Greetings

[Wai]

Hi all...bit of an update...

Had biopsy done on the smaller of the 2 nodes (1.5 x 1.8 for memory). The biopsy has come up as a negative. Apparently they couldn't get to the bigger nodes as there were blood vessles in the way. My tumour markers are still coming up as negative.

I have an appointment next week to discusss the next step but I think they will want to give chemo to be sure. I guess it could still be there but I would like to know for sure. Not sure if survellaince is still a good option or not?

[Wai]

Davie - I understand it is to be 100% that it is cancer. None of my markers are raised so they only have the CT scans to go by. If there could be other possible reasons why the nodes are enlarged, then it may be worth having. If not, I won't bother with it. Unfortuntley, I didn't think of asking this question when I was talking with th e Doctor last. So confused!

[Davie]

Wai,

What's the purpose of a biopsy? - to determine if it definitey is cancer, or to determine the make up of the cancer.

I would have thought that having a testis with embryonal carcinoma and now four months later having an RP mass shown up on a CT scan (which wasn't there when the testis was removed) is strong evidence of cancer. This can be confirmed by your AFP and bHCG serum markers (although not all cases are the values raised). My AFP and bHCG levels remained raised after removal of my testis, hence it was a no-brainer.

Secondly, I believe the treatment is the same no matter what the make up of the cancer is in the RP mass, i.e. 3xBEP.

If it were me, I'd wan't a very good medical reason before undergoing the trauma of a biopsy. Why do they want to do it?

Davie

[Wai]

Some good reading links guys...many thanks. It looks as though 3 x BEP seems to be the best route to take. Fortuntley, I am not a diver (and have never tried), but would like to do some of the shallow diving some day...hopefully I would not be impacted by this as Don suggests. Can I ask them to do a pulmonary function and stress test before I commence treatment and then one after to monitor the impact? Would this not be a reasonable thing to ask for? Considering they get a baseline of your lungs, hearing tests etc I would have thought this to be normal?

Davie - Sperm banking was done back in Jan before my op. Not of the best quality apparently but I hear that is common with TC patients. I might go and give some more as maybe the quality is a little better now after the tumour removal.

Any thoughts on the biopsy? Has anyone had this done?

[Don]

Being a person with a small amount of knowledge in regards to scuba diving and the do's and don'ts I can give you this advice..

The damage done to the lungs after Bleomycin is going to vary vastly from patient to patient.. 1 Person could show almost no damge and the next could show extensive damage.. If you would really like to proceed with scuba diving after Bleomycin then your definetly need to wait at least 18 months. After this time passes you need to schedule yourself for a pulmonary function and stress test.. They will be able to see how extensive your lung damage(if any) is.. Even if you do have damage you still have a 90% chanc e of being able to dive,so long as restrict yourself to no deeper then 2 atmospheres(66 feet deep). To be honest with you most of the diving hot spots in warm water(gulf and carribean) are no more the 45-60 feet deep in most cases. This would allow you to be able to still do some great diving in the Florida keys, Bahamas, St. Thomas, St Martin, Cancun etc.. First things first!!! Get healthy my freind.. You will have the rest of your life to worry about where your going to dive in the future.... Best of luck to you!!!!!!!! DON

[TSX]

If you are or intend on being a scuba diver the BEP will put an end to that.

There is a good explanation of why that happens in the following article (this is a direct link to a PDF document):

http://www.zuidencomm.nl/njm/getpdf.php?id=117

Another thing to point out is that the jury is still out on how long after Bleo one must wait to be safe. Right now to be conservative, doctors are suggesting that you should never dive after getting Bleo, but it appears to me that some believe that the problems created by Bleo could clear up over time and that if this were ever proven in a medical study, the doctors may change the recommendation in the future to keep away from diving for a specific length of time following Bleo treatment. Oh well, it doesn't hurt to hope this will happen one day, right?

-TSX

[dadmo]

This is a very minor issue but I want to mention it because it comes up here every once in a while. If you are or intend on being a scuba diver the BEP will put an end to that. My wife and I scuba and when our son was diagnosed we asked if he couldn't avoid the BLEO and the doc said no problem. He had some Embryonal Carcinoma and lung spot. As I said the scuba isn't usually a big deal but I want you to know as much as possible.

[Davie]

Wai,

Here's one article I found which has info on 3xBEP on 4xEP.

https://www.moffitt.usf.edu/pubs/ccj/v6n6/article1.htm

Given the toxicity of bleomycin, I took the opinion that I don't think anyone would risk giving it, if it didn't have a net overall positive benefits compared with not having it.

