Waiting for CT Scan Results

[phil63]

Hi everyone. So glad to find this site. It makes things much easier hearing from other people who have experienced this.

My story so far:
Age 49 based in UK.

I noticed that my right testicle started feeling hard, I thought it was probably something that would clear up and I forgot about it for a while. About a month later after no improvement I decided I should get it checked. By this time it was also starting to feel a bit painful too.

6th June 2012: Saw my GP. I was shocked when he said he thought it was a tumor. He made a request for me to see a Urologist urgently.

14th June 2012: Had an ultrasound and then saw the urologist. He said he was 95% sure it was tumor and that half my right testicle wasn't working anymore. I agreed to have my right testicle removed the following day. After meeting with urologist had a chest xray and bloods.

15th June 2012: Testicle was removed. Was told chest xray was clear.

19th June 2012: CT scan of thorax, abdo and pelvis

25th June 2012: Called TC Macmillan nurse dealing with my case and he said that the result of the biopsy was Seminoma and that my blood results were clear.

Now waiting for results of CT scan to see if any sign of spreading. The nurse said that in 80% of cases where the tumor is a Seminoma the CT scans show no spreading.

I have an appointment in Birmingham with Prof Cullen's Oncology Team on 10th July. From my research they seem very experienced. They have dealt with 1024 TC cases over the past decade. And currently see about 150 TC patients per year. So hopefully I'm in good hands. Should I be doing anything else at this stage?

Thanks
Phil

[frank1980]

Hi Phil and nice to meet you!

I have read your story and I understand all the doubts that come in our minds when we are waiting for a scan result, especially for the first time. I remember also when I had my surgery four months ago, I had the results of the pre-op Ct scan immediately and were ok, but I had to wait for some days to know the result of the histologic path report. And a lot of questions started to run into my mind. Would it have been a seminoma or not? Would it have invaded my body or not? And so on...

Anyway, if I can help you, I would like to say a thing to you: if your chest x-rays were clear, and also your blood values were not altered, you have a good chance that the tumor is a seminoma and that didn't spread. Of course, the only thing that we can do is to hope for it and that you already are out of danger with the surgery! This is what I sincerely wish to you!

Stay strong and positive!
Frank

[Davepet]

Sorry you need to be here, but welcome to the forum!

Should I be doing anything else at this stage?

Not much else to do at this point except wait. I'm afraid waiting is a big part of the first steps with TC.

If your CT comes back clear you'd be a good candidate for surveillance, you may be offered other options such as radiation or a lite dose of chemo, dependingon your doc.

Keep us posted,

Dave

[phil63]

Frank & Dave, many thanks for the feedback and the positive words. I'll post again when I get the results.

Thanks
Phil

[Grump_uk]

Hi Phil,

From what you say it sounds as though things are moving along reasonably well -- although we all know from the inside it seems really slow and is agonising at times. I am seeing Andrew Protheroe at Oxford who closed together my early oncology reviews as the referral to him had been delayed.

For me knowing about what was happening and taking control "owning the cancer" has been a benefit and every doctor I have met so far has advocated it. Being here certainly helps on that. I have my own copy of most test results, the oncologist always sends me copies of his clinic reviews etc (when I asked about something in one that turned out to be a typo he said it was really great when patients read them and asked questions as they know about themselves probably better than anyone).

Peter

[phil63]

I've just had my CT results - all clear. Also got the size of the tumor: 42mm 30mm 25mm (90% of testicle).

The nurse said that they will probably advise a one off treatment of Chemo. Before this I have to have a kidney test.

Should I consider / ask for another option? For example just surveillance? The nurse said the side affects of the one shot chemo is very minor.

Hi Peter, thanks for your reply. We seem to be in a similar position re type of tumor and size. I'm not sure what LVI or RTI are though and how those affect treatment. May I ask what treatments you were you offered? And why you decided to go with the one you did?

