topic Re: Diagnosed with Kidney cancer in I've just been diagnosed

Diagnosed with Kidney cancer

Catty — Sun, 06 Dec 2020 07:09:38 GMT

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.

Re: Diagnosed with Kidney cancer

sch — Sun, 06 Dec 2020 11:21:07 GMT

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

Re: Diagnosed with Kidney cancer

Budgie — Wed, 09 Dec 2020 00:05:49 GMT

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

Re: Diagnosed with Kidney cancer

AlfHam — Thu, 10 Dec 2020 13:51:55 GMT

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!

Re: Diagnosed with Kidney cancer

Catty — Sat, 12 Dec 2020 09:06:52 GMT

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?

Re: Diagnosed with Kidney cancer

Budgie — Sat, 12 Dec 2020 10:05:19 GMT

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

Re: Diagnosed with Kidney cancer

Catty — Sun, 20 Dec 2020 06:39:03 GMT

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 🙂

Re: Diagnosed with Kidney cancer

Budgie — Sun, 20 Dec 2020 06:51:20 GMT

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

Re: Diagnosed with Kidney cancer

Catty — Mon, 21 Dec 2020 11:08:10 GMT

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!

Re: Diagnosed with Kidney cancer

AlfHam — Mon, 21 Dec 2020 12:02:18 GMT

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!

Re: Diagnosed with Kidney cancer

Catty — Thu, 24 Dec 2020 01:51:57 GMT

Thanks Alfham for that insight on what you experienced. It has been very helpful. I wasn’t given any advice on lifting things and their weight but it’s so important to know.
the dizziness I had was sort of between the two you described, where I would see things moving but was not a full blown vertigo (I had one years ago and these weren’t as bad) but you are right, definitely down to the laying in bed.
I got out of hospital yesterday and am happy to be home.
I did have a very bad sleep last night where my back was just so uncomfortable and I woke every 2hrs. I had 2 paracetamol and 1 Tramadol before bed then 2 more paracetamol at 2am. Maybe it’s having a flat bed and not the magical hospital beds that bend!

Anyway do you or anyone have experience of numbness across the area? Basically half my stomach and around the right side and right groin area are all either numb or tingly. The doctor did say I have lost some nerve endings hence the numbness and it will always be like that which is a bit worrying as it’s such an odd feeling and I’m concerned the areas that are tingly may always be like that, which I cannot handle and wonder if there is anything that can be done. It may just be time, it’s only 1 week after all!
thanks 🙂

Re: Diagnosed with Kidney cancer

AlfHam — Thu, 24 Dec 2020 07:31:53 GMT

It sounds like your surgery was bigger than mine. I have an 8cm scar that is a vertical li be from below my belly button and around it. I have a small scar just below my sternum, an other at the bottom left of my abdomen and a drain was out in for a few days mid way between those two.

I have numbness around my belly button. It doesn’t really bother me...if anything it means I am less ticklish! You get used to it. I don’t have any pain from my wounds now, and didn’t really have much to be honest. I know that you can get an itching sensation as part of the wound healing process. I had this a little bit. It does settle down after a few more days. You are still early on in your recovery, and it sounds like you have bigger scars, so try not to worry, and focus on making yourself comfortable, doing any breathing exercises you’ve been given and sticking to the level of physical activity you’ve been told you can manage.

Re: Diagnosed with Kidney cancer

Budgie — Thu, 24 Dec 2020 08:17:56 GMT

Hi @Catty,

The numbness is normal, but nerves can take months to years to heal when they're damaged. Sometimes they don't recover. Once your scar has healed enough, to get rid of scar tissue, massage the scar every day; knead it between your fingers & if you want the scar to disappear, use Vitamin E oil on it daily. It takes a long time but it does work!

I hope you have a comfortable & merry Christmas & New Year with your family if you can get together. 🌲🥳

Budgie

Re: Diagnosed with Kidney cancer

MyheroCoolSpy — Wed, 30 Dec 2020 02:42:27 GMT

I pray for your recovery soon

Re: Diagnosed with Kidney cancer

Catty — Sat, 23 Jan 2021 06:36:35 GMT

I hope everyone managed to have a nice Christmas and are rejoicing in the New Year.

