Renal Cancer - Northern Brisbane

[Jan_lw]

Hello, My name is Jan, I live with my partner an hour north of Brisbane. We have been together for four years and our wedding is planned and booked for October 8th. Last week (June 15th) my partner (Kevin) was diagnosed with stage four renal cancer that has spread to both lungs. We had no idea that he was ill although he had lost a lot of weight in a short period of time and was feeling very tired. After visiting the doctor and having some scans and xrays we were sent to Brisbane hospital where further tests were taken and the diagnosis made. The doctor has prescribed Sutent and we are on day four of them. The back pain had been quite severe and the pain killers were not doing the job. The doctor has now given Kevin patches which appear to be working. The nausea has also settled down and we have partly put that down to drinking ginger beer regularly. We are on a mission to get the weight back on and build Kevin's strength back up. We have bought some protein powder for weight gain and making the most delicious milk shakes. No low fat food here any more. If anyone has any recipes for weight gain I would be really greatful. I am going through all of the superannuations to see which ones have a disability payout and would appreciate any comments on that.. I'm not 100% sure how it all works but i cant see any companies handing money out without a fight. We have never dealt with Cancer before and this is a total shock as it would have been for all of you. If anyone has any information that you think would be useful I would love to hear from you. I will scroll through the forums and see what i can find there. Take care everyone and thank you.. regards Jan

[kj]

To get access to super you will have to contact the relevant superanuation boards and find out if you fit there criteria you then need a medical letter from the Treating doctor stating you are unfit for work,a medical is then arranged by superannuation company and claim is processed wish you well in the future with this illness kj

[Jan_lw]

Thank you KJ for taking the time to respond to my message. Hopefully we won't have too many issues with the super companies. Enjoy your evening and thanks again.

[talljohn]

Hi Jan. Your partners diagnosis sounds very familiar to mine. At the beginning of February I had pain in my back so took myself to hospital emergency hoping it was kidney stones, scans reveal an 8cm tumor in my right kidney and two metastasised tumors in right lung. After a long 17 days of tests, scans etc, right kidney and bottom lobe of my right lung were removed. Last week, I finished my second round of Sutent now having 2 weeks off before heading back to the Oncologist. I have recovered from the surgery very well, returning to work in April. I also have not had any bad side effects from the Sutent apart from tingling, dry hands and feet and a similar sensation in my mouth - a bit like I burnt inside my mouth with hot soup a couple of days ago. But my taste buds seem to be very mixed up - nothing tastes nice any more - so I just keep eating as much food as I can. Overall, after 5 months, I consider myself fortunate. The only real problem I have is tiredness - not sure if that is from the cancer, the operation or Sutent. Despite the tiredness I also have difficulty sleeping - usually up after just 4 hours of sleep. The whole "event" is a tremendous shock initially and I'm not sure if I have really come to terms with it all just yet. But I have heard a comment - "Do what you can". Sounds good to me. And in these circumstances, "Do what you want" doesn't sound too selfish.

[Jan_lw]

Hello John, Thank you for your reply. Your circumstances are so very similar, Kevin's tumor is 9cm and both lungs are effected badly. The doctors mentioned that there was no point taking the kidney out because it had spread to the lungs and also some nodes. I was so sad reading your story John but part of me felt comforted (that we are not alone I guess). I hope that does sound too selfish. I am pleased to hear that you are coping with the Sutent AND that you are going back to work. That is wonderful. Kevin is so very tired too. He was tired before the diagnosis but really battling since being on all the medication. We have just been to the doctor and had is patches (pain killers) doubled and a script if they don't work for something stronger. He is struggling a lot with the pain in his back. How did you overcome the pain John. We have a heat bag that Kevin is using and other than some massage its just the drugs. We go back to the see the Oncologist mid july and Im hoping to get some details of people who can support us and give information. Right now I feel a little lost because there has been no real information given to me...so Im searching but will pick some brains when we see the doctor in a couple of weeks. John, thank you again for writing and I do hope everything turns out for you. Please stay in touch and let me know how you are keeping and please if you have great remedies, I'd love to hear them. Take care Jan

[Jan_lw]

Of all the mistakes I could have made.. Second paragraph, second line..Doesn't...NOT Does. 🙂

[talljohn]

