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The waiting is the hardest part

mickf
Posts: 15
Joined: Aug 2012

Finally went to see anaethetist on 13/09/2012, thought that the operation would be imminent, only to be told that I was on the wait list for NOVEMBER. I can live with the fact that I have RCC (I think) but the wait for the operation is the hardest part. Quite frankly I am terrified of the whole procedure. It is only the good news stories on this site andf the encouragement of others that is keeping me going

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Mick,

Absolutely, the waiting sucks. But look on the bright side, it's better to be placed on the wait list than bumped up to the top of the list because of a dire emergency.

Little surprised you met with the anaethetist. I don't recall John meeting with the anaethetist until the morning of the surgery.

I know it's hard to believe it now, but come Christmas you'll be asking yourself why was I so worried? You're living with Cancer, not dying from it. Let it know you're in charge and calling the shots.

Alice
Caregiver to John
Diagnosed 10/14/2011/Stage 4/Grade 4 Clear Cell
IL-2 January/February 2012 (response mixed/discontinued)
May 2012-Current - BMS936558/Votrient Trial (Hopkins)

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Mick,

As I told you earlier I expect a full recovery based upon your diagnosis. I waited over 2 months not fun. Like you I was scared of the surgery. It was not fun, but is much better than the alternative. A month before surgery my wife took me to a Bed and Breakfast on the Canadian side of Lake Huron. It was sort of relaxing, but I could of done without the dinners displayed at the British restaurant for dinner. I was not in the mood to try Kidney Pie.

After the surgery and recovery you can laugh at these little things knowing that you beat the big C.

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mick, don't sweat the small stuff (like cancer)! Stick around here and watch the likes of Foxy to get the necessary ATTITUDE.

For a healthy approach, remember Newman and Redford in Butch Cassidy and the Sundance Kid. Pursued to a cliff edge by the posse, the only possible escape is to jump into the chasm of a river hundreds of feet below. Sundance says "I can't swim", to which Butch replies:
"Are you crazy? The fall will probably kill you." They jump.

Now THAT'S attitude!

November's not that far away - and you're gonna go for it!

MrVic
Posts: 1
Joined: Sep 2012

First of all I'd like to say: Thank You all for being here!
Finally I might get some answers.

I went in for an ultrasound $ for a hernia 8/28/12.
A 7.5cm mass was detected at the top of my left kidney.
I was referred to a surgeon $ who referred me to a urologist $$ who
sent me for a CT $$$can which I had 9/12. Now according to the radiologist a
needle biopsy $$$$ is in order. Originally the urologist said the tumor
would have to come out regardless and seeing how I'm paying out of pocket why bother with a biopsy.(good bye nest egg)

My side is just barely starting to ache. What I'd like to do is skip the "up to 10 thousand dollar" biopsy and move back to my home town where I'd be eligible for affordable pre-existing condition insurance in about 2 and a half months. How fast do these things grow? Should I risk waiting or just go ahead and wipe out all my friends and family's savings?

I get the feeling some of you have waited months anyway.
Of course I'd wait months to get the insurance then wait again for procedures.
I'm rambling. This is all new and confusing.

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

I guess the biopsy will tell if it needs to be dealt with promptly or not. Dunno. Would some docs just leave it alone if benign?

My understanding is the larger the tumor the more likely to metastasize.

Mine was large so they wanted it out ASAP. (I got a biopsy.) My choices for surgery were in 2 days or 2 weeks (the surgeon was going on vacation). I chose 2 weeks and spent the time getting into shape. This included 100 situps and swimming a mile. Turned out it paid off as the surgeon said it was so great to sew up the stomach muscles, some people are like sewing jelly.

