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Waiting time

Scottie22
Posts: 23
Joined: Apr 2013

Diagnosed with rcc April 5.  Had an ultrasound for another reason which spotted a mass on my left kidney.  CT scan followed a week later then my appointment with urologist.  He wants to do a radical because even though mass is fairly small - around 4cm where it is positioned is his reasoning for radical.  Problem is I haven't been able to get  a date for surgery.  They gave me a tentative of May 9 which I was told yesterday won't happen so back to square one. Even waiting until May 9 seemed an eternity as I have been in pieces with worry.  The sudden diagnosis was so much to take in but I tried to remain hopeful that it could be taken care of (after I decided that I might survive the surgery).  Can anyone help me to cope with the waiting.  The best I got from the scheduler yesterday was that she is trying for the May 10 but that's a Friday and 'he might not want to do a major at the weekend'.  She is supposed to call later today to let me know.  I had such faith in the urologist when I saw him but that is now rapidly fading, maybe wrongly.  I am just so scared that this thing which I am told is contained will get out.  I am, or have been in great health and had no reason to suspect this bolt from the blue.  Just can't feel positive about anything whie in this limbo. Any advice will be so welcome.

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

Hi Scottie,

First of all, the fear comes with the territory. Its a natural and very sane reaction. Youre still in the initial phase of comprehending and understanding what has happened to you. Its going to take time, and the best you can do is to share your fears and thoughts. Here, with friends, family, whomever you feel secure enough with to do it. Be prepared that the mental healing and recovery is going to take a lot longer than the physical part.

 As for the waiting time, yes its tough. Once diagnosed, you just want your blind passager off your ship. We all know that feeling.

Some words of comfort though; The absolute majority of RCC grows very slow. The risk of waiting 30 days or so for the nephrectomy is quite small. On top of that, given that your tumor is quite small, T1a or T1b, the risk of future re-occurrence is very very small.

Not easy to be or feel positive at this point, I know, but still, look for those positive points that ARE there and use them as a mental leverage to ease the wait.

Good luck, and keep posting and asking whenever the need arises. 

/G

 

Scottie22
Posts: 23
Joined: Apr 2013

Thank you so much, G - I can't tell you how much what you have written means to me.  I have difficulty talking about it to my husband as he, poor man, is suffering also.  Keeps telling me I must eat and keep my strength up but i have to force food down at the moment.  I am sure they understand in my doctor's office but they have many other cases to deal with and when I despair I think they have maybe overlooked me.  Silly isn't it?

 

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

You mention your husbands suffering, a bit unclear to me if he has his own ordeals or suffers due to your situation?

And silly? No, youre not silly at all. Suddenly being diagnosed with cancer throws even the strongest persons off their feet. To start questioning everything and feel alone and insecure is just natural. 

Fearing that the doctors have missed something, or are taking something that is dead serious to you too lightly, is not silly. Rather its a sign that your doctor(s) havent been good at informing and/or re-assuring you about your situation. Call them, ask them, its their job, not you being silly.

/G

ps. Try to get your appetite back. A healthy diet and physical form is going to help you lot.

Scottie22
Posts: 23
Joined: Apr 2013

G, husband has health issue (AFib) but his treatment is keeping him stable.  He is worried about me and feeling anxious as this thing came out of the blue.  One minute we were excited and preparing for a home remodel and looking forward to son and family visit in June.  They live in England and we live in the US - another reason for the feeling of being alone I think. Do hope I hear from scheduler this afternoon as promised, if not will contact her again.

J.

icemantoo's picture
icemantoo
Posts: 1548
Joined: Jan 2010

Scottie,

Being told you have Kidney Cancer and than major abdominal surgery right out of the gate is enough to scare the sh.. out of anybody. It sure scared me when the CT scan I got back just after memorial day 11 years ago showed the little buggar. Surgery was not until 8.1.02. My wife tried to relax me by taking me to a B & B on the Canadian side oh Lake Huron for July 4th weekend. We went to the nicest restaurant in town (a British Pub) which brought all of the specials out on a cart. You guessed it...Kidney Pie.

