RPLND after 10 years of all clear

[benjd84]

Hi,

Quick introduction! I live in England within the UK.

In October 2003 I was diagnosed with a mixed germ cell tumour in my left testicle (MTI, Seminoma and Yolk Sac Tumour). I had a left radical orchidectomy and then 3x BEP shortly afterwards because it had metastasised into my lymph nodes. In March the following year after a period of surveillance I was declared to be in the all clear!

I followed the standard practice of blood tests and chest x-rays until the middle of last year (2012) when my AFP count started to rise very slowly. I had a chest x-ray which was ok, however every month the AFP increased by a tiny amount. Early this year my oncologist said that if it went above 8 then I will have a CT scan as soon as possible, which in August it did, so a CT scan was subsequently carried out within a week. It then took me just under a month of chasing every few days to get the results back.

The CT came back as showing enlarged lymph nodes in my abdomen, unfortunately I didn't get the number or size of them from the consultation and can't provide it here until I am able to get some firm figures back. At present my AFP is now just over 10.

It was decided that the best course of action would be for me to have a RPLND and then have the nodes checked over in the lab to ensure everything is fine, the likelihood that I would need chemotherapy again is low according to my oncologist.

I was referred to see a consultant urologist at another hospital and then had the consultation at the end of November where he concurred that I should have surgery as a matter of urgency and that I will be having it before the new year, indeed he marked "urgent" on the booking form. I then wait 2.5 weeks for my pre-op to be advised by the nurse that I will now have an 8 week wait for the surgery. This concerned me as it is different to what the consultant said, as what was referred to as "urgent" seems to now be handled in a routine manner.

When I got home I called the appointments officer, who tersely advised me that other people are in the queue for surgery too and that a letter will be sent when I am to be called. This left me somewhat shaken.

Is my planned surgery "urgent" after all? Especially as I feel that I have to chase everything.

I know RPLNDs are very rare in the UK, and none of the staff with the exception of the consultants seem to have a clue about it or what is involved (however I have found plenty of excellent resources on the cancer research/macmillan websites etc).

Is there anyone else here in the UK on this forum who has had a RPLND such a long time after being given the all clear like me who I can speak to and share experiences with?

Many thanks.

[Davepet]

It is highly unusual o get a recurrence after 19 years clear. Has his remaining testicle been checked with an ultrasound?

[benjd84]

Hi Davepet,

I've effectively been in the all clear since March 2004 just under 10 years. Earlier this year as part of the investigation into why my AFP levels are rising I had an ultrasound of my remaining testicle which is fine.

So its just the rising/elevated AFP levels and enlarged abdominal lymph nodes for me at the moment. I'm going to see my GP later to have a chat and find out if we can get some more information and speed this up. I don't know why but for some reason in the UK (another poster has mentioned this too) patients here aren't given any detailed information about their histories or current situation. Everything is presented in a very basic fashion here.

[Davepet]

Sorry about the typo, I was trying to type 10 years but fat fingered the keyboard i guess.
I'm glad to hear your survivor has been tested & is fine, but that really puts you at odds with the statistics, since recurrences normally happens in a year or two after dx.

I have no knowledge of the UK healthcare system, so I cannot comment on the delay in your surgery...

Dave

[benjd84]

Haha that's ok

It's just frustrating as I don't know where I stand and as you say the statistics show recurrence within a couple of years.

Just a case of waiting for them to take action and keep reminding them that I am here and not to forget about me!

[lycra]

. I'm going to see my GP later to have a chat and find out if we can get some more information and speed this up. I don't know why but for some reason in the UK (another poster has mentioned this too) patients here aren't given any detailed information about their histories or current situation. Everything is presented in a very basic fashion here.

You can ask at clinic for a copy of your GP letter,you are entitled to do so.
Also,you can request access to your hospital notes.
If still not happy, you canuse your hospitals patient advice/liason/complaint route.

PM me if you want further Info, I am UK based with comprehensive experience of how the NHS works.

All the best,
Lycra

[benjd84]

Hey lycra! Thanks for your reply.