Hi again Jan. I am one of the luckiest cancer sufferers I know of. Your partners cancer sounds considerably worse than mine despite our tumors being of similar size. The pain in my back that I had when I first went to hospital was quickly relieved with panadol (liquid drip) and a saline drip to flush out the kidney because it had apparently become blocked by the tumor (hence the pain). The same pain re occurred the day before my operation - again relieved by a repeat of the initial treatment. Of course, I now have no pain because the kidney is gone. The surgeons debated at length whether to remove the kidney or just the tumor. The same debate with my lung - part of the lung or just the tumors or treat the tumors with radiation and/or chemo - eventually they decided to remove part of the lung. So here I am now, feeling terrific - even after having key hole surgery to repair a hernia 10 days ago! When I read other peoples comments on this sight I feel somewhat guilty. I am surprised surgery isn't an option for your partner. Fortunately, my cancer has all been "cut out" - the Sutent being used to inhibit any further cancer development. So I consider myself one of the lucky ones. But I do remember the anger when I was first diagnosed - no, not now, I have so much I still want to do .... In my case, information = sanity. Google. Google everything - starting with any words you find in doctors reports. Google Sutent. Remember only 3% of all cancers are kidney cancers so information on Australian sites can be limited. Google "Kidney Cancer Association" - its American but their information is relevant. In my case, I know it will come back - it may be twenty days or it may be twenty years, but it will return. I'll cross that bridge when I get to it. In the meantime, while you're getting married in October, my plans are to be touring Egypt and Italy. For one reason or another I have always put off doing things .... not any more. Smile as much as is possible. John.

[Jan_lw]

Hey John, Italy and Egypt sound fabulous. You really must do it and don't put it off. I do the same and unfortunately have put off some things that would have been important to our situation now. I have googled a lot of information on kidney cancer but right now I am looking for natural pain relief and something for nausea. Ginger beer seems to help a lot with the nausea. Kevin lost approx 12 kgs in two weeks so I am trying to build his strength up but he doesnt have much of an appetite. We have a lot of information on Sutent and it appears to much friendlier that chemo which we are thankful for. Did you get a second opinion when you were diagnosed John? I read about a second opinion but I feel unless I am an expert how would I know which way to go. The doctor we have seen, be it ever so brief, spoke to us with confidence and compassion. We felt comfortable and at ease with her. I must say that the first few days in hospital I was searching for a middle age man wearing an expensive suit, glasses and greying at the side with professor on a name tag and a plum in his mouth. Not to be, it was more like an episode of Scrubs with lot of good looking YOUNG doctors. Certainly didnt make me feel good but I convinced myself they would be up to date on all the modern day medicine. Were they able to tell you why you got kidney cancer John. It appears that its due to chemicals or something similar. I don't understand why you say it will come back ? We go back to the specialist mid July and I would be more than happy to say they were going to do surgery but at this stage it doesnt appear like that is a priority. Thank you for writing John, its good to hear that you are doing so well...Now get those bags packed :) Jan

[talljohn]

Up and about early as usual. Hi Jan. When I was prescribed Sutent, my oncologist (who I usually refer to as my "cancer doctor") also prescribed Gastro Stop Loperamide 2mg to stop diarrhoea and Maxolon 10mg Metoclopramide for nausea. I suffered neither of these side effects of Sutent so didn't use any of the tablets. As for why I got the cancer .... who knows .... I'm male, over 50yrs, I smoked, I grew up on a farm, renovated a house and do minor mechanical work so have been exposed to all forms of chemicals including petro chemicals and probably asbestos so I fit the criteria for increased risk - but I don't think there is any actual medical proof that any of these things actually cause it. Some cancer exists in my family including my father having a kidney tumor removed (he was over 80yrs at the time). Genetics? Maybe. It is all very experimental - both the reasons why and the treatments. Sutent has only been used for a couple of years apparently, in a few more years there will be another drug. Because I believe everything about cancer is experimental at the moment, I am not going to be foolish enough to say I am cured - I know they have "cut out" what is visible - but I believe it will come back - I won't be surprised or angry - it's my way of coping - I'm extremely fortunate that it hasn't physically affected me greatly - so I know I have time - hopefully another 20+++ years to "Do what you can" and more importantly to "Do what you want". As for the Doctors, my "team" were also quite young. The Urologist (who I refer to as "the Kidney man") about 40yrs with the hands of a 12 yr old girl! My "lung man" was invisible - I think I saw him for a minute about 10 days before the operation! I didn't feel I needed a second opinion because the kidney man was very straight - we are going to remove the tumor but probably the kidney as well since your other kidney is fine. Because I had been a smoker much debate about the lungs - but I think kidney man eventually told the lung man to remove the lobe with the secondary tumor as I was a very fit person. I still find it odd that it was more than 2 months before I actually saw a "cancer man" for treatment. And then in hospital there is the confusion - specialist surgeons, surgeons, registrars, hospital doctors, respiratory specialists, anesthetists .... I must have had more than a dozen doctors .... who is who .... it is a very complex society in hospitals! Do you know what having cancer has done to me? That answer is in what I have written above. Count (if you want) how many times I have written "I". Have a great weekend John.

[Jan_lw]

Hi John, Just a quick message to thank you for all of your kind words of encouragement. Kevin and were married on Aug 6th and he passed away peacefully in my arms at home on Aug 28th after a couple of days away. The pain is horrific but I know I can work through it and come out the other end. I hope you are keeping well John and wish you loads of great health and happiness. Take care and thank you again x