Hi @Crewzin22    It's fantastic that you and your wife have spoken more about your situation now. It's surprising how the people who know us the best maybe don't realise whats going on inside and they can't help you until you communicate. I had this after my surgery. My wife assumed I'd be selling the house, travelling the world, go skydiving (joking!) etc. She was all set for doing that, Actually no, I just want to get back to taking life each day as it comes. I'm genuinely grateful for each day because if I hadn't been so lucky to be diagnosed early, who knows how few I would have had. I feel that making huge plans for far off in the future is temping fate and puts pressure on me (to be alive!) She couldn't understand that I was just happy to pick up my normal life and quietly move on. That caused tension between us. And you can only address that by communicating. I'm getting better at making plans, but I'm still a tiny bit relieved to wake up every morning.   Maybe ease off on alcohol. It'll make you feel worse short term, lower your mood and you make less good decisions in that situation. I'm not saying you need to give up if you don't want to. My Surgeon's advice on alcohol pre and post op was that he had no specific advice. Don't overindulge, follow standard guidelines, it isn't any worse from a medical perspective that you are drinking more booze now you have cancer than if you didn't have cancer.   Going back to what I said before about your mental state...if you can't change the wait time, can you change how you feel about the wait time. Here's a question...you are going to have major surgery hopefully in the next month or so. That will be a good thing. But it's going to hit you hard physically and mentally. You know it's happening. Is there anything you can do now that help you at that point? Think about that for a minute....   Some people get a diagnosis and are rushed to surgery. They can't prepare. You have an opportunity right now. Might not feel like one a lot of the time, but you do. Can you get yourself any healthier? Quit smoking, lose a little weight, gain a little muscle, eat a bit healthier, drink a bit less alcohol, sleep a bit more regularly, etc? Spend some happy times with your family? All of those and more will help you now...and help you after your surgery. The surgery is significant and it takes a bit of time to recover...I had a small complication, nothing life threatening, but it did set me back a bit physically. You can do things now to help your future self. You don't need to go on a crash diet or an intensive training camp...what small changes can you make? you'll feel better for it mentally and physically.   If you take steps now to help your post op self you might be less hard on yourself. The other thing I had to learn to do was not ask how this happened. I'll never know for sure and at the end of the day, I can't do anything about the past. I can do things to help myself going forward. Keep up the persistence with appointments. Ask for help...nobody is prepared for cancer, but there are others who have walked this path and come out the far side...and lots of people and resources that were there to help them on the journey.   Don't get me wrong, me and the wife got drunk the day I was diagnosed (out of the blue.) Very drunk. There are also several studies that say a moderate intake of alcohol reduces your risk of contracting kidney cancer (this is true!) so please don't think I am chastising anyone for drinking. Get it out of your system and start thinking that the start of your recovery from future surgery is now. You'll feel less helpless right now and you will benefit yourself. Try and make the wait time as beneficial as it can possibly be.   ... View more

I know it doesn't feel like it, but I actually think you've made a bit of progress!   The Specialist admin staff have said to call them if there is an issue in 2 weeks. That's good. It's not great, it's not an appointment for this afternoon, but it's more specific than telling you nobody can do anything.   What is your current situation? What stage are you, what size tumour, do you have any symptoms, etc? I know you won't want to hear this, but it may be that 3 months wait won't make any significant clinical difference. I'd want it out ASAP to be honest, but mine was borderline...my tumour was just over 3cm when discovered. The surgeon said there was guidance to suggest vigilance in an RCC under 3cm. but given my age (47 at the time) and scan 2 years earlier for an unrelated back issue that showed no signs of abnormality in the kidney, he decided I'd need it out at some point so best to do it while I was young and generally healthy, so I got booked in straight away and was really lucky as he had just been given some operating time when they were opening up surgeries after the first covid wave (Surgery was June 2020.)   I'd keep phoning every few days...hospital and specialist. very polite, just checking in to see if there has been any update etc...give them updates too...have any symptoms changed, etc Might not make it any quicker...but it will help stop it from being any slower.   You could change specialist but you run the risk of going to the back of the queue. Hospitals are swamped right now, so that does sound like the reason for your delay. My wife works in a private hospital and they have wards closed because they don't have enough staff to use them safely. That means surgeries are being delayed as there are no beds for people to be in after surgery. At various points in the last few months they've had 25%+ nursing staff off sick with Covid. They have no agency staff as they are in the same boat and there is nobody to fill the roles. None of that helps you though...so do what you can (without getting yourself too worked up!)   EDIT TO ADD: Next time you talk to your GP...ask if there are any resources they can recommend to help your state of mind. Mine recommended mindfulness courses and got me a login to some online materials. I found it really useful. If you can't change the wait, can you change how you feel during the wait? It'll help you during recovery too when you are feeling sore and sorry for yourself. ... View more