You are lucky it is at one end of the kidney, they may be able to just lop it off. My lesion was large and in the middle so the kidney+lesion had to come out.

angec's picture
angec
Posts: 621
Joined: Mar 2012

If at all possible I would have the surgery soon as I could. Depending on size it makes a difference. if you qualify for insurance then when you get the bill you can apply for help and they may pay it if you qualify. seek out another doctor if November is the only time. If not then you have no choice and you did what you could. Everything will go well. There is so much wisdom on this board coming first hand. Are they doing open surgery? You will do fine! Prayers that all goes your way! By the way, skipping the biopsy sounds feasible to me also. If it were me at this point i wouldn't waste 10k on that. Funny thing, my 79 year old mom requested a biopsy for her then 4 cm mass and they said it was a waste of time since the tumors have to come out anyway! Just thought i would mention it to you. Please keep us posted.

Bubbs21
Posts: 43
Joined: Jul 2012

Hi Mick,

I too am on a list and awaiting a date for early November. My scan was ordered by my cardiologist in April. The scan occured on May 31st. Due to holidays, I met with cardiologist on July 19th to recieve the results of a myriad of tests and was advised of the 2cm solid mass in my left kidney. Referral to urologic oncologist and consult on July 31st. Due to the size, and available OR time, I was not deemed urgent and advised I would be booked in early November. I have had my pre-op procedures and am awaiting a call to go.

The good news it is small and not urgent. It was really tough, in the beginning and my anxiety levels were unusually high. It has been a difficult year in so many ways. The good news is I have shifted my focus from waiting and obsessing to living...I have:

- continued to manage my BP to a normal range;
- sought out support from my doctor for the anxiety and now use cipralex;
- focus my energy on work and family;
- enjoy evening motorbike rides with my hubby (it will be too cold to do so soon);
- started to renovate a house/cottage on weekends for personal use and rental next summer;
- planning a family trip to Punta Cana in October....

I will be broke by time the surgery happens....but we are living life to the fullest. Do what you have to, but don't let the wait rob you of precious time with family and friends. You choose your attitude. YOU can do it.

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

Way to go Bubbs,

You are setting a great example and going about it in exactly the right way. The busier you stay with living the more positive your attitude becomes and the cracks that let those inner demons in get smaller and smaller. November will come and by Christmas it will be a memory well on its way to being forgotten. Good for you!!!

Keep on keeping on,

Gary

Bubbs21
Posts: 43
Joined: Jul 2012

Well.....the journey of blood pressure problems that lead to finding the solid kidney mass started last February. I am in the home stretch if the pathology matches current diagnosis. My partial laproscopic nephrectomy is scheduled for Nov 7th. Feels great to have a date.

Wishing ewveryone well in their journeys.

adman's picture
adman
Posts: 260
Joined: Jul 2012

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icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Bubbs21,

The high BP cuts both ways. While it lead to your early diagnosis it is also a concern in the future. While you have a near perfect diagnosis on the RCC the loss of a kidney or partial kidney decreases your kidney function and a deceased kidney function adveresly sffects heart issues. Look into seeing or consulting with a nephrologist post surgery. Of course if you can get your BP down to 120/80 and keep it there you can ignore everything I said.

Icemantoo

Bubbs21
Posts: 43
Joined: Jul 2012

Thanks Iceman.
Although my BP issues were intially about extremely high BP (203/108). It reversed it self last spring and I have been dealing with very low BP where I have had stability and memory issues e.g. as low as 77/44. I finally have a BP the few weeks in the 110-115/64-68 range. I am hopeful that the yoyo will not continue post partial neprectomy. I do have appointments with a cardiologist, nephrologist and urologist in the new year to monitor BP and kidney function. If there is any one with RCC who has had similar experiences with a swing in BP, would be good to hear from you.

Living for today, planning for tomorrow :)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Been so long ago I can't remember what it was like to have a date!

Glad to know you can settle down now Bubbs and we've seen you've got all the issues taped and managed. Nov. 7th will be a breeze. (Wow, I see I'm on a scan bed in 11 hours time and I'll have had a third open op before you have your partial, lap neph.)

love_of_my_life
Posts: 28
Joined: Jul 2012

Mick,

I couldn't agree more with the wait. My wife Holly waited 2 months before her surgery, just like you and the days seemed to drag by. I seemed more terrified of the surgery than her.

