Diagnosed with Kidney cancer

[Catty]

Friday 13 November I was diagnosed with kidney cancer. I had pain the night before and was lucky enough to get in to see a doctor who examined the area I had nicknamed “stabby mcstabbyface”. She thought maybe gallbladder and sent me straight up to the hospital. I had bloods taken, an ultrasound and then a CT. Then when I had been moved out of emergency to an interim area and was trying to go to sleep for the night, the doctor came in and gave me the results. I tried to cry but the pressure on my lung moving was causing pain to the area that my 14cm by 12cm mass was. It wouldn’t even let me be upset! 
Another CT scan of my lungs and a few days later I was sent home. I’ve had a few meetings with doctors and surgery is planned for mid December. 
I almost feel like a fraud and I think that is why it’s taken me a while to want to put my story here. I feel like I am just having surgery to have a kidney removed. I don’t need to have any chemo or radiation treatment afterwards and while I am extremely anxious and scared of the surgery to come and that it’s so close to such vital veins etc, I count my blessings as well and send love and blessings to everyone here. 
I also wanted to say that the cancer councils booklet on kidney cancer has been amazing. It has explained a lot to me about the process and journey I am in. 

[sch]

Hi,

I'm sorry to hear about your cancer.

It's a terrible thing to go through even if your treatment isn't extensive. You are allowed to feel upset about what is going on.

If you read through the stories on here you will find stories from all experiences, from stage 1 through to people who are stage 4 and terminal. This is the way it is, and everyone deals with it differently.

Which state are you having your surgery in?

Good luck your surgery. The surgeons are very good at what they do. You will be fine.

-s

[Budgie]

Hi @Catty,

I'm sorry you've been diagnosed with cancer, but that doesn't mean you can't continue to live life positively, especially since you won't be needing chemo or radiation. That's fabulous news! Dont be scared about the surgery as I'm sure you'll be fine. If the kidney is really big, they may take it out through the front rather than the back, which I found was good when they took mine as I could sleep on my back with no problem. I actually used a wedge pillow after surgery, as that was much more comfortable. The main thing is you need to remember to drink plenty of water. As you'll only have one kidney left, it will need help in flushing out the toxins. Drink at least 2 litres a day, but try for more. During summer, I will drink around 5-6 litres a day. Take a bottle of water with you everywhere you go.

I wish you all the best for your surgery, & please ask questions if you need to.

Budgie

[AlfHam]

Hi @Catty 

It can be a real shock to be told you have cancer. Hang on in there!

If it can be removed by surgery and you don't need any more treatment, then you're off to a good start. If you're otherwise healthy ,you'll be out of commission for a little while, have to take it easy for a bit more, but then you have a pretty good chance of getting back to a very similar life to pre-cancer times.

It's a big operation, but one that Urologists carry out regularly, so you'll be in safe hands. There are a few people here who have gone through radical or partial nephrectomies, so feel free to ask any questions.

Good Luck!

[Catty]

Thanks everyone for the support. I’m actually in Darwin so the surgery is here. Years ago we had the saying that if you needed surgery, get on a plane! I have belief in my surgeon, just I feel unsure due to this being a “major operation” the size of my tumour (about 15cm) and just not knowing I guess if my surgeons experience in having dealt with a tumour that big etc. 

throw in that I had a pre admission interview mid week and the fact that I get night sweats (I put it down to hormones being a middle aged woman) had me sent off for a COVID test (luckily it hasn’t been a factor really in Darwin, but really didn’t need the extra stress!)

I have to decide on pain relief options for after surgery, I’m not sure if that is common or covered in any cancer council publicans but it is between a thoracic epidural or rectus sheath catherter. 
does anyone one have any advice or experience on this?

[Budgie]

Ah, I was living in Darwin when I was diagnosed. Phil Carter was my surgeon, & was good, but I heard he's recently retired.

In regards to pain relief - I was never even offered either of those things. I'm pretty sure I had Targin & Endone. I was certainly never offered a thoracic epidural. Either way, I'd do some research before you decide.

Good luck with your surgery Catty.

Budgie

[Catty]

Just letting everyone know that I had surgery and am now in recovery. I went with a thoracic epidural as it seemed to cover more area in terms of pain relief. There were problems in surgery and I lost a lot of blood and needed a transfusion. Initially the pain relief wasn’t working and the first night was pretty horrendous but after that and the correct medication I have done better. I have been out of bed twice and it’s been a struggle with dizziness and nausea. 
I just wanted to thank everyone for their thoughts wishes and advice 🙂 

[Budgie]

I'm very glad you've had the surgery - its now over & done. I wasn't going to tell you before your op because I didn't want to worry you, but during my nephrectomy they nicked the adrenal vein & I also lost alot of blood. I didn't need a transfusion tho, thank heaven. Now you need to concentrate on your recovery. Remember to cough as often as comfortable & deep breathe as often as you can. I wish you all the very best in your recovery & remember to ask if you need any advice. Take care Catty & try to have a good Christmas.

All the best
Budgie

[Catty]

Budgie, thanks so much for your comments. I was concerned about accidental nicks etc. the docs also said too much touching the bowel can be an issue but I dont think I had that.

i don’t feel too bad, not much pain but a lot of head dizziness which affects my confidence!

I’ve been practicing the lung physio tasks so fingers crossed I’ll be out in the next day or two so home for Christmas. 
I appreciate your comments, you have a fantastic Christmas too! 

[AlfHam]

Hi @Catty 

Glad to hear you've had your surgery.  The surgical pain went away for me pretty quickly.  The worst thing was the catheter!  I felt nausea from the morphine they gave me in ICU,  but they changed me to fentanyl after I told them about it and it went away. 

You'll need to take things very easy (but do make the effort to walk short slow walks regularly.) this will last for a week or two,  then you'll feel a good bit better... But remember and don't do too much too soon!  I found it easy to push myself too much and soon realized little and often was the key.  Immediately post op,  the deep breathing exercises are really important.

I was moved on to Palexia for pain relief which I stopped maybe a week after going home. All things going well,  the pain should settle down.  Six months post op I now get the odd twinge at my operation scars if I lift something heavy (25kg+) or do a lot of lifting over a short period.  I have no nerve pain and haven't needed to take any pain killers since I stopped the Palexia. My tumour was a lot smaller than yours,  so you had some different logistics going on and things were probably moved around a fair bit,  so you can expect some discomfort.  It will go away though and then you can focus on getting back to full fitness.

When you say dizziness,  is it a lightheaded feeling or full on vertigo (you literally feel as though you are tumbling head over heels)?  I had vertigo post op a few years ago when I had back surgery., when I got up or lay down,  the whole room would spin.  The cause is lying down too much and you need physio to fix it...the crystals in your inner ear that give you balance go into the wrong part of the ear and you need to do very specific head movements to fix them.  One session with physio then practising at home fixed me that time. 

It's hard to stop yourself sometimes,  but remember you've just had surgery.  You need to avoid lifting anything for a while.  I think I was 2kg Max for 6 weeks,  then 10kg for another 6 weeks,  something like that.

Good luck with the rest of your recovery,  and do share your progress!