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Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Mon, 01 Aug 2022 02:53:44 GMT

Hi everyone, im John and I was diagnosed with renal cell carcinoma of the right Kidney. I am going through the public system here in Sydney and the specialist has given me 3 months to get a partial or full nephrectomy. Well today is the 1st of August and marks the 3rd month and still NO call from the hospital 😞 as to when I might be going in, I have contacted the hospital like a month ago and they did say ill get a call in August, like anyone going through this I'm just scared and worried that I'll be forgotten 😔 and go through the cracks so to speak. My sleeping patterns has changed tremendously where I don't sleep much or just wake up early in the AM and just think about everything that's going on. Think of my wife my 8 year old daughter, work life in general. The reality is I just want this surgery done already and the more I wait the more im starting to feel forgotten, yes I know they gave me 3 months I was so hoping and praying that I would have been operated on with in the first month or two not have to wait the whole 3 months. Please forgive me if I'm coming off as selfish or what ever, just needing to vent and get this off my chest..

Thankyou everyone 💛

Re: Was diagnosed 5 months ago Kidney Cancer

LindaG — Mon, 01 Aug 2022 06:32:27 GMT

Hi John, sorry you’re having to wait so long. That would just be making your stress even worse. Have you got a GP who can find out for you what’s going on? You can call the Cancer Council too for a chat about your fears. They are really helpful. I will pray for you to hear from the hospital soon 🙏💕 Linda G

Re: Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Mon, 01 Aug 2022 07:34:08 GMT

Thankyou Linda, I spoke to my GP and asked him if they're is anything he can do, he said that there isn't much he can do unfortunately, he just asked me cause it's the 3rd month to call the admissions section and ask the question, he also said to call my specialist I was seeing, I was going to go private but that went South unfortunately so had to go public, my GP just said to call his office up and to inform them that it's the 3rd month and that I haven't heard any news on an admissions date? My GP did say the specialist still has a duty of care towards me as I was paying $150 a pop seeing him and that he should be made aware that I have not been given any dates as of yet.

But you are right Linda, my head is every where and I'm not thinking straight at home or at work and I don't think mentally I'm coping as good as I thought, it has me in a spin that is getting faster n faster

Re: Was diagnosed 5 months ago Kidney Cancer

AlfHam — Tue, 02 Aug 2022 03:49:40 GMT

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!

Re: Was diagnosed 5 months ago Kidney Cancer

LindaG — Tue, 02 Aug 2022 03:55:02 GMT

Hi John, I totally agree with everything that AlfHam says. Polite but persistent!! 🙏💕

Re: Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Tue, 02 Aug 2022 22:35:03 GMT

Totally agree 100% I called up the hospital yesterday and the lady in admissions was nice so I asked the questions and again she said due to stupid covid it's back logged alot of surgeries, she also said that it might be possible that I might have to wait another 3 months ontop of what I've waited already, I said to her im sure this isn't good for my cancer to be waiting for to long? She then said for me to contact my specialist. Anyways I called up my specialist office and explained to the receptionist the situation, first thing she said was its weird that the admissions office at the hospital asked you to call here? Since you have gone public! That comment was bloody weird to me because this specialist was seeing me and now just because I am not going private they try to wipe their hands of me? That's the thought I had, anyways she opened up my file and said that due I still have 2 weeks left to actually complete my 3 months thsts due to when they sent me the papers to go public and had to take those papers signed and all to Liverpool hospital. She said John please call back here in two weeks from today, she said call the hospital first if they by chance say you have to wait another 2/3 months then call us back immediately and we can talk to the Dr to see if he can expedite your admission.

Im quite confused as to the roll of these specialists, these guy's have an office near the hospital they mainly deal with private hospitals as they made comments that going pvt is better with nill waiting times felt like they were pushing this narrative but I haven't $25000 to get this done in a pvt hospital but I just can't believe that they kinda wipe their hands of you once you say you can't go pvt but have to go public. The receptionist gave me this feeling and I'm assuming the specialist is the same, the only other Dr im seeing is my GP, im lost as to what else to do? I'm seeing my GP this morning to talk to him about all of this because I feel it's complet BS tbh.

Re: Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Tue, 02 Aug 2022 23:04:09 GMT

Same 😊 om here at my GP to discuss this because to tbh I have no idea how all this works?? Should I get another referral for souther specialist? So many questions.