The first two days after the surgery were not pretty but they were not horrible either. On the third day, her energy started to return and today (5 weeks after the surgery) she is almost 100% back to normal.

We found that explaining everything before the surgery to friends and family was the most difficult part. People really do care, but I think for many of them, their natural tendency is to think the worst. Explaining to people that there are procedures, treatments and true HOPE just seemed to fall on dead ears sometimes. When we got closer to the surgery, both my wife and just asked people for their prayers instead of going through the long explanations.

Today, when people see Holly for the first time after the surgery, they are almost dumbfounded that she looks and feels so good (Holly is a "fireball"). Her recovery has MADE up for all of the explanations we could possible give people over the phone that that RCC can be beaten. It WILL be the same for you.

I know that this one of the scariest and most uncertain times in your life. Let friends and family help you. You WILL get through this and you will come out stronger than ever.

You will be in MY prayers on a daily basis.

Tom

Bubbs21
Posts: 43
Joined: Jul 2012

I appreciate and thank you for your perspective about explanations to family and friends. Wishing you and Holly, health and happiness.

mickf
Posts: 15
Joined: Aug 2012

First of all, let me apologise to all you diligent people on this site for my tardiness in updating my condition. Quick recap, diagnosed in August 2011 with a tumour in the right kidney, underwent surgery to remove the whole kidney in Novemebr 2011. I was extremely nervous about the impending surgery, but with help and guidance from the good people on this site I went for the op with lessened trepidation. The operation went smoothly, no pain afterwards thanks to a great pain management team. I was in hospital for a week. Went back to the specialist in January for follow up. The tumour was 6.5 cms in length fully contained within the kidney although the specialist was a little concerned about my bladder. Had a bladder check in January which came back all clear. The specialist is not overly concverned about the nodes in my chest, these will be monitored at my next scan in May. He was pleased about the operation and informed me that as far as he is concerned, I can consider myself free of the cancer . So my message to all you newbies on this site with trepidations about impending surgery is DON'T WORRY. The surgeons know what they are oing and the pain management teasms are fantastic. Just remember to follow their advise and don't try to overdo things no matter how you feel for the first 2 months.

I am just thankful that mine was caught at an early stage and I can now look forward to many more years on this earth .

Good luck to everyone awaiting either the operation or results.

 

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

We are pretty much on the same schedule.  MRI for heriated disk " incidentially" found an 11CM tumor on left kidney in September.  No symtoms or anything. Not even a single sick day in 30 years. The operation went fine but mine wasn't so early  pt3A with sinus and mirco vascular invasion and apparently was agressive and called "Furhman Grade 3". I am frustrated by the fact that all I can seem to do is have a scan every four months for a coule of years and hope it doesn't reappear.  From reading this board that seems much worse then the surgery and makes me alot more neverous then the surgery. So I agree with you about the surgery,it really wasn't so bad and I was back at work in a few weeks. I am not sure we are "cured" however.  

 

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

We are pretty much on the same schedule.  MRI for heriated disk " incidentially" found an 11CM tumor on left kidney in September.  No symtoms or anything. Not even a single sick day in 30 years. The operation went fine but mine wasn't so early  pt3A with sinus and mirco vascular invasion and apparently was agressive and called "Furhman Grade 3". I am frustrated by the fact that all I can seem to do is have a scan every four months for a coule of years and hope it doesn't reappear.  From reading this board that seems much worse then the surgery and makes me alot more neverous then the surgery. So I agree with you about the surgery,it really wasn't so bad and I was back at work in a few weeks. I am not sure we are "cured" however.  

 

mickf
Posts: 15
Joined: Aug 2012

Hi Don,

I did not mean to imply that I am cured, simply that, I have no immediate concerns. I realise and have been told by the specialist that I am now at a higher risk of contracting cancer again at a later date, but each time I go for a scan which comes back clear means that I am 6 months closer to the magic 5 years.

Mick

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Mick,

 

We all like good stories when things go according to Hoyle.

 

Icemantoo

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