Your oncologist may have only seen a hanful of cases of testicular cancer in his lifetime, becuase of it's rarity. If you have any doubt why not e-mail or call a world expert listed below, whose centre may treat 100+ of these per year. There a few listed for Oz.

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

Have you started sperm banking yet? I had a delay of a week between confirming that I was having chemotherapy, and sperm banking before the chemotherapy started. Apart from this, treatment should be administered as soon as possible.

Davie.

[Wai]

Met with the Oncologist today. Didn't exactly inspire me with his knowledge and experience. A lot of the questions I asked him had to be checked with the professor (head of the unit) first. He said the professor has experience with treating TC and supervises treatment. That's a relief.

It appears I may have some choice on going 3 x BEP or 4 x EP. When I asked, they said the end result was similar. So, now I need to choose which option It would be good not having the Bleo, but then again 4 cycles sounds a bit daunting. I wish I knew how my lungs would go....I'm a non-smoker so apparently that may help a little?? Who knows....I got a bit to think about. But as Davie mentioned...looks like BEP is the favoured option.

I also asked about the possibility of having a biopsy done first. They are happy to arrange this and looks as though this will be done early next week. Do you think it is worth having? Is there anything else that could possibly cause the lymph nodes to enlarge? If it's going to be 100% TC it's probably not worth having...something else I need to think about! Has anyone had a biopsy on there node? Does it leave a big scar and did it hurt?

Regardinjg the RPLND...I asked and he said that he wasn't aware of anyone handling that sort of op here. He has however, organised for me to meet the urologist early next week to discuss. I certainly wan't it done by someone experienced as the op is to major to be taking risks with....especially with the nerver damage. I will mention Dr Peter Nash to them Steve...thanks. I think realistically though RPLND is starting to now look like a distant option.

I also asked the Doc about the potential benefits of taking Fish Oil & Vit C to help with the toxicity....all I got was 'It won't hurt'. Go figure...
I guess he's right, it won't hurt so I am taking 5000mg of VitC and 5000mg of fish oil a day.
Thanks for the feedback Davie & Steve on the work thing...your right...I will have to play it by ear and see how I go. And I hope things are going ok with your current treatment Davie...

One final thing...with all the tests and waiting around that I'm doing, could it be doing more harm? Realistically, it will be another 2 weeks minimum before treatment starts if required...will spread likley be minimal in this time? The Doctor's don't seem to be fussed by waiting so things can't be that desperate. Just makes me wonder sometimes if it is going to keep getting bigger I will need to have the treatment asap.

Wai

[nzsteve]

* The Doctor's were telling me in Australia, RPLND is not a favoured first option, they normally treat with chemo first. I have no idea if this is because of a lack of expertise or what....but anyway, by not having RPLND does it reduce my chances? Or will they replace it with extra chemo?

Correct - down in our part of the world they avoid RPLND as much as they can. There's around 15 of the ops done in Aus each year, and 3 in NZ. Its pretty much an experience / resources problem. Given that chemo cures most people they take that route first. There is a chance that even after chemo you might need RPLND to remove a residual mass. If this does happen I suggest you contact Dr Peter Nash, based in Sydney. I looked at travelling to Sydney for mine (stayed home in the end) and the general opinion was he was the best guy to goto.

With the chemo your best plan is to see how you go before deciding whether you will work or not. I was lucky with the side effects, but was very very tired. I managed to work 2 or 3 hours a day during the 'off weeks', but withdrew from 2 uni papers I was taking. I just didnt have the energy or concentration to read and write essays.

If youre living alone see if the hospital has an oncall community oncology nurse. We have them over here in NZ. I only used once, gave me an anti naseau injections when I was sick after getting a bleo shot, but it's nice to know theres someone you can call if you don't feel too great.

Good Luck,

Steve

[Davie]

Hi Wai,

I'm in a very similar situation to you having being diagnosed with one 3 cm abdominal mass. I'm current completing my 5th week of 3xBEP, so can offer some insight.

I believe that 3xBEP has been proven in previous clinical trials to provide a superior cure rate to 4xEP, and 3xBEP is standard traetment for "good risk" disease in the UK. However, I believe the benefit of 4xEP is that no bleomycin is used, which itself is pretty nasty.

Although you don't get any side effects like nausea or hair loss, bleomycin can be toxic to the lungs. Not wishing to scare you but I read a report from the Royal Marsden in London (where I'm being treated), which said that of the 835 patients treated with bleomycin between 1982-1999, 8 patients' (1%) deaths were directly attributable to bleomycin pulmonary toxicity. Risk factors included being over 40, poor renal function, doses over 300,000 IU (for 3 x BEP you have 270,000 IU) and having stage III disease.

