A Cautionary Tale and a Question

[Pilgrim]

Hi Paul - A Fellow UKer

Hi Paul

I just found the site yesterday. I too am UK based, and at a similar stage of treatment as you are, with the added twist that I have a senior job in the NHS too!

Was really apalled to hear about the lengths you had to go to be seen, especially as it should be possible to get an ultrasound direct from A&E - not that you should have had to go there at all, your GP should have referred you if in ANY doubt.

On the positive side, if you want to understand the drill within the NHS, the place to go is the website of NICE (The national institute for clinical excellence). This is the body in the UK that sets clinical standards. They produced guidance called "Improving outcomes guidance" for Urology cancer services back in 2002, as well as reviewing specific new procedures as and when they come up.

I found it quite helpful to look at the research on radiotherapy vs single dose chemotherapy vs active monitoring for early stage t. cancer.

You need to feel free to ask the specialist what the latest research suggests about the difference in outcome between having a treatment vs having alternatives - and weigh this against the side effects of the treatments.

I am doing the same. I see the oncologist on Tuesday. I'll compare notes with you.

God Bless

Pilgrim.

P.S. If you are looking for a new GP, one thing to ask about is how they did on QOF points (Quality points) and how they compare to other practices. The good ones will score 90%+

[Paul G]

Hi TimsWife,

Many thanks for you email and your support.

I'd like to ask you few of questions if I may. How did Tim find the 2 course carboplatin regime? How long did the whole thing take and how long until he felt back to normal?

Thanks again to all who've written, I wish you all the best of luck.

[TimsWife]

Paul, if it turns out that the spot in your lungs is unrelated to TC and you are interested in the 2x Carboplatin let me know, my husband just finished that treatment 4 months ago. If we can be of any help, we are here.
Kelly (Timswife)

[UK Mart]

Hi Paul, sounds like you're coping really well... if you haven't already discovered in your reading, being UK based, the protocol is that you will more than likely be recommended to go for a low doseage course of radiotherapy given that there is no firm sign of spread out of the testicle that will zap any stray cancerous cells. I wasn't really given a choice (although I could have refused if I had wanted to) and this option gave me odds that I liked.

Following on from that I think we're really lucky over this side of the pond in that my surveillance is now monthly chest x-ray and blood work for the first year (- they really keep an eye on you which is reassuring), then every two months for the second year, every three for the third year and twice a year for years four and five. Also I am due for my first CT scan as I will be 6 months post op next month - IIRC I get a CT scan every 6 months.

All I can say is try and trust your oncologist (it's their job) but also do your research and when you do see your onc, ask as many questions as possible.

Stay positive!

[dadmo]

Paul:
You are also in control of your life with respect to the cancer. You are the boss not the disease. You are and will remain in control.

[Paul G]

Thanks for the advice guys. I'll let you know how I get on and whats decided, I know that treatments can be slightly different this side of the pond. Anyway I go back to work tonight which I'm really looking forward to ..... I get to control whats going on ..... aaaah bliss

Have a great weekend.

[dadmo]

Paul:
I would save the chemo for when you are certain it's necessary. You have time on your side with seminoma, I would go with close surveillence and then if needed go for the full 3XBEP or 4XEP.

[Fish]

Well you definitely don't have an easy decision. I would be very hesitant to do only 1x or 2x chemo if a lung nodule is cancer. Standard treatment would likely be 3x bep or 4x ep. Of course you don't want full blown chemo if that nodule is nothing. I'll tell you what I would do --- in the absence of a PET scan or any other conclusive identification of that nodule. I would go with surveillence, perhaps ask for tests every 2 months, and see if that nodule gets bigger of if beta-hcg becomes elevated. Really with seminoma, you can afford to wait a bit, since this cell type is easy to kill. After my nodule was first noted, my oncologist waited 3 months to re-run the CT scan. So even he did not feel it was so urgent that monthly follups were necessary.

Even if the nodule grows, it would still be considered a good risk seminoma and chemo at that point should knock it out. My personal feeling was that I only wanted treatment if I KNEW it was necessary.

But ultimately, you have to decide what degree of uncertainty you can tolerate.

Best wishes.

[Karen]

Paul,
If the spot on your lung is TC radiation won't be an option. Based on all I've read here from the guys these lung spots on CT tend to be nothing. If you can get a PET that'd be great, since your traetment will hinge on what that is. Sounds like you're doing your reading! The tcrc site and a number of the papers in our reserach library here are great primers. If you're still on the fence the experts list is great for even a consult and second opinion.

[Paul G]

Hi Guys and Gals,

Many thanks for taking the time to respond. I've spent the last 10 hours or so digesting all the information I can on this topic. There follows my inital thoughts and rational on what kind of treatment I should go for. I'd very much appreciate your comments.

I'm not too keen on the prospect of radiotherepy as if it has gotten to my lung, radiotherepy of the pelvic nodes seems a bit like closing the gate after the horse has bolted.