Really like to hear from anyone else who was in a similar position or has views re my tumor and treatment options.

Thanks
Phil

[frank1980]

Hi Phil,

I think that you are in a good position. The tumor is a seminoma and the Ct scan came back clear, and so did the blood tests. If I don't remember wrong, having a tumor that exceeds the length of 4 cm could be considered as a risk factor (together with the lympho vascular invasion and/or the rete testis invasion) and so, in these cases, the doctors strongly encourage you to have an adjuvant treatment. You can also choose the simple surveillance, the question is a matter of numbers, the official statistics say as follows:

With the simple surveillance you have the 85% probability to be cured (the orchiectomy has solved your problem)

With a one single chemo shot of carboplatin or a low radiation therapy, instead, you will have the 95% probability to be out of danger.

Personally, I was friendly and strongly encouraged from my oncologists to have a single shot of carboplatin. They explained to me that I would have also chosen surveillance, and that on a count of 15 persons that chose a carboplatin shot or a low radiation treatment, after the five years that are considered as the out of danger period, only two of them really needed those treatments and the other 13 were cured yet with the only surgery. But it's logical that we can't say before if we need the treatments or not. Personally, I suggest to you as a brother and not as a friend to have a single carboplatin chemo shot. It lasts two or three hours, and can solve the problem forever. Trust me!

All the best!
Frank

[phil63]

Hi Frank,

Many thanks for your detailed feedback. Very much appreciated. At the moment I'm definitely leaning towards the Chemo.

One thing I forgot to mention is that nurse said the one shot of Chemo will provide better protection for the other testicle as the Chemo goes everywhere, but the radiotherapy only would go towards the abdomen.

Thanks
Phil

[Davepet]

One thing I forgot to mention is that nurse said the one shot of Chemo will provide better protection for the other testicle as the Chemo goes everywhere, but the radiotherapy only would go towards the abdomen.

I believe the nurse is incorrect. TC doesn't transfer from one testicle to the other. In guys like me who get TC twice it is considered a second primary cancer.

You will find folks on this board who will weigh in on both sides of this question. Personally, I'd take my chances with surveillance. 85% odds of being cured are pretty high so why put your body through treatment that may not be needed? In the event you are not cured right now, your odds of a complete cure are the same with 3xBEP later.

The big difference is a quick dose now or a full 3 courses later *if* you are unlucky. You also need to consider how certain you feel about being cured now & how anxious you might get approaching each surveillance scan.

Every guy is different about these things & only you can decide what is best for you.

Hope that helps,
Dave

[Paul54]

One thing I forgot to mention is that nurse said the one shot of Chemo will provide better protection for the other testicle as the Chemo goes everywhere.....

There are some studies of carboplatin efficacy, including some by Dr. Tim Oliver in the UK who "invented" its use, that indicates a slight but significant reduction in the probability of a second TC primary, i.e., in the "contralateral" testis. Dave is correct in that TC is not known to spread from one to the other. The theory is that the conditions that existing in the first also exist in the second is a certain number of guys. Carboplatin probably inhibits or destroys mutating germ cells before they have a chance to reach critical mass to develop a self-sustaining tumor, just as it would to cells from the primary that are roaming in the lymph or vascular system. I will try to find the stats, but they basically say that the chances of a second TC in general are 3-4% but that adjuvant carbo reduces that to 1-2%. I also believe those results were with two doses.

[Scott]

...a slight but significant reduction in the probability of a second TC primary, i.e., in the "contralateral" testis.

I'd note that there is disagreement on that point, for example: http://jco.ascopubs.org/content/29/21/2944.full

In his reply, Dr. Oliver noted, "...it remains possible that we are seeing a delay and not prevention."

