm 25 years old and was just married a little over a month ago. My wife and I were on our honeymoon in France when we found a small firm lump at the bottom of my left testicle. We discovered it 2 days before we were to come back home. She is a nurse, and obviously recognized that this was something I needed to get checked out as soon as we got back to the United States. I made an appointment to be seen by my doctor the second day we got back, and from there went to have an ultra-sound and then a urology appointment. My urologist recognized it as a tumor (gave me a 95% chance that it was malignant), and he said that it needed to be removed asap. He told me that it was a very small and young tumor and that we had caught it very early. My CT-scan results and blood work all came back clean, and there are no signs of vascular or lymphatic invasion. About two weeks ago from today I had my orchiectomy. I recovered from that surgery, and then last Wednesday I received my pathology results. The tumor was 1.3 cm and 100% embryonal carcinoma. I was told that this type of cancer is very aggressive, but I was very lucky and fortunate to have caught it at stage 1. However because of the type of tumor there is still an approximately 30% chance of a relapse (I don't like those odds), and I was given 3 options: Surveillance, RPLND surgery, or 2 treatments of chemotherapy, with all 3 options having their ups and downs, as well as risks, which I don't think I need to explain here . I have a meeting with an Oncologist today to talk more about these options. I need to decide how to go forward in the next week or two, and I thought it would be a good idea to ask for advice here, because this seems like a great community to get answers, advice, and knowledge. This all happened so fast, and it was very shocking, disturbing, and depressing, but I know how lucky and fortunate I am that I caught this little monster when I did, because I know that this situation could have been a lot worse had I waited or not found it when I did. Anyways thanks for listening, and if anyone could offer any advice on which option you think would be best for my case, it would be greatly appreciated. If you need more information from my pathology report, let me know. At this point I have no idea what to do...

[EricF]

Well congratulations on your wedding! Sorry you have to go through the whole TC thing. I too have 100% EC, however I have vascular/lymphatic invasion. This limited my option greatly and am now enduring the first of the three rounds of BEP. With you not having any signs of LVI you might be okay with just surveillance. Worst case you just delayed treatment for a little while, but best case is you may be all clear. Were any of your tumor markers elevated prior to or after surgery?
-Eric

[jwfaulco]

So far all my levels have been normal. Surveillance seems like the way to go, but the Urologist told me that I would need to do a CT scan every 2-3 months for the next 2 years, and that doing them so frequently can increase my chances of developing another tumor. But I should be getting more information from the Oncologist today.

BTW my name is Will.

[Fed]

Hey Will. Before I get into my take on your situation, I want to address a common misconception from your last post (emphasis mine).

So far all my levels have been normal. Surveillance seems like the way to go, but the Urologist told me that I would need to do a CT scan every 2-3 months for the next 2 years, and that doing them so frequently can increase my chances of developing another tumor. But I should be getting more information from the Oncologist today.

There is no evidence that a CT scan directly correlates with the odds of developing another tumor. The radiation from a CT scan, while greater than that received from an X-ray, is still too small to cause major damage. The concern about radiation provoking the manifestation of a secondary maligancy usually arises when you are actually using radiation to whack a tumor (such as in the case of seminoma patients who receive anywhere between 20 and 40 Gy depending on staging or colon cancer patients that can get doses as high as 85 Gy), but even then, the risks are long term (10-20 years) and the odds are relatively low.

Now, as far as your individual case, your doc is right in stating that EC is aggressive. As it stands, the odds of a relapse within the next couple of years are about 30%. I'm a big proponent of saving the ammo for when you really need it, so surveillance would be my first choice. If you elect this pathway you should do it with the mindset that a) you will need frequent bloodwork and scans especially during the next two years, b) you should be able to handle the mental burden and anxiety that comes along with check-up time, and c) if you relapse, the next step would likely be the full course chemotherapy for good risk disease (3xBEP or 4xEP) with excellent odds of being cured. The adjuvant chemo alternative is typically only given to patients that are stage I-B (with L/V invasion). RPLND is probably not the best choice here because embryonal carcinoma is adept at metastasizing via the bloodstream, so an RPLND in this case would not be curative.

I hope this helps out. By all means, let us know if there is anything else we can do to help.

