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Another nervous patient losing patience.....

Glenn8962
Posts: 8
Joined: Oct 2011

Hi All,
Very interesting reading on other posts, thankyou all for your input as it does help so much to read other stories.
I also have just been diagnosed with 5+cm tumor in my right Kidney, found accidently. I am a male, just turned 49, reasonable fitness and as mentioned in many posts, expecting the arrival of my first grandchild in Feb.
My question is that after numerous tests and specialist appointments (over 1 month) I now face the possibility of going onto a waiting list which can be up to 2 months until surgery. This is making me extremely nervous and anxious of the thought of the wait. Is this a normal procedure? I have another appointment in 5 days and have been advised to go privately and get the surgery preformed ASAP (+/-$5000)
Any tips I can tell the Urogist Spec. to hopefully fasttrack the operation?
And what questions should I ask the doctors about the Surgery.
You all have probably been asked the same questions 1000 times over, but realy appreciate your input.

Thanks and good health all,

Glenn

Martha_R
Posts: 6
Joined: Dec 2010

Hi Glenn,

I also had 5 cm tumor in my right kidney found accidentally. I had to wait almost 6 weeks for my surgery and it was a very long wait for me. BUT It is a good sign when they tell you to wait for your surgery, because they are pretty sure that you can wait. Otherwise you will be having the surgery in few days. Are you in USA? My surgery was covered by insurance, but the cost was above $30,000, so I don't know where it costs $5000. In general, try to find a doctor/hospital where they specialize in kidney cancer even if you have to wait. My surgery was performed by two doctors - oncologic urologist and surgeon. It was laparoscopic complete nephrectomy (the tumor was positioned in the middle of my kidney) and went very well. Now, year and a half later I live completely normal life. When i was diagnosed they told me that I have 90% chance that it is cancer. However I was a very lucky one, because my biopsy results indicate that after all it wasn't cancer, but I had oncocytoma, which is a rare benign tumor.

Glenn8962
Posts: 8
Joined: Oct 2011

Good news on your results. I actually live in Australia and our hospital is covered, just have to pay the Urologist Specialist if I go privately. Currently through the public system I am seen by a Oncologist and Urologist. Thanks for your input and good health, Cheers, Glenn

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Glenn,
Most kidney cancers are found accidentally. The sooner the surgery is done the better sounds logical to us but sometimes we don't have much choice. My wait time was 6 weeks because the urologist was booked up and was away for a week at a seminar. I thought it was a long time to wait, but I was assured that my mass was very small (little over 2 cm) and kidney cancers generally grow very slowly. I was also concerned because I had to have my gall bladder removed at the same time and I was in pain during the wait and was afraid 6 weeks would be too long to wait for that. My diet was so strict that I lost 12 pounds. Others here have had similar waits, but I understand your concern. If it bothers you then seek out another urologist. Use that time to get a second opinion about the specific operation -- laproscopic vs. open, partial vs. radical, etc. I did. I waited on my urologist's schedule because he had performed a laproscopic blasting of a large kidney stone my wife had and did a fine job. The important thing is that you have confidence in the surgeon. How many of these has he or she done? Don't be afraid to ask. Ask what's the worst thing that ever happened to one of his patients during or as a result of the surgery. My surgery went fine and I recuperated nicely over a 6-8 week period. I am pretty much back to normal now, except for my diet, which is low on salt. But that worked out good. I've just been taken off my blood pressure medication for the first time in 15 years because it is now too low. Today my doctor told me if my blood pressure goes up somewhat, he may just have me try eating more salt. I almost cheered. Yea! Pizza.
Good luck with things.

Mike

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Glenn,

Congrats on the new Grandbaby, I have nine and plan on being Great Gramps some day, you should too. Its important to stay positive as you go through this. There are some amazing people on this board, its a good place to come with questions or if you just need an understanding ear. Welcome to the club.

I echo Mike's advice adding only that sometimes Docs fail to address our sense of urgency vs. theirs. Don't be afraid to ask for a better explanation about the wait time. It will probably be related to the tumor size, location, and RCC being slow growing but get it from the horse's mouth and if you're not satisfied seek another opinion or doc.

The mental side of waiting can be very hard as well. Try to find something, work, a hobby, a new diet and exercise program, etc. to occupy your mind and help keep the inner demons at bay. Its also not to soon to start thinking about and planning for your recovery which can pay dividends now and post op.

Good luck and keep us posted,

Gary

Glenn8962
Posts: 8
Joined: Oct 2011

Thanks for your comments and agree that this forum helps so much for that sympathethic ear. I can understand when you are diagnosed we want it acted on ASAP, but in reality I would hope the specialists that work with these situations, understand the real urgency.
Your comments about diet and excersise is something that I have undertaken, shame it takes "a kick in the guts" to realise how important your health is. Thanks again and enjoy your Grankids,
Cheers, Glenn

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

I meant if my blood pressure goes down it's pizza time. Not up of course.

Glenn8962
Posts: 8
Joined: Oct 2011

As we all agree waiting under the circumstances isnt nice, but for the peace of mind a second opinion would be wise. Glad to hear your health has returned to a better level than before your diagnosis. My blood pressure also is a litle high and have already lost a few kilos (Lbs)but avoiding my beloved red wine and also pizzas have made a difference. I am sure in time i will appreciate the times I can have those odd splurges. Thanks for the advise and input and good health.
Cheers, Glenn

BG
Posts: 85
Joined: Jun 2011

Hi Glenn,

I had a 1 month wait before my sugery, and I checked another urologist as I thought 1 month was too long (I wanted this out of me), but he had a 2 month wait.