Hi @Crewzin22    I get your situation. You have your diagnosis...so what next? Let's go, hurry up, etc. Through sheer luck and stars aligning I was diagnosed and had my partial nephrectomy surgery booked and carried out in the space of a few weeks. I've had a few scares during vigilance post surgery (just over 2 years ago), and waiting for referrals, appointments etc is torture.   My advice to you is to call them every day. Honestly i would. I have an elderly friend in her 70s who has had several types of cancer and she is still alive because she is an absolute pest to the public system. Various specialists at two hospitals are well aware of her and she gets the royal treatment, because frankly, life is easier for them if she doesn't phone them every day.   You have nobody else fighting your corner sometimes, so you do have to push. It might be that there is nothing that can be done to speed things up, but if you are in the front of people's minds, you have a better chance at getting things done. I recently did this for a referral to an ENT specialist (I have some lumps that might be RCC spread or not...) I had an appointment in a month and called every day for a week. Suddenly a cancellation happened and I got the call to go in the next day. Was it because of the clinical need in my case? Or was it because if I get my appointment I'll stop annoying them? I suspect a bit of both.   It's not my nature to be pushy, in fact it's quite difficult for me...but it's my life I'm talking about here, so I got pushy and got results.   I'm not saying be horrible. Frequency and making people know your name might be enough to get things moved along. There might've been an issue. There might not. You can be persistent and pleasant at the same time.   Does the specialist have any cancellations? Would the specialist take you as a public patient in another hospital in case the hold up is with the hospital? These are all perfectly valid questions that you won't know if you don't ask. And who do you ask? Everyone! Anyone who can remember you. Medical Secretary, PA, any reception staff. Get on first name terms. Your Specialist themselves. They might not be the hold up, like I said, it could be the hospital...and if that's the case some public sector ops are being carried out in private hospitals.   Worst case scenario...Get your GP to recommend other specialists and call them about lead times.   The quicker you get this dealt with the better you will feel physically and mentally. You can focus on your recovery rather than waiting for an operation.   Good luck! ... View more

Good luck with the scan. I always get nervous, it's perfectly natural. I try and tell myself, there's nothing i can do to change the results and the scan itself isn't painful. If a scan finds anything, then it's better than not knowing whats going on, because you can only deal with the things you know about.   An incidental finding of a possible small RCC is a real stroke of good luck. It might not seem it at the time you find out, but it gives you a much better outlook than if you had found it a few years further down the line when it had started to cause you problems.   I found that regular exercise helped me too. I played football but didn't do much else. When i was diagnosed I decided to go walking every day. I would walk 45 mins every morning and afternoon. I think it made me a bit fitter (and helped prepare me for surgery) but it also gave me some free time away from the internet and in the fresh air to clear my head. Sometimes I would listen to podcasts on a variety of topics I was interested in, other times I would just enjoy the peace and quiet. Doing it regularly also helped me build a routine so I started to look forward to that time to myself as well. I found it useful for my physical and mental wellbeing.   After my surgery I was able to build back up my fitness quickly. I got back to playing full contact football. The surgery hasn't stopped me, so even if it is RCC, you've caught it early, you'll need surgery but if you are otherwise fit and healthy, you can have a pretty good expectation of getting back to where you were before the surgery.  That's the thing I find hardest to get my head round sometimes. I had a condition that would've killed me if I left it alone, but I was never actually sick...I had to have this surgery that knocked me back a bit, and had to recover from that, but Kidney Cancer hasn't slowed me down. ... View more