Well it’s been nearly 6 weeks since my surgery. It’s been a bit of a roller coaster. A few days after being discharged I was vomiting bile and dehydrated and ended up back in the ED overnight. I was fine the next day. When I felt I was able to travel (manage the 3 hr flight and the 3hr train trip) I went to QLD.
my inside area where the kidney used to be has been quite painful, both on the front inside and back if that makes sense, but found a hot water bottle was a blessing on the back. I can roll onto my side while sleeping but now am experiencing this inside pain with my stomach shifting. Really the only comfy position is on my back which ends up not comfy for long! The recliner lounge chair has been very comfy though! I have a follow up appointment in a few weeks so will have to head back to Darwin for that.

The doctor rang the other day (first time I’ve heard anything from them since leaving hospital) and was saying how it was a very aggressive cancer, I’m not sure if he said it was a grade or stage 4, I was a bit overwhelmed but will check at my appointment. He said that they took my appendix out as it had a 1cm growth in it but it turned out to be a bit bigger when it was actually out. They had not even mentioned a growth in the appendix prior to surgery, or that they were taking it out. I feel very frustrated as I feel I am not getting the full information and am feeling quite scared if it’s that aggressive, if there is any still in me, or obviously the chance of re-occurance.
Sending out wishes that this year is going to be a good one 🙂

Re: Diagnosed with Kidney cancer

AlfHam — Mon, 25 Jan 2021 00:09:01 GMT

Hi Catty,

Good to hear from you, and sorry to hear it's been a bit of a rollercoaster. The physical recovery from surgery will take a bit of time, you had an organ removed and some pretty big surgery. The kidney took up a large space and your other organs need to settle and your body get used to how you feel. It will get better though, so give it time. Ask your doctor if there are any more exercises you should be doing, or go see a physio as there may be simple non-strenuous exercises that could help. I was getting tummy pain if I did too much, lifted something too heavy or carried something not very heavy, but for too long, etc. It was really easy for me to do too much and get a bit of pain. The pain also wasn't immediate, so I could find myself sore hours after doing more than I should've.

Stages and grades of tumours are two different things. Stage is about location/spread/size with kidney cancer. Grade is about how aggressive it is, how quickly it is growing. They can only really tell this accurately by doing a biopsy of the tumour and doing tests on the tissue. If they said is was Grade 4, then it was aggressive, growing fast...so you've had surgery to remove the tumour, this is a good start.

Whether it has spread outside of the kidney and how far it has spread determines the Staging. This is important in terms of what you should do next. Right now you don't really know what to do next as you don't know if you have any other small secondary tumours, or if you are all clear. You can do a full body scan which should pick up any spread. This scan helps you either put your mind at ease, or get a plan in place for further treatment if required.

I had a Stage 1a tumour, so smaller than yours, and Grade 3, so less aggressive than yours, but still more aggressive than it could've been. I decided to have the full body scan to put my mind at ease (and give a baseline for future investigations.) If I were you, I'd be asking for that to see if there is anything else there that isn't showing any symptoms just yet.

The scan I had was an FDG PET scan. They inject some slightly radioactive sugar solution into you, wait an hour while your body absorbs it, then scan you in a machine that looks like a CT scanner. Fast growing cells absorb more of the sugar, so they show up on the scan. It only takes an 1-1.5hrs and you can go home straight after, so if you want to have one, maybe phone your specialist can provide a referal (although I have no idea if you can use a referral from a doctor in one state at an imaging provider in another state??) I suppose what I am saying is, I wouldn't necessarily wait until your next appointment to discuss this with your doctor...you mentioned it's in a few weeks, so if you are in a location that has access to imaging, maybe talk to your specialist about getting imaging done. You might even find the doctor suggests waiting until your wounds heal a bit better for the imaging as healing tissue can also light up on the scan (my flu vaccination showed up as a hot spot on my upper arm!)

You're still recovering, but it will get better. You don't have to sit and worry in silence, so if you have concerns or questions, phone your doctor, even request a telephone appointment if they are difficult to get a hold of. Peace of mind is hugely important, so if you'd feel better knowing more, go find out. Another tip is, write down the questions you want to ask in advance. I did this, it seemed so simple but helped me make sure I got everything out of my consultations. The other thing to do is request copies of imaging reports from any providers you've been to. They should send them to you. You never know...the appendix might've been mentioned on a scan report! The flip side of that is you might feel better seeing, Pancreas OK, Liver OK, Gall bladder OK, etc.