Anyway 11 years later it is easy to laugh off, but not then. When they took the little buggar out it was  4.2 cm.

The surgery is not fun, but the alternative is worse. Those done more quickly after diagnosis usually have bigger tumors. This is one line you do not want a pass to get to the front of..

What you are going thru is normal. We all went thru the initiation to join the club. One honorary member was allowed to join the ckub by having the surgery as a result of a mortorcycl accident without any Cancer involved.

 

Keep all your thoughts positive. There are many on this board whose diagnosis is not as fortunate as yours, yet stii maintain the most positive attitudes.

 

Icemantoo

Scottie22
Posts: 23
Joined: Apr 2013

Hello Iceman

I have been reading a lot of your posts before I plucked up courage to put anything out there myself.  You are always so full of hope and encouragement you just seem to know the right words to use.  As you would expect I have been all over the Internet looking since April 5 and not all was helpful and I was kicking myself for even going there. Yes I am lucky that this was caught 'by accident' so to speak in early stage but I am still very raw with the shock of it.  The CT scan was read as 2.7 cm but urologist disagreed and said more like 4 cm.  However he put 'available' on my notes for surgical scheduling which I take to be good news, no rush.  What totally struck me in your post was your remark 'this is one line you don't want to go to the head of' wow - EXACTLY!  So deep breath, with that in mind and G's good advice I plan on picking myself up and will wait patiently until I can get this thing taken care of. So grateful.

Scot

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

...remodelling you mentioned and your sons visit in June. Will help get your mind off the blind passager youre carrying. Check back in here if you have questions and/or updates :-)

One word of advice from now until surgery btw, take it or leave it if you want: Dont survey the web too much or read a lot of case stories in here. Its just gonna make you focus on the wrong things and most likely fill your head with a lot of "what if´s", and 95% of it wont apply to your specific case anyway, since the full picture isnt known until the histology is available.

Get the surgery over and done with and then, if you want to learn more about the bloody disease, go deeper into reading and understanding. Just a very personal advise based on my own, and some other RCC patients experiences.

/G

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Most of us have been here with the wait time.  The good news is the long term outcomes is not dependent on the delay to sugery, at least for up to three months, per a study I remember from the web (I can't find the reference right now, but google is your friend).

Cancer is scary.  But, for a 2.5-4 cm tumor, surgery is the probable cure.  90+% cure.  

With that said, I basically turned into a backet case starting May 1, 2012 when I heard the words, "there is a mass on your kidney, and it has to be dealt with".  I would like to say after my seven week wait, I had the nephrectomy and everything was fine, but the recovery was really hard.  I still have pain.  

In my one year here, I have seen countless posts like yours.  Most of them have good outcomes.  

I posted just like this last year.  

 

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Scottie,

I have just had a partial nephrectomy on my right kidney. My tumour was around the size of yours sitting right on the top of my kidney. I knew there was a problem from December but it took a little while to get it diagnosed correctly. I then had to wait for the operation date, which was at the end of March. It is very hard to deal with, cancer is still a very scary concept. It was quite a wait but I tried to keep my mind on other things as much as possible, until the date became closer.

It is funny how your mind switches the goal posts on you though. My initial fear was the cancer, but once faced with the op my mind changed tactics on me, I started to fear the op. However, thankfully now my unelcomed house guest has gone, and I am just looking forward to getting back on my feet.

When we are faced with a problem of this magnitude we have a tendency to think that we are not strong enough to face it. In my experience we are always proved wrong, we go into survivor mode, and when we look at it retrospectively there is no one more surprised that we came through. You will deal with it and you will come through it, never doubt that. Try to stay positive and always remain hopeful.

All the best

Djinnie

 

 

Scottie22
Posts: 23
Joined: Apr 2013

I can't tell you just how much you all helped me yesterday when I was so down in the dumps.  Everything that was said helped me to put things much more into perspective.  I had an email from my doctor's office yesterday evening (outside of office hours would you believe) telling me that Friday May 10 is the big day.  I would be lieing if I said I am not apprehensive about the procedure but I intend to go forward with my life and take a much more positive attitude. I anticipate ups and downs but will be summoning the strength from you all to help.  I have Tai Chi classes weekly and have meditation CD's and information to work on - oh and yes the remodel starts this Friday - talk about timing! And I will be staying away from any internet sites other than for fun for the forseeable future.  I want to come back here after the event and try to be an inspiration to others as you have been to me. Bless you all.