That said I'm happy taking bleomycin as part of 3xBEP because it offers an overall better chance of a cure, but I do understand there are risks.

I have researched that in about 95% of cases of stage IIa/IIb (low volume disease), 3xBEP can eliminate all cancer. In the UK, I've been told that a postchemotherapy RPLND will typically be done if a >1cm mass remains. Although this is likely to be scar tissue, I think the reason for the RPLND is a mass >1cm is more likely to be amongst the reamining 5% that contain cancer cells, and also likely to contain mature teratoma, which is benign, but can become cancerous later in life. I have been advised that at stage IIb, I have a 33% chance of requiring a postchemotherapy RPLND.

As regards working through the chemo, my experience is as follows (although everyone tolerates it differently). After the first 3 day BEP session, I was wiped out for the rest of the week with heavy fatigue and mild sickness. The remaining two weeks, you could probably struggle back to work, but will need to take a day off each week for the additional bleomycin shot.

The second cycle was harder and appeared cummulative. After my 3 days of BEP, I was wiped out for an additional week with heavy fatigue. Once again you could probably go back to work in the remaining two weeks of the cycle, taking two days off for the bleomycin top ups.

Although I felt a lot better during the latter two weeks of each cycle, I felt by no means 100%. I was still tired, and concentrating was difficult.

My advice is to see how you tolerate the chemo, and play it from there. You may sail through it and have no problem with work, but on the other hand.........

Good luck with the treatment.........Davie

[Wai]

Thanks guys for the warm welcome....that website is also very informative. I will keep you posted on my meeting with the Doctor's tomorrow.

[dadmo]

Wai:
Welcome to the forum, I'm glad you found us. There are two standard treatments for Embryonal Carcinoma, neither of which is two cycles. You will get either 4EP or 3BEP, the attached link explains each treatment http://tcrc.acor.org/chemo.html. As you may know Embryonal Carcinoma can skip the lymph nodes and got directly to the lungs it may be because of that that the docs want to go directly to chemo, in your case the removal of the nodes alone may not be a cure. Don't let this get you upset, you will be cured the same as many others on the forum. As for working during chemo, my son was able to do desk work but it will be hard to focus on your tasks. The effects are cumulative so each round will be more difficult but you may be able to work. If you can that’s great but listen to your body and rest when you need it. If you have any further question just ask and know that we are here for you.

[Scott]

Welcome, Wai! I think you made the right choice in waiting until you knew chemotherapy is necessary before starting it. You'll need three cycles of BEP or four of EP. I'll leave the other questions to be answered by people who have been through it themselves. Keep us posted during treatment!

[Wai]

Hi all...

Well I guess it's a shame to be introducing myself under such circumstances but anyway....not much I can do about it. I'm a newbie here and I was diagnosed in January. I had a 100% Embryonal Carcinoma removed (19th Jan) and CT showed up clear. My tumour wasn't releasing any markers as well which made it more frustrating....they were relying 100% on CT's. They tried getting me in to 2 cycles straight away but I refused and wanted to try surveillance. I would rather have chemo knowing I 100% require it rather than have it and be forever wondering if it was required in the first place.

Anyway....CT a week ago showed 2 enlarged nodes in my abdomen. 1.5cm and about 2.4cm. I think it is a category 2B? I need to go in and see them tomorrow to discuss a plan of attack... naturally, I have a lot of questions in the meantime but I will try and keep it to a minimum


* With nodes this size, do you think any more than 3 cycles will be required? I was hoping for 2, but doubt that will happen. What are my chances with this? Is it early stage or advanced?

* The Doctor's were telling me in Australia, RPLND is not a favoured first option, they normally treat with chemo first. I have no idea if this is because of a lack of expertise or what....but anyway, by not having RPLND does it reduce my chances? Or will they replace it with extra chemo?

* For those who have been through Chemo, have you been able to continue working in a desk type role? I mean sitting behind a computer.... I would like to keep working if I can & study. I do understand though that it may vary from person to person.

Naturally, I have done a lot of reading through the internet & the board but it is nice to be able to put the questions to people who have been through the process. I will also ask my Doctor's of course hehe
I live alone and have only told family (who live far away) so I'll be doing most of this alone. Doesn't phase me too much. As long as I can move around. Luckily, I live pretty close to the hospital. I am going to face this head on, get it over with so I can get on with my life!!

Ok all....I will post again when I get some more news on my treatment plans but until then I appreciate any comments

Fantastic forum by the way....some amazing stories!

Edit - Sorry, I just realized this probably should be in the 'Just Diagnosed -- What's Next?' section, but it said newbies could intro themselves here..so I did. Feel free to move the thread

Wai