[Domingo]

I found this site useful:

http://tcrc.acor.org/surveil.html

[Chi10]

Will, sorry to welcome you to this forum, but do know that it's good that you have a lot of options and that regardless of which you choose, your chances of putting this behind you are very very good. In July of this year, I was diagnosed with 100% EC with LVI. I opted for the RPLND because I was not comfortable with the anxiety of surveillance and didn't want to expose myself to the toxicity of the chemo unnecessarily. That said, I think you're a good candidate for surveillance. Another thing to consider right now that I think often doesn't get mentioned is your current and future access to healthcare. Active surveillance will require that your have access to healthcare for at least the next couple of years (unless you're going to pay out of pocket). If you think there might be a chance that you'll be without insurance, you should factor that into your decision. Best of luck to you as you move forward. This is a great forum for information and support. Stay strong. You'll get past this....

[jwfaulco]

Well, I just got back from the Oncologist a bit ago. I just took in a lot of information, but from what I understood he is saying that surveillance is probably not the best option for my situation, because I showed no signs of elevated tumor markers before or after the surgery, and that will make it very hard for them to monitor me, because they don't have anything to go by really, due to the tumor marker levels not being elevated when the tumor was inside of me. I'm not sure if I explained that correctly or not, but that was pretty much the jist of it. Also he feels that if something were to pop up on the ct scan during surveillance, at that point I would probably need to do more extensive chemo (prob 4 treatments). He is a very good and established oncologist at the University of Virginia hospital, and I felt like he really knew what he was talking about. He told me that he thought my best route, in his personal opinion, would be to go ahead with the 2 treatments of chemotherapy. This was his answer after we asked him what he would do in my shoes if this were him or one of his loved-ones. He also said doing the surgery (open or laperscopically) is probably his second choice, but I should really find out as much as I can on my own from the surgeon about all of the risks associated with it, and base my decision around that. He explained to me some of the risks and issues that could arise, both from the surgery and if they did find something on the lymphnodes. The good news is that whatever route I take my chances are very high that I will be cured no matter what happens, and really these are all good options to have for someone with TC. I am thankful for that, and at this point I am leaning towards going ahead with the chemo. Of course, I am newly married, and my wife and I want to have kids, so we need to keep that in mind, and we are most likely going to look into banking some sperm as back-up if I opt for the chemo treatments. We are going to continue our research and gathering as much knowledge as we can, as well as getting a second and maybe third opinion outside of UVA.

[FocalPoint]

From what I've read, banking sperm is something to consider when it comes to undergoing chemotherapy, however, in some cases people are able to reproduce perfectly normal after chemo, and in some occurrences where there was a low sperm count previous to chemo, it can return higher after treatment.

Granted, I'm 25 as well, have a girlfriend who I plan to be with for quite a long time, and have yet to have the surgery as I was just diagnosed Monday. No idea what kind of cancer I'm dealing with. I had blood tests done yesterday, and hopefully I'll have the results back by tomorrow.

I'm trying to be hopeful that after all this is said and done, I can live a normal life and reproduce naturally. I've spoken to the ladyfriend numerous times about how this would make her feel if I was unable to have kids after this was all said and done, and she's perfectly fine with it, and likes the idea of adoption. I'm just praying that's not the case, and I can just get this thing out of me ASAP, and go about my life.

[Aegean]

JW,

I want to throw in that I agree with Fed's statements and I too am a proponent of saving the ammo.

That being said, please note that EC can travel through blood and RPLND may not be first choice for stage one as it can bypass the lymphs and then you end up needing chemo anyway. Further, even after RPLND or BEP, you will need CT's for some time to come. The machine used in my hospitals imaging unit is a high-definition one and is calibrated every evening and uses 30% less radiation than normal CT's... ask the hospital where you do your imaging.

Here is a bit of an analysis of the actual potential radiation produced by CT's.

If you are intent on avoiding the surveillance route (a valid option based on your own here and now), please get a second opinion. Some EC guys have beat this thing with 1xBEP for stage 1... and your tumor was small. All to say, I am simply advocating a second opinion... I traveled 600km to get a second opinion in my case, I wanted to be sure of my decision.

[harryfraser]

Hi Will,

Firstly let me tell you a little about myself. I was diagnosed in Feb and relapsed in July and have just finished 3xBEP. I too had 100% EC.