Re: Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Wed, 03 Aug 2022 00:18:27 GMT

Well that went no where, only advice my gp could give me regarding the above mentioned was to email my Member of Parliament? Wth

Re: Was diagnosed 5 months ago Kidney Cancer

AlfHam — Wed, 03 Aug 2022 01:50:39 GMT

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.

Re: Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Wed, 03 Aug 2022 04:20:24 GMT

My tumour as of 3 months ago was 4.6cm im assuming stage 1? The specialist did say it was a slow growing one so I'm hoping it's extra slow hehehehe
You definitely are right, progress has been made and at least they asked me to call them back in two weeks I felt kinda relieved yesterday when they said this to me, felt like I got somewhere you know 🙂
As for symptoms, it's kin of hard to pin point the symptoms? Not sure if it's just me or if it's the symptoms of this cancer? My mental state is bad, I thought I had a grip on things but I don't, I actually spoke to my wife today for the 1st time about my feelings and what I'm thinking and going through, my wife has been waiting for me to open up she said but I never did instead as bad as this sounds I started to drink more alcohol (beer) my wife said to me that she saw the change in me and the drinking and she would always tell me to stop drinking because of the cancer but John thought he knew better and continued, i was drinking because I wanted to forget everything I wanted peace within my head from the constant thinking ,what ifs scenarios. I'm sorry if I'm saying to much but feels good to just get it out there, its getting harder to go to work now but I think that's due to my mental state atm where I just want to be with my wife and daughter

Re: Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Wed, 03 Aug 2022 04:27:41 GMT

Its definitely the massive build up of patients and the hospital staff numbers being low, we hear this on the news all the time, its just unfortunate that my timing coincides with all this.

Re: Was diagnosed 5 months ago Kidney Cancer

LindaG — Wed, 03 Aug 2022 07:01:32 GMT

Hi John, AlfHam gives great advice!! Yes you can get through the next two weeks. It’s so good you have shared with your wife your true feelings. You don’t ever have to pretend that you’re ok with your wife. She’ll be the one standing by you through this. A cancer diagnosis does all sorts of things to our minds because of the fear. I got horrible anxiety and panic attacks that I had no control over. It only stopped when treatment started. Talk to the cancer council people if you need to. They are great and might be able to tell you more about what to expect. 🙏💕 Linda

Re: Was diagnosed 5 months ago Kidney Cancer

Crewzin22 — Thu, 04 Aug 2022 01:17:46 GMT

Big time plays with your mind Linda, it's incredible tbh, I haven't been to work since Tuesday, I work afternoon shift and on Monday when I went in to work I wasn't myself and I just felt depressed and didn't want to be there, called in sick on Tuesday and Wednesday to try to gather my thoughts, spoke to my wife about what I needed to tell her and then we went out for dinner the 3 of us. The depressed state I get in is ugly and all I think about is wanting to be home with my girls, they are like my safe zone that's how I feel and as much as I need to go to work and pay bills I really have to push myself to go to work not like before I'd have no drama to go to work. Ever since this diagnosis it's changed me changed my way of thinking and how emotional I am now and to top it off I get in to a depressive state and anxiety and what ever else.
Thankyou Linda 🙏

Re: Was diagnosed 5 months ago Kidney Cancer

AlfHam — Fri, 05 Aug 2022 08:02:01 GMT

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.

Re: Was diagnosed 5 months ago Kidney Cancer

Liz73 — Thu, 28 Dec 2023 05:45:53 GMT

Hi John. I'm Liz and my biopsy was positive to right kidney cancer on October 27th 2023. I had a laparoscopy for full kidney removal last Tuesday, 19th Dec. I was operated on as a public patient at Canberra Hospital. My operation was rescheduled from 21/11/23 and 28/11/23. The only bill I had to pay was for the biopsy, minus the Medicare rebate. I receive a part aged pension. Can Assist will pay all bills for me from diagnosis onward. They also give fuel vouchers. The xray was before I found out about Can Assist. Prescriptions are automatically billed to them by the pharmacy. As I live more than 100kms from Canberra Hospital, I am eligible for Government accommodation and travel assistance.

I don't understand why your op is taking so long. Mine was a full nepherectomy.

Hoping things get better for you. The specialist did say that kidney cancers are slow growing.