[scozzie]

Hi Phil
Your case is very similar to mine, I had my left one of about 3 weeks ago, the pathology came back as stage 1seminoma, I had an 11mm, a 5mm and a 3.5 mm tumours. My ct was clear and blood markers all good.
I had my oncology appointment at the start of this week, she went into great detail with the difference between having the carboplatin or the radiation therapy and the possible long term consequences of both I opted for the carbo after waging up the treatment times and after spending hours going through all the personel accounts of the side affects on this forum. Before I had the appointment I was thinking about just going straight to survailance,but while I was in the oncology waiting room it just began to hit me that I actually had cancer, and that made my decision for me, I decided I wanted to try what i believe to be the most aggressive way to burn this sucker out of my body.

Col

[phil63]

Hi everyone, just had a bit of bad news. Yesterday the nurse told me my CT scans were clear based on what the original hospital that did the scans said and what he thought when he looked at them yesterday.

This morning the oncology team at Birmingham looked at them and noticed a 1.7cm lymph node. The nurse said anything above 1cm is a concern. He also said as he was looking at it while on the phone that he noticed another one in the same area. He also said that if it was 2cm they would start the more aggressive Chemo straight away.

As I had the CT scan only a few days after the op they want to wait until the end of July and do another CT scan to see if it goes down as it may be simply due to the op.

We went out for a meal last night to celebrate the clear scan too! A bit upset and worried at the moment as I was just getting my head round having stage 1 and a one off Chemo treatment.

Thanks for the support
Phil

PS: I also asked about spread inside the testicle, he said it was T1 which I think indicates no LVI or RTI?

[frank1980]

Hi Phil,

I'm sorry to read this news from you. Anyway, I hope for you that this "spot" that was detected by the doctors could only be a reflex or a shadow and nothing to worry about. Sometimes the Ct scans or the Pet scans can show some false positives, and this is what I wish to you with the heart! And I keep my fingers crossed for you that on the next Ct scan that you will have on the end of July it would have disappeared! Consider also that sometimes there are some reactive lymph nodes that shrink and become normal by themselves after a short time...

Stay strong and try not to worry! I know it's difficult but you can do it! Come on!
Frank

[phil63]

Hi Frank,

Thanks for your supportive post and private messages. It is very much appreciated.

Best Wishes
Phil

[cbvance]

I had an enlarged node on my first CT, I asked for a PET scan which actually detects if the node is cancerous or not. Fortunately mine was only a reaction to surgery hopefully yours will be as well. Either way, the cure rate is still very good for seminoma even with mets to the nodes.

[phil63]

Hi cbvance, thanks very much for your feeback. I didn't know a PET scan could be used to determine if the node was cancerous or not. This type of scan has never been mentioned to me by the Birmingham UK team looking after me. Perhaps this is something used in the US more than the UK? I will ask if this is a possibility. I'd certainly like to find out now rather than wait till the end of July for a CT scan.

Thanks
Phil

[davidhanson90]

Hey man,

I had a node scare at the beginning too. 1.7cm node which turned out to be nothing. But I think it's worth asking for a pet scan. I'm in the uk and the Marsden have never mentioned pet scans to me before but I'm sure they must do them as they are a very good indicator of active cancer. I'll also just add that sickness can also cause emlarged nodes.

Speak to your doctors about it. Also as your seminona you could ask about the use of MRI over ct scanning. I'm going to be asking about that next scan as I had a ct yesterday and they give me the willies!

[phil63]

Hi David, thanks for the info on your lymph node which was also 1.7 cm. Perhaps mine will turn out to be nothing sinister too. Also thanks for the heads up on the MRI scan. I presume they are safer as they don't use radiation. I wonder why they don't use MRI as the default scan for Seminomas?

Thanks
phil

[davidhanson90]

Well the Marsden have been doing an MRI trial for all stage 1 seminoma patients for about 2 years. The reason ct scans are still popular is firstly they are cheaper, secondly quicker and 3rd a lot of doctors aren't sure how to read MRI data yet.

I think MRI is gaining favour however and as stage 1 Seminoma has excellent prognosis it's less risky for them to adopt.