I'm from the UK so we don't have to worry about insurance but I know this may play a strong part in what you opt for so I'm going to assume that insurance isn't and won't be a problem.

For me I chose surveillance, and here's why. Firstly by exposing yourself to etoposide there is a small but measurable risk of developing leukaemia around 5-10 years after treatment. By opting for surveillance you cab avoid this. You also keep your options open as the BEP is weaker than the high dose chemo which you may get if you were to relapse post BEP. You also avoid possible infertility and the other side effects.

So long as you keep to your strict follow up you are likely to be no less curable should you relapse further down the line. Your tumour sounds like mine - no LVI and normal markers. I relapsed with normal hCG and AFP with my LDH at 529 (anything <450 is considered normal) and that was caught through monthly blood markers and a CT at 3 months.

So in short if you are vigilant, organised and there is no insurance issue I'd opt for surveillance. If you want to know more PM me - I'm writing this on my iPhone so it's a bit hard to divulge into the full story!

Harry

[timbuk1]

similar situation.

hey will, i am in about the same boat as you. mine is a mixed germ cell with 40% ec. my doctors have been beating the RPLND drum from day one. I know they are surgeons and surgeons want to do surgery. i have decided to go the RPLND route for a couple reasons. but it is an individual choice. trust me i have spent many a sleepless night going over the options in my head. for me the RPLND seems like the best way to clear most of the thoughts. I am sure no one knows for sure what is best, as each person is different and each situation is different. one thing you dont want is a bunch of what ifs in your head no matter what you do. you can go over the numbers and the stats all you want but in the end the decision is up to you.

well my RPLND is scheduled for the 26th of this month, so if you decide to go that route (i am not endorsing, just sharing) feel free to ask me any questions as i plan on sharing the experience with this forum so others going through this can have an idea what it is like.

best wishes,
Tim

[DianeE]

Hi Will,

I think it's a great idea for you to get a second opinion from a TC expert. I don't doubt your oncologist is very good at what he does, but TC is such a rare cancer and treatment options in many cases require a TC expert's opinion.

As long as you don't miss any follow ups, I don't know how it's logical to assume that 4x BEP will be needed if there is a relapse. I understand your blood didn't present any tumor markers, but could that be because your tumor was so small? My son initially presented elevated markers before his I/O, and right before he had his RPLND, (of course after the I/O), his markers were normal, but five of the lymph nodes that were removed during the
RPLND had cancer in them.

Two cycles of BEP is just once cycle shy of full treatment for good risk disease that has spread, and if the case involves no evidence of spread, it is a lot of treatment that might not be needed.

In my none professional opinion, an RPLND doesn't seem to be logical either for non
invasive 100%EC.

As I've said many times on this board,

"The only wrong decision you can make is deciding to skip a follow up!!"

Diane

[Davie]

Well, I just got back from the Oncologist a bit ago. I just took in a lot of information, but from what I understood he is saying that surveillance is probably not the best option for my situation, because I showed no signs of elevated tumor markers before or after the surgery, and that will make it very hard for them to monitor me, because they don't have anything to go by really, due to the tumor marker levels not being elevated when the tumor was inside of me. I'm not sure if I explained that correctly or not, but that was pretty much the jist of it.

Absolute bunkum. Most early presenters do not have raised tumour markers. If that was the attitude, then nobody would take the surveillance route.

Also he feels that if something were to pop up on the ct scan during surveillance, at that point I would probably need to do more extensive chemo (prob 4 treatments). He is a very good and established oncologist at the University of Virginia hospital, and I felt like he really knew what he was talking about.

Really? How many TC patients does he see as year? With the kind of earlier advice, I doubt his credibility.

He told me that he thought my best route, in his personal opinion, would be to go ahead with the 2 treatments of chemotherapy. This was his answer after we asked him what he would do in my shoes if this were him or one of his loved-ones.

Surveillance is a very real and realistic route for you, saving you're chemo ammunition for when you need it. Survival rates are exceptionally good even if you reach stage 2A, and probably on par compared to having microscopic metatesis. There are studies made public that illustrate survival rates from stage 2A TC is around 98&#37; with 3xBEP. BEP Chemo should not be taken likely, as it presents a 1% chance of Leukaemia later in life given the use of 'E' Etoposide.