I spoke to my GP earlier (he has so far had nothing to do with this as I was originally admitted through A&E who referred me to oncology; then subsequently never discharged).

We spent a good 20 minutes together chatting about my recent experiences and he said that from the date of referral I should have had treatment started within 6 weeks (i.e. the RPLND surgery). This is due to it being a suspected cancer recurrance that cannot be discounted until the lymph nodes are examined in a lab. He said that almost 8 weeks has passed since referral, and a further 8 weeks waiting for surgery simply isn't acceptable.

He is going to chase this up with the hospital to try and get a firm date for my op ASAP, and he will get back to me no later than Friday to let me know what is happening.

We pored over the recent medical notes on his computer and unfortunately a copy of the CT scan isn't available to him, and the letters to the GP either state "a sold mass" or "enlarged lymph nodes requiring RPLND". So at present the extent of the problem isn't really known and again this is going to be made clear to me.

[lycra]

[QUOTE=benjd84;181733]Hey lycra! Thanks for your reply.

You know how to find me now-you have a pm.
I see my surgeon to get a date for my RPLND tomorrow.

All the best.
Lycra.

[benjd84]

GP called me back today and advised that he has been given same feedback as me - there are too many people awaiting operations in front of me and my case is simply a lower priority. I can totally get and understand this; but its the conflicting information which different staff give me which is causing my gripes - not forgetting to mention Mrs Unhelpful Secretary!

Neither of us are sure why it has been emphasised to me that it is urgent, with the subsequent actual lack of apparent urgency being taken. As I haven't had an AFP done in months he has given me a blood form that I got done at the hospital straight after which I will get back early next week. He says if its gone up more then it should help persuade getting surgery this year. Still none the wiser as to how many nodes are expanded and what size but again he will give this info on his next call back to me.

[John24]

Hi
I'm angry on your behalf!
There was a huge stink in the press a few weeks ago about Colchester Hospital fiddling figures for cancer patients. (Google it)
From day of referral to treatment in NHS for suspected cancer is 62 days. Not 2x8 weeks. These are national guidelines.
I was treated at Norfolk and Norwich Hospital, not far from you. Ask to be treated there if your local hospital is busy. Or royal Marsden in London.

If it is suspected you have recurrence of cancer as you suggest, I would start complaining high up in the oncology dept and pointing out the failure to follow national guidelines and do they want to be the next Colchester?

Good luck

[benjd84]

Hi john24,

I honestly don't think its a cover up like what happened at Colchester

I suspect its more of a case that I don't fit into the standard treatment pathway, so its a bit more ad-hoc.

GP has called me back and has it in hand trying to chase up for me, will get feedback next Wednesday.

[benjd84]

Hi all. Felt like it would be worth putting an update on since opening this thread almost 5 years ago.

The above mentioned surgery was carried out in January 2014 but had another recurrence a year later which was removed along with radio in the area as a precaution.

The main reason for this particular posting though is that it since came back in 2018. Again, I have had surgery to remove it but this time I lost my left kidney, adrenal gland, spleen and part of my pancreas. This is because it was all stuck together. I'm now effectively back in the 'routine' position of having scans every so often - with the surgeons telling me that they will operate if it comes back again. I guess that at least they have been able to reuse the same cut across my abdomen each time so I am not getting a collection of scars cris-crossing!

I am absolutely terrified of it returning as I do not know if my body can cope with being opened up and also how much more it can deal with having 'stuff' taken out of it. I find myself completely unable to think about anything other than it coming back and having to deal with more painful surgery. I used to take sertraline, but I honestly don't think that will help me with the way I feel now. Does anyone have any advise on what I can ask my doctor for, in a bid to improve my mental wellness and to stop with the random bouts of tears?

[mcintoda]

Have you checked your testosterone/hormonal levels?

[Davepet]

What was the pathology report on the nodes removed? Did they follow up the surgery with chemo?

Dave

[sayhey]

Dave is right. I think the pathology here is important. Your original tumor had malignant teratoma intermediate (MTI) which would explain the spread and lack of response to chemotherapy, if that is what the removed nodes had.

I'm sorry you've had to go through all of this, and hope you are done with surgeries and treatment and in the clear.