I was told that ct scans post surgery can often have enlarged nodes as there can be slight infections from having been opened up etc. Your next scan should help clear this up.

It's not common to have tumour markers with your pathology so unfortunately it's wait and see.

[Davepet]

Well the Marsden have been doing an MRI trial for all stage 1 seminoma patients for about 2 years. The reason ct scans are still popular is firstly they are cheaper, secondly quicker and 3rd a lot of doctors aren't sure how to read MRI data yet.

I think MRI is gaining favour however and as stage 1 Seminoma has excellent prognosis it's less risky for them to adopt.

I was told that ct scans post surgery can often have enlarged nodes as there can be slight infections from having been opened up etc. Your next scan should help clear this up.

It's not common to have tumour markers with your pathology so unfortunately it's wait and see.

That got me curious so I searched on " MRI vs CT " & got these results:

http://www.ehow.com/about_5410284_cat-scan-vs-mri.html

http://www.ct-scan-info.com/mrivsctscan.html

http://www.diffen.com/difference/CT_Scan_vs_MRI

http://www.ct-scan-info.com/mri.html

Afraid I don't know what to make of all that, seems like MRI is better at soft tissue & CT better at bones & cancer, but doesn't' seem to be a hard & fast rule yet....

[phil63]

Dave, David

Thanks for all the useful info.

The website and particularly this forum is proving to be an invaluable resource for me.

Phil

[phil63]

I've now had my second CT scan - eight weeks after the op.

The first scan was done just a few days after the op. The node of concern is 12mm (not 17mm as I had originally been told or misheard over the phone). Anyway, I have now managed to get hold of the first scan report which said: "Findings : There are several small left para aortic lymph nodes measuring up to 6mm all of which are non pathological. The only area of concern is a 12mm aortocaval node which is of concern as it is in a typical distribution. I therefore recommend close observation of this site. "

The second scan hasn't been looked at by a radiographer yet, but the TC nurse has looked at it and can't see any change i.e., lymph nodes are the same size as they were in the scan 7 weeks ago. He thinks surveillance may be the best way forward at this stage. Hopefully get more info from consultants shortly.

What could cause a node to remain enlarged for 8 weeks after the operation besides cancer? I haven't had any colds or other illnesses recently that I'm aware of.

I am a little over weight and had a very bad glandular fever (mono) many many years ago as a teenager. Could either of these cause an enlarged abdominal lymph node?

Appreciate any feedback or thoughts you may have.

By the way, I know I keep saying it, but this forum is fantastic. The collective knowledge and support is so valuable for anyone going through this.

Thanks
phil

[phil63]

Hi everyone,

Haven't been on the forum for a while, but just an update to say I've had a scan at the Royal Marsden today. There was a questions mark over an aortocaval node after my scan 3 months ago. Hopefully it will be an all clear when I get the results next week. The only eventful point of the day was getting the cannula fitted before the scan - I have very uncooperative veins and it must have taken the nurses a good ten minutes. They wanted to make sure it was fitted properly and flushed it several times to check, which is fine with me.

Phil

[ukboyuk]

It seems you're in very good hands. At least at RM they don't make you drink that nasty contrast

By the way, you are now onto surveillance in case you have not been told. The window for having adjuvant chemo has now passed. No big deal, adjuvant chemo doesn't offer any guarantees. It basically cuts your small chance of relapse by around two-thirds or three-quarters if memory serves me correctly. Something like 15 to 20% down to 5%.

Many of us here are also on surveillance.

Keep us posted.

[phil63]

Hi ukboyuk,

Yes, everyone I've met at the RM has been great. The three world class TC specialists in the TC team make me feel in very safe hands. I have to travel quite a distance to get there, but I'm more than happy to do so. They did give me the option for the one shot of chemo back in August, but I chose surveillance. I've quite successfully put the cancer to the back of my mind since August, but for at least the next week I'm going to be thinking about it more.

Thanks
Phil