Good luck and try not to worry (I know it isn't easy!)

Re: Diagnosed with Kidney cancer

Catty — Sat, 06 Feb 2021 07:20:13 GMT

So I guess I didn’t quite know what a roller coaster this was going to be. I had surgery and was happily recovering when I had severe should pain. Back into hospital and another CT scan and ultrasound showed a dark colour thing in my abdomen. As I was in a small town hospital I was moved to the larger Wide Bay Fraser Coast Hospital in Hervey Bay. The doctors spoke to the urologist back in Darwin who said it would be liquid pooling in the area and to drain it. The specialist was up from Brisbane and I was scheduled for that procedure but he wanted another ultrasound done.
The results from that have devastated

me. Yes there was liquid but there was also a small soft mass. I can’t believe that this is just 6weeks after surgery.
I’ll be having an MRI on Monday then the doctors need to plan the next step.
Given this has happened so quickly I obviously don’t want to muck around and if i need surgery or chemo or whatever I want it done ASAP.
mom devastated, sad, confused and just can’t believe it. I have amazing support from my friends. My elderly mum has been amazing, staying strong for me, driving 40 mins to sit and spend hours with me each day and I know it’s very early but given how quick this has happened I’m just lost. I stay strong for them but I just want to scream and cry and throw a tantrum that this isn’t fair. (It’s not fair for anyone and everyone here, whose stories I’ve read and those that show support).

Re: Diagnosed with Kidney cancer

Budgie — Mon, 08 Feb 2021 02:15:31 GMT

Hi @Catty,
I'm sorry the news wasn't good, but please don't despair. I was diagnosed terminal 8 years ago, yet I'm still here. There are chemotherapies that can keep you alive, if you have the attitude to go along with it. I take an oral chemo tablet every day & yes, I have to put up with some side effects, but I'm alive & extremely thankful for every day I get.

Alot of the time they won't do any surgery until the cancer is under control. So, they'll probably put you on chemo to get the cancer stable first. Are you going back to Darwin or staying in Qld?

Cheers
Budgie

Re: Diagnosed with Kidney cancer

Catty — Thu, 11 Feb 2021 07:29:12 GMT

That is really inspirational Budgie! That is mind and I guess everyone’s biggest fear, that kind of diagnosis. Thank you for sharing.
I will do whatever I have to to keep going and even tho I know there are days when you just have a snap or break or are just frustrated (I’ve had two this week in hospital) that I will push on through as best I can.

I’m still on the roller coast as i was told the soft mass were blood clots but they still aren’t sure. If they stick a needle in and drain then it could have disastrous consequences so I am extremely greatful that they want to take the time to make sure of what they are dealing with.
My preference is to stay in QLD as I don’t have anyone to really look after me in Darwin with recovery plus I didn’t really want a 4hr plane trip with clots.
I just seem to have a very unusual situation of which specialists should really be handling my case.

Re: Diagnosed with Kidney cancer

Colin81 — Fri, 12 Feb 2021 09:09:33 GMT

Hi Catty,

Just read through all the posts and all of the advice sounds good (such a great discussion group for us cancer sufferers, sorry it was not around years ago), well I am a bit like Budgie, I have had cancer(s) over the past 18 years and had two terminal diagnosis (from different cancers), had truckloads of medications, chemo's and tests mixed into that a couple of surgeries (cancer related) and just like Budgie 'I am still here' 3yrs and 10 mths since my last encounter.

I actually take no medications relating to any of the cancers, a couple of heart tablets and Endep (for neuralgia).

Do I have problems, yep sure do, I am still plagued with dizziness, fatigue and a bunch of what I think is minor stuff all thing being considered, it all messed with my head for a long time and I still use phycologists as the need arises.

You have had some really good advice (from this site) and its not all doom and gloom, sure it can be tough and very difficult to cope with day after day but rely on your doctors (some of the best in the world), you have wonderful support from your mum and that is fantastic. As I usually say 'go forward, meet it head on, all the treatment, test etc.' you can't change what is happening anyway.

I hope all goes well in this new round, yeah I know it sounds like a boxing match but if you get knocked down make every effort get back up again.

Kindest regards

Colin