Hi Sass85,   Waiting can be a nightmare. Try not to worry about it. Easier said than done.   That said...is there anything you can do to reduce the waiting time? Also, what is your situation?   How did you discover you might have Kidney Cancer? Did you have symptoms or was i an incidental finding?   For example, I had a CT scan for possible appendicitis. It turns out I had a stone in my appendix which was causing a bit of a grumble and on the other side of my body, sitting nice and quietly minding its own business, was a 3cm tumour on my left kidney. I had no symptoms. I was really lucky as this meant I had caught it pretty early.   My surgeon told me anything under 3cm is often observed to see if or how fast it grows, so if it is small, the waiting is probably not going to make things worse even if it is cancer.   Peace of mind is a great thing, so if you feel you are going nowhere, people often don't like to do this, but be a squeeky wheel. I was getting a non-urgent heart stress test done but my appoint was 2 months away. I called them weekly to see if they could do it sooner. A cancellation came up and they called me, I only waited 3 weeks.   For my cancer treatment I felt mine was very quick. I went private. I went to a Private Emergency Department as my wife works there. They organised my scans in the hospital, so I had a CT scan within 2 hours of entering the building. I had my results an hour later. Because I was still in the ED (I felt fine but was simply there to get seen to quickly) I got told my results by a doctor...the scan was basically a diagnosis of Renal Cell Carcinoma.  At this point I have a diagnosis and I only went in because I had a 1/10 pain in my right groin that had lasted for 3 days (it disappeared never to come back that night, haven't felt it since.) I went in with a groin grumble and 3 hours later effectively have a diagnosis of cancer.   The next bit was pure luck for me. The ED Doctor gave me a referral to a Urologist. There was a Urologist consulting in the hospital that morning. He saw me within an hour. The scan was 100% proof I had cancer in his option. He organised another CT of my chest to check for spread and my operation was booked for his first free time...about three weeks from that time. I got my chest CR results (all clear) and went home about another hour later. I got there at 6am witha  groin strain or grumbling appendix and left less than 5 hours later with two CT scan results, a cancer diagnosis and life saving surgery booked three weeks later. It happened so quick I didn't have time to worry about it   Those three weeks were slow. They dragged in. I think it would've been worse if I had to wait 3 weeks for a diagnosis, but I had that already. I knew what I was dealing with and it was 3 weeks to prepare for surgery and rehab. I asked my surgeon if he could do the operation at a different hospital sooner. The answer was no, he only had so many slots available, etc. He also assured me that 3 weeks would make no difference clinically for kidney cancer at my size and stage.   My advice for you? If you don't have a diagnosis yet...push to get one. call doctors, annoy people for results. My urologist didn't tell me my pathology results for days. I had to chase up his rooms from my hospital bed...I bumped into him while I was slowly walking around the hospital ward and had to remind him...he had received them days earlier but forgot to tell me I had clear margins!   If you are able to go private...can you do that for a diagnosis? Can you get a private referral to a Urologist and be seen sooner than in the public system? That doesn't mean you have to have a private Operation. At least you will know what you are dealing with and what your priority is, which you can then take back to the public system...show your GP and see if it moves you up (or down!) the priority!   I was really lucky. Stars aligned for me. If you feel like things aren't moving as quickly as you'd like...speak up. Nobody else will!   Good luck with your journey...and even if it is Kidney Cancer, you can deal with it. I'm 1.5 years post op and fortunately haven't seen any recurrence. is till get regular scans and worry about every ache or pain, but so far so good! ... View more

Hi @Sass85    Fingers crossed you don’t have cancer...but if you do, then you have caught it very early, which with kidney cancer is hugely important. If you do have RCC then the treatment is likely to be surgery to remove it. If it hasn’t spread, then there’s every chance you won’t need any further treatment beyond this, just get regular scans for several years to keep an eye on any recurrence.   Try not to panic. Easier said than done, I know. If you do have cancer, focus on getting a treatment plan and go for it. A urologist told me I had won the lottery when my RCC was discovered as an incidental finding, so if yours is cancer, try and stay positive in the knowledge that you found it so early and have treatment options that you might not have had if you found it in a couple of years time. ... View more

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!) ... View more

Hi Effie, I’m glad you came back here to touch base.   This is a really difficult time of year for people going through what you have experienced. I lost my Mum when I was 21. It does get better, it gets easier over time...but you might not feel that way right now. Cancer can be a terrible illness, and sometimes we don’t win the fight, no matter how everyone tries, family and friends, plus medical professionals. You really have nothing to blame yourself for...you did your best. I’m sure your Dad appreciated everything you did, whether you talked about it or not. Unfortunately in the end it wasn’t to be, not because you did the wrong thing, but because there was nothing to be done. My advice to you would be to get through the festive period, and then reach out for help with your grief. This could be online or through your doctor. It’s OK to visit your Dad as often as you want, it’s only a short time since he passed. Everyone deals with grief differently, so don’t worry about feeling guilty or sad, it’s Ok. It will get better, but there are definitely people out there who can help you. Feel free to share here, others have gone through what you have...and at the very worst, I always feel better when I have shared my worries with a friend, family member, or even some strangers in the internet. ... View more

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. ... View more

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!      ... View more