J.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Scottie,

Well you sound like you have enough things going on to keep your mind occupied. All the best for you op, not too long a wait, it will fly by and you will soon be on the other side of it.

 

Best wishes,

 

Djinnie

Scottie22
Posts: 23
Joined: Apr 2013

Well all the worry over waiting proved to be for no good reason as my op was brought forward to May 1 due to a cancellation on my doctor's schedule.  All went well and doctor is optimistic that it is all gone.  Tumor was right in the middle and with no sign anywhere outside.  I am so grateful for everything, a wonderful surgeon,great nursing care and now back in my own bed.  I an working on my positivity, I always tend to look on the black side, but must concentrate on getting stronger and ready to welcome my son and family visit at the end of June.  Looking back this whirlwind only began April 4 following my CT scan and now Here we are.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

I am so pleased to hear that everything went so well. The worst part is always the anticipation, we frighten the life out of ourselves. As you say it has all happened in the blink of an eye. You can now concentrate on making a full recovery, getting on with your life and enjoying you family.

All the best

 

Djinniex

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

..a fitting response here and nothing else, so here goes to you Scottie: Smile

/G

 

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Good to hear all went well Scott. My partial was also on May 1st. Hang in there and feel better!

icemantoo's picture
icemantoo
Posts: 1548
Joined: Jan 2010

Scot,

 

Now that the surgery is over that didn't hurt, did it?  Yaeh. Get yourself mended so that you can help me with the Newbies down the road.

 

Icemantoo

 

 

foxhd's picture
foxhd
Posts: 1910
Joined: Oct 2011

Good job Scottie! Now get the emotional part in check. Make us proud.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Glad to hear such a positive report back from you!  It sounds like things are well!   am very pleased!  One week from right now, I'll be on the table, following the path you laid!  LOL

Congratulations

 

Bon Chnace on revovery!

Michael

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

"Bon Chnace on revovery!"

Been experimenting with the anaesthetics in advance?!  By the way, Michael, where are they sourcing the extra-long operating table?

Do as well as Scottie - that will be fine and I reckon you'll manage to stay positive all the way.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Actually, my wife will update on the day of surgery.  The local Parachute rigger school is lending a folding table! Cool

 

These cloven hooves make typing dicey at times! Tongue Out

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Michael,

I know that there is plenty advice about drinking plenty of water post surgery. I was advised by my surgeon that I should make sure I drink plenty during the week before. Apparently it makes  it easier all around if you are hydrated prior to surgery. It may just be just a French thing but it makes sense. 

I know you are taking lots of notes, just wanted to pass it on.

 

All the best

 

Djinnie

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Laughing

Scottie22
Posts: 23
Joined: Apr 2013

Wishing you all the very best for your surgery.  Everyone is different but I can tell you that everyday I have made progress and yesterday I was up and about all day just quietly going around.  Am not rushing around but just letting my body tell me when to rest. So one week out I feel like a new person.  So take good care of yourself, I will watch for your wife's progress report post surgery.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Scottie, It is good to hear you are doing so well, look how far you have come in a matter of weeks. I expect you are getting excited about you families visit, that in itself will spur you on to full recovery. I hope they are coming over to some warmer, dryer weather because it is in short supply here. 

All the best

Djinnie x

Scottie22
Posts: 23
Joined: Apr 2013

Hi Djinnie

Your optimism is so refreshing, yes everything has happened at a mind spinning rate and I continue to gain strength every day.  Reading your posts has helped so much as you have also recently been there and sound great.  I hope to help others in the same way as time goes on.

We are excited about the family visit, it's amazing how much retail therapy helps as well.  They should experience quite a change in weather as England has had a pretty severe winter and they will be experiencing an Arizona summer.

All the best

scottie

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Scottie,

Have you got room for one more? I am sure I can find somewhere to park my husband.

 

Djinnie x

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