Most important, is you have someone who is experienced. You are young (I'm 49 as well), so you can ask your doctor to put you on a cancellation list. Then if one of the booked surgeries are not able to be performed, they can call you and get you in.

Tell the urologist you would like to get in as soon as possible and that 2 months is to long to wait.

I would ask if they feel you require a radical neprectomy, partial, open surgery or laproscopic, and if they can use the davinci robot. Position and size of the tumor has a play in the way the surgery is carried out, also if the urologist has experience in the newer surgery methods (some do not have experience with the robot). My surgery was laproscopic with robot, and I have 5 very small incisions (1/4 inch) and one larger 1.5 inch incision. The open surgery recovery is longer than laproscopic.

Let us know if you need more details! I wish you well, and will pray for you.

BG

icemantoo's picture
icemantoo
Posts: 1651
Joined: Jan 2010

Glenn, I waited over 2 months from diagnosis to surgery. Not fun. My wife tried to relieve the strss by taking me to a Bed and Breakfast on the Canadian side of Lake Huron. Everything was fine until we went to a British restaurant for dinner and they brought out all of the meals on a cart so that you could see them. The last thing in the world I wanted was the Kidney Pie off the cart. Just like me you can laugh at things like that 9 years later.

Best wishes,

Icemantoo

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

Glenn,

My diagnoses was on July 12 last year with my surgery scheduled for September 29. The wait seemed forever - and then on September 13 I had a second opinion and changed surgeons! My new date was October 8. My tumor was about 9 cm. It is a long wait but I learned so much during those three months. Best of luck and keep us posted!

Rae

Glenn8962
Posts: 8
Joined: Oct 2011

MMMMMMMMMMM now you have got me thinking, steak and kidney pie was a favourite of mine, but I dont think I could come at it now. I must admit I sat here (in Australia) and laughed at your comments.
Cheers mate, Glenn

Glenn8962
Posts: 8
Joined: Oct 2011

Thanks for the info. Sound as though Laproscopicy is the way to go and will certainly discuss this with my Urologist. Also good comments about a cancellation list. As mentioned in other posts thanks for the input to these dicussions as it helps so much.
Take care, Glenn

niprut
Posts: 23
Joined: Jul 2011

Hi Glen,

I am in Victoria, Australia, and had my surgery June 2010. I was scheduled for late July but my body decided otherwise. I was occupied with all things of a tax nature at the time being the end of financial year, and holding an admin position at the time. That kept me busy. Anyway in the end surgery was bought forward, but given my age then 42.. and general good health otherwise, my urologist was not in any great hurry either. I also believe he was 'choosy' about where he wanted to operate and had to fit in with the hospital schedule. Mine was laproscopic and all seems to have gone well. Please do not rush your recovery, I was told I was 'young and fit and recovery would take no time at all'. It was actually 12 weeks before I was ready to go back to a desk job. I was lucky, I have great supportive bosses. Good luck, take care.

Jo

Glenn8962
Posts: 8
Joined: Oct 2011

I am also from Victoria, actualy from Geelong,(you may know of the town if you follow football...lol). I am due to visit my Uro in 2 hrs and hopefully have the hospital date, otherwise if not satisfied my Oncologist said to contact him immediately to organise another Urologist who will perform the OP within a fortnight. So many people have advised me about the recovery period and its something (against my nature) to take it slow. I havent been a good patient in the past, getting on with things well before i'm ready but I realy need to heed everyones advise on this one.
Thanks Jo for your input, good health and take care,

Glenn

niprut
Posts: 23
Joined: Jul 2011

Hi Glenn,

Fellow Victorian and Geelong is my team :-) wooho what a year! I hope they are yours too! I hope the appointment went well and that you have your date set? I was reminded a number of times that I did not have a procedure done, I had major surgery and so will you. Again you will need to be gentle with yourself, because you really will feel it when you have pushed yourself. A good day will not mean go and take on the world, it will mean you have been doing the right amount of exercise and to keep up that pace.

Let us know how you are going and feel free to ask any questions.

Take care and keep moving.

Jo

Glenn8962
Posts: 8
Joined: Oct 2011

Hi All,
Just a quick update... finally surgery due for Thursday 24 November, 2 days away. As much as I want it out asap, now i'm getting anxious and not looking forward to the next few days. Thanks all for all your posting here and with other kin, really comforting communicating and reading all the posts. Good health to everyone and take care.

PS if anyone knows where I could sell a 2nd hand kidney with a 6cm RCC, please let me know.. this may off set some of my costs...lol

Glenn

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Glenn -

You will have surgery on the US Thanksgiving holiday, SO, in addition to all the things I have to be grateful for, I will also give thanks that you are getting your surgery done. Mine was in July and I'll reiterate what everyone has said - take your time with recovery.

As far as your cancerous kidney - no thanks, I'll pass. I had one of my own and didn't want it, either. :)

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

Sending up prayers for peace and healing for you this week.
Rae

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Glenn,

It will be over before you know it and you will be back to leading a "normal" life very soon. You seem to have a great sense of humor and that will serve you well in the coming weeks, stay positive and keep us posted.

Hang in there,

Gary

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

I remember the night before my surgery I did not sleep a wink,I could hardly wait to get the cancer removed from me.I will always consider the day of my surgery as a start to a new life and now as a result I love everyday I wake up ,heck I don't even complain about the weather anymore,and I live in Chicago.

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