RPLND Operation

Hi  and a warm welcome to the Macmillan Online Community but sorry that you needed to find us and I am especially sorry to hear about your diagnosis. I just dropped by and noticed you've not had a reply as yet, I'm sure someone will be along soon.

Although I had a different type of cancer, any cancer diagnosis brings many questions, lots of confusion and stress but talking with other people who are on the same type of journey will help you navigate this rollercoaster.

The Community is organised into dedicated support groups so can I see you have joined our supportive Testicular cancer group, this will be a good place to connect with others navigating the same type of cancer journey.

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Sending you welcoming hugs Bx

Hello again . Sorry,  I've just noticed you have already updated your profile. I hope someone comes forward soon to answer your post.

All the best Bx

Thanks

Hello, yes I had it in 2016 at the Marsden in Chelsea. I don't know your age, but I was told it's mainly a young man's complaint. I was diagnosed at the age of 68!  Stage three, right testicle tumour, two large para aortic tumours in my Peritoneum, about 16cm long, and eight smaller ones along my lower Aorta.

I had 4 cycles of chemo first, but only a partial result, so RPLND was offered by the Marsden.  I really can't say it was pleasant, sorry. They removed my right orchid first, (same op) and then attempted the major one. When I woke up, the nurse said all had gone well. I felt elated. Spent some time in ICU and then to a ward. Be prepared for pain, but you will get a button to press for a shot of strong painkiller when you need it.

Three days after my op, a junior doctor who was at the op( my surgeon never came to see me) told me all about it. He said my Aorta was too swollen and they couldn't remove any of the 8 reactive nodes that they could see. They cleaned up two areas where the large tumours had been. I was devastated.

This meant radiotherapy at the hospital where i had the chemo, The Maidstone hospital cancer unit. I had 21 days of radiotherapy, but although this may have cured me, it's caused havoc with my bowel. 4 years later i'm still having major problems. My legs aere also badly affected by the chemo. Lots of nerve and muscle damage. I sat in a chair for ten hours a day, so the blood stagnates in the legs, giving them a massive overdose of chemo. Should by laying flat on  bed really.

The fluid overload during chemo gave me an Aortic Aneurysm, due to the high level of cancer cell debris that had to pass through my kidneys, restricting my ability to pass urine, hence the overload of fluids that damaged me.

I'm not sure If I am cured yet, as my last ct scan and blood tests to see if had gone, was cancelled for two years due to the covid panic. I shold have had it in August 2020, but it was put off until August 2021, so a two year wait. Not good for the mental health ha ha

I wish you all the best, and usually the op goes ok. I was unlucky. At least I am still alive to see my Grandchilden etc. I am thankful for that.

All the very best. Mike.

Thanks westfieldmike for sharing your experiences with me. I'm 55 and was told the same that I'm old for this Surgery.  My diagnosis is Primary Retroperitoneal Seminoma Stage 2C (was told rare) so I've not got seminoma actually in my testicles just in my Lymph Nodes.  I've had 4 cycles of Carboplatin Chemotherapy finnished end of November and had several CT Scans and was told my lymph nodes had gone down but are still a substantial size. I was told I'm in Partial Remission. Then sent to see a surgeon at St James Leeds on Monday and was told I needed RPLND as they can't  be sure there isn't a teratoma in my lymph nodes due the type of biopsy I recieved before my treatment 

 How long were you kept in hospital? I was told between 7 to 10days ?

Thanks again very informative and I hope you get the all clear when you eventually get your CT Scan.

Barrie 

Hi Mike my name is Barrie my RPLND Operation and Chemotherapy are all at St James (jimmys) Leeds. On Monday Surgeon told me earliest time for my Operation would be June then when recieved copy of appointment notes it said May ? .  I am awaiting official date ?. I was told if they were 100% certain it was just Seminoma in my lymph nodes then I could be on Surveillance  but and a big BUT there could be other Cancer in there so OP it is and to be honest I  just want the Cancer out. I'm on active surveillance for another Cancer Gleason 6 Prostate Cancer as well since 2018 which is under control at the moment. I do feel apprehensive about Operation. Don't want epidural as had disk Operations previously.  It does help to hear from somebody who has gone through it. Was given pamphlet with everything on plus photo of incision.   Doesn't look pleasant.  Thanks for your honesty.   At minute doing a lot of walking and thinking with my two dog's a whippet and a english Springer. 

Cheers Mike

Regards Barrie

I have a Whippet!  He got me through the hard times getting back to walking after chemo. Lovely dogs. I wouldn't have had the excercise if it wasn't for him.

No it isn't pleasant, but looking back, I would rather have surgery(that worked) than aggressive chemo again. I got over surgery much faster than the chemo. sometimes, 5 years later, I can still think I smell the chemo in the middle of the night. Us cancer sufferers all know about the middle of the night ! Even now, my brain soemtimes re-runs some of the treatment. I had a biopsy needle inserted into my back, into a tumour behind my stomach. I was awake, and lying face down on the ct  scanner. They pushed the needle in a little way, and then back into the scanner to see where it was. Back out for another push, and so on for about 15 minutes, The last push into the tumour made my toes curl! Such fun...The worst memories are still chemo though.

Mike

1. The biopsy you described was done before I was diagnosed.  I had it done twice and stayed overnight in hospital each time.  First biopsy they only found necrotic tissue (dead) second time Seminoma.  Chemotherapy was Carboplatin AUC10, steroid injections in my stomach after each cycle for 10 days, as have other health issues .  Had a few side effects and a couple of stays in hospital but overall felt ok through 4 cycles of Chemo. Main side effect was constantly feeling Knackered and poor sleep and that's just starting to go as Last chemo was November. Hope op date in post soon as just want to get it done and hopefully get on with my life.

Love taking dogs out to destress over fields.

Barrie

It's done then!   Just like mine, although mine has faded away a lot. Well done mate. Take it easy.

Mike.