He also said doing the surgery (open or laperscopically) is probably his second choice, but I should really find out as much as I can on my own from the surgeon about all of the risks associated with it, and base my decision around that.

So he didn't mention that EC can skip the retroperitneal lymph nodes and go directly to the lungs? RPLND is a waste of time in this instance. Lap-RPLND - I'd want to have a bloody good surgeon who'd done at least 100 before (sucessfully). Risks include not removing all the nodes.

He explained to me some of the risks and issues that could arise, both from the surgery and if they did find something on the lymphnodes. The good news is that whatever route I take my chances are very high that I will be cured no matter what happens, and really these are all good options to have for someone with TC.

Best piece of advice he's given you. This is still true for surveillance

I am thankful for that, and at this point I am leaning towards going ahead with the chemo.

Get second opinion from a respected institution who know their statistics inside out.

Of course, I am newly married, and my wife and I want to have kids, so we need to keep that in mind, and we are most likely going to look into banking some sperm as back-up if I opt for the chemo treatments. We are going to continue our research and gathering as much knowledge as we can, as well as getting a second and maybe third opinion outside of UVA.

As you can see I can't multiquote!!. Sometimes I'm amazed by so called experienced Oncologists. I think there plenty of experienced hands on this forum who are more experienced in TC advice. Obviously none of use are doctors so you should always consult a specialist TC centre for a true second opinion. If an Oncologist only ever sees 2 cases of TC a year, he/she's never going to be that experienced.

Sorry to be so forthright, but I think on the whole you've been given bad or incomplete advice. Make sure you get those other opions from respected TC institutions.

Best of luck,

Davie

[west nile]

Hi jw -
I generally like to follow the Colin Powell Doctrine, which goes kinda like this: Massive amounts of firepower, liberally applied. Colin Powell would say the only guns to be using are the big guns!

However -- after doing 4xBEP this spring, and an RPLND in August, I'd definitely agree with everyone here that surveillance is the way to go. Both these treatments were absolutely brutal (at least for me) and I wouldn't ever do them again unnecessarily. Choosing surveillance now isn't going to reduce your chances of survival, so the only reason to take treatment now is to make your follow-up appointments a little less nerve-wracking. Maybe. But we ALL get a little anxious at the doctor's office, no matter what kind of treatment we've had before. Just remind yourself that you do what you do to protect your body -- from both the cancer AND the physical trauma of the treatments.

In your case, I'd tell Colin Powell to stand down for now. I know you want to be pro-active, but careful surveillance IS proactive.

[lenny]

I think that Fed and Aegean have a very different opinion than me on RPLNDs; mine I have discussed with a well-respected doctor and he agreed with me; my point is also well-supported by the literature (ask and I shall provide).

Yes, EC can spread hematogeneously (through the bloodstream), which means than an RPLND is less likely to be curative than for other pathologies, but you have to keep in mind the more important statistic, which is whether the tumour is likely to have spread in the first place.

Next to choriocarcinoma, EC is the most likely to spread of any pathologies. This means that, in most cases of clinically negative testicular cancer (that is, there is no evidence on CT scans, X-rays or markers), EC is the only pathology that's an appropriate candidate for an RPLND. You wouldn't do an RPLND on a more benign path because it's an invasive surgery, and the chances that it has spread are much lower. On the other hand, a 90-100%EC pathology is more likely to spread -- and thus need RPLND, and the chances of it bypassing the lymph nodes (and going straight to the lungs) are low (~<10%). So if there has been subclinical spreading, in the hands of a good surgeon, RPLND is more often than not curative , because it's only gone to the lymph nodes.

I see this point of misinformation spread religiously in the forum, and I continue to do my best to clear that one up.

In terms of your treatment, if you relapse, odds are chemotherapy will be curative, but chemo has a much broader suite of potential and longer-term side-effects than RPLND, which makes it less desirable as an adjuvant (preventative) option. So it comes down to how much trouble you want to go through now (e.g. surgery) vs, potentially, later on. The lack of good tumour markers is an important consideration, though, because if you do relapse, you want to catch it early. But please, familiarize yourself with the suite of side-effects associated with both adjuvant chemo (relapse rates generally <2 or 3%) and adjuvant RPLND (relapse rates with a good surgeon <10%).