I do appreciate what you guys have said about the ct of the chest being overkill. My Urologist has been pushing a single course of chemo but I'm a bit dubious about this as I'm unsure if this will kill off a 5mm nodule. The last thing I want to do is allow any cancer cells to build up a resistance to platinum based drugs.

I am very tempted by the results achieved in the 2 course Carboplatin approach. For peace of mind (based on studies) it seems to be the most attractive option out there, however as above the question is whether it will kill off the 5mm nodule (if indeed this is cancerous). I'll have to wait to speak to my Oncoligist and see if I can talk him into giving me a PET scan. If this comes back clear subject to his advise I think I'll go down this road.

If a PET scan is unavailable or inconclusive I am minded to go for the wait and hope approach, because if this thing in my chest proves to be anything sinister, chemo seems to be the course of treatment to go for and I will have avoided the associated long term risks of radiotherepy and cancer resistance to platinum based drugs.

I'd just like to finish by saying what an inspiration you all are. I've sat up all night reading your stories and finding strength from your strength. God bless you all and thank you.

[Karen]

[QUOTE=Fish]-Karen, are you sure you aren't my long lost sister? -
QUOTE]

Jim, That depends...do you owe her money????

[dadmo]

Paul:
It seems like you may already be cured. I know you're worried about the lung spot but in the US about 10% of the population have random meaningless spot. In the Pittsburgh area it is even higher because of a mold spore that floats around. My son had lymph node invasion and lung spots and to this day the lung spots haven't changed, the experts think it's just residual thymus.

[Fish]

Hi Paul:

Yes, Karen and I do appreciate a bit of "deviousness" (Karen, are you sure you aren't my long lost sister? )
That's a fairly small seminoma and as Karen said, it would be extremely, extremely rare for seminoma to skip the retroperitoneal lymph nodes and go directly to the lungs. I have had a small nodule show up in my lung as well. They don't know what it is, but is got slightly smaller, so they no longer worry about it. This is a well established problem with chest CT's - they're TOO sensitive and pick up things that are of no concern. Many docs prefer a chest x-ray.

Your prognosis should be excellent. They will likely recommend radiation therapy (as a prophylactic measure) but you could also consider surveillence. That's what I'm doing. Let us know if you have any other questions or concerns.

Best wishes.

[Karen]

Welcome Paul,
I do like the STD trick to be seen.....Fish can add that to the "crawl into the ER claiming excruciating pain" method. Hey, ya gotta do what you gotta do.

The good news is the blood markers were clean, chest X-ray was clean, lymph nodes were clean and the tumor was small. CT of the lungs is overkill and can pick up things you may have had all your life that are benign. That's why a chest X-ray is th weapon of choice for lung imaging. Seminoma follows a rather predictible path from the testicle to the paraaortic lymph nodes before heading to the lungs. Other have posted here with CT detected lung things that have been nothing. It's wise to follow up. If you're too anxious to wait to see the oncologist for 2 weeks you should push for something sooner...sounds like you know your way around the system!! As you can see from this ste there are guys that had VERY advanced TC and pulled through strong. You will too, nver doubt that. Good luck and keep us posted!!

[Paul G]

Hi Guys,

My name is Paul Gorman and I've just had the bad news. About 2 months ago I noticed a firmness in my right testicle. When it hadn't disappeared a week later I went to my Doctor. He examined me and told me that it was nothing. That I should go away and come back in a month if it got any bigger.

Anyway I was moving home at the time and decided the doc knew what he was talking about and happily got on with my life.

Three weeks ago the lump was still there and had gotten marginally bigger so I decided to do a little research on the net. TC kept coming up so I decided to get a second opinion. I tried getting a new GP as I'd moved house but was told that I would have to book an appointment which could only take place after a medical with the nurse unless it was an emergency.

I explained that I had a lump on my testicle that had been seen by my previous GP. They asked what he had said and decided it wasn't an emergency and booked me a checkup with the nurse for 2 weeks time.

Not to be put off I went to A&E and after a few hours wait a Junior Doctor saw me. He examined the lump said it was solid and go and see my GP as he couldn't arrange an ultrasound. At this point I decided to re-read Catch 22, but being the devious git that i am I made my way around to the STD clinic and proceeded to gave them a story about a burst condom, pain when urinating etc.

I was given an appointment and the next day my lump and I turned up. I did the STD tests just to be on the safe side even though I didn't have any symptoms and showed the doctor my lump. She wasn't sure and called a consultant who arranged for an ultrasound.

Since then things have moved quite quickly. I had the orchiectomy last wed. CT scan yesterday.

Here comes the question:- Ultrasound showed a 18x13mm tumor. My blood tumor markers are all normal. Chest x-ray came back clear. Histology of the removed testicle shows pure seminoma with no testicular breach nor evidence of growth in the spermic cords. Blood tests show no vascular invasion. The rotational CT scan shows all clear in the lymph nodes and abdomen however a 5mm something has been found in my right lung though im told this could be nothing.

Anyone got any idea of my prognosis and how likely is secondary cancer in the lung given the above as i wont see oncoligist for a week or two.

Listen guys I sincerely wish you all the best of luck and thanks for reading.