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Scared to death

marie_lynn58
Posts: 4
Joined: Apr 2013

just need to vent.. i learned 3/19/2013 that i have RCC and need surgeyr my tumor is small approx 1.5m. preparing for the surgery i am sceduled for pfts may 7th  then will find out when the surgery will be and i am really scared.reading your comments have helped hindered me i need to know this stuff .  think i am more scared of the pain than anything i have no tolerence for pain.i havent even cried over this im afraid to show my husband my fear.. im afraid i will crack on the way  to the surgery room.. what am i in for. i do work in a hopital kitchen how long is the realistic time off work ? ... feel free o comment...

icemantoo's picture
icemantoo
Posts: 1453
Joined: Jan 2010

Marie, 

At 1.5m (about 48 inches)  if accurate your tumor is one of the largest known to man or woman. Let me assume that it is 100th  that size which is 1.5cm. Any tumor in the Kidney under 4 cm is considered small and the surgery alone is as close to a 100 % cure as you can get. As far as pain, that is why they have pain medication. No pain, mo gain. That is what you have to do. The alternative of not having the surgery is less fun. It spreads over time and what happens then is not fun.

 

As far as getting back to work in a kitchen you may want to try it after a month. However there is a big difference between handling your job in  a month and being able to handle it 8 hours a day after a month,

 

We have all been thru this and the words Cancer and surgery are enough ti scare anyone. Your odds for a full recovery are excellent, However every night  open the window and sceam I an going to kick Cancer on its ass 5 times and you should be fine,

Icemantoo

 

 

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

I wouldn't want iceman as my tailor - 1.5 m. is approx. 60 inches!

How old are you Marie?  Unless there is some exceptional and very good reason, no-one should even be considering surgery for you.  They should be taking the 'watch and wait' approach - scanning you at regular intervals and seeing whether the tiny lesion grows or not.  There is virtually zero risk of it spreading (if it is cancer) until it's at least ten times the volume it is at present. 

Without a good excuse, it would be the height of irresponsibility to operate on you at present - it would put you in a queue ahead of people in much more need, it would absorb valuable resources prematurely and it would subject you to an ordeal, time off work, and interruption of usual family life when you don't need it. 

You might, sometime in the future, need the surgery but you might not.  Continuing surveillance at the present time won't involve taking any unnecessary risk - unless there is some special reason for needing emergency surgery.

todd121
Posts: 496
Joined: Dec 2012

Hi TW,

I probably sound like a broken record, but location is extremely important apart from size. Even a tiny tumor that is up against the renal vein (for example) may need to be removed ASAP. You've made an assumption that the tiny tumor is in one of the extreme upper or lower lobes and fully encapsulated with plenty of margin to grow.

Hopefully, that's the case. Also, hopefully, even if Marie does need surgery at some point, with such a small tumor a partial nephrectomy or some other kidney-sparing surgery would work for her.

Best wishes,

Todd

marie_lynn58
Posts: 4
Joined: Apr 2013

u really made me laugh u r correct 1.5 Cm that diffently was a typo..thankyou for the words of incouragement.

 am overeacting...

 

 

 

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

Hi Marie_Lynn,

Now this might sound completely heartless but "YOU CAN DO THIS LADY".  You are stronger than you think and there will be no pain, they really do manage it very well and to be honest its more uncomfortable than painful...if that makes sense.  Do you have any children?  As for work well I am returning this week after my op on the 14th of January.  Take your time and concentrate on your recovery......go back when you feel you are ready and not before.....Venting is good and actually is good for you.....

Eims x

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

Marie_Lynn,   It is amazing to find out how strong we can be when we have to.  This will be one of those times for you.  Depending on several factors (location location location), you have to deal with this.  Talk to your Dr about the (rational) fear of pain.  Some antianxiety medicine can be most helpful.  You would not be the first persion on it.

But, this is a temparary state.  I am confident that you can get through it.  Just remember, the pain is temparary.  Getting the cancer out is perminent (we hope).

 

foxhd's picture
foxhd
Posts: 1856
Joined: Oct 2011

Eims is correct. You can do this. Actually you have to do this. You don't have much choice. Your hospital personnel will take GREAT care of you. Let that be the least of your worries. Make some wonderful plans for your recovery. It will be a great time to enjoy the beach, the mountains, or old friends. Plan to do something that you have been neglecting.

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

Todd, I stand absolutely on what I've said (and I haven't made any assumptions at all).   I said that surgery shouldn't even be considered at this point UNLESS there's a very good reason for it.   Marie doesn't have (or hasn't mentioned) an explanation of why anyone has suggested surgery.  It would be unusual for there to be any real risk, with such a tiny lesion, in following the current expert advice which would be for 'watch and wait' rather than surgery.  

Accordingly, the first thing she needs to do is to ask why surgery is envisaged.  If, and only if, a convincing argument is made should she have surgery at this time.  If she needs surgery, it will be very little different in a few months time (or even a few years if the lesion were to grow at the usual slow pace).

todd121
Posts: 496
Joined: Dec 2012

It is a small tumor at this point and I'm not disagreeing that the wait and watch approach might be the perfect approach. One of the considerations is a patient's anxiety with this approach. Some people (me, for example) might not be able to be ok with waiting and watching. Of course my tumor was larger, but I was just shy of grabbing a table knife and doing it myself over the weekend! :)

Hopefully, the doctor is providing good care and advice through this difficult decision. The important thing is that all options are considered and weighed and it's certainly terrific that we all offer our 2 cents in case it wasn't brought up by the doctor(s).

Best,

Todd

I am alive
Posts: 214
Joined: Jul 2012

Marie,

   Don't fixate on the pain. You will be fine. They get you up and walking the day after surgery! Not saying its a stroll in the park but every day you walk farther. Everyday you have less pain. And those pain meds really work! As for going back to work in the kitchen, if your job requires you to stand for most of your day I think you will need more than a month off. You will have to play that by ear, but dont expect to rush back. As you can see from the conflicting opinions above regarding even the need for surgery, you should get a second opinion. That's always a good idea. Take a deep breath. Your tumor is small. That's a REALLY good thing!

todd121
Posts: 496
Joined: Dec 2012

You don't mention how they know it's RCC? Is it from imaging? Or did they biopsy it? Where is the tumor located? Generally speaking, they won't even be able to tell it's RCC until it's removed and a pathologist examines it. That was one of the things that was frustrating to me. My surgeon (a respected urologic oncologist) was saying even going into the surgery that there was a chance it was something else besides RCC, although at 6.8 cm and from the imaging he was pretty sure it was cancer. There was a small chance it was benign (something like 5% I think).

You are able to do this. It will be fine.

For me, I took 6 weeks off and I was glad I did. No lifting, by the way, for the first 4 weeks. You won't be lifting any heavy pots for a few weeks. Standing and walkign for me was actually better than sitting, which put pressure on my abdomen. However, I had some pretty severe fatigue for 6-8 weeks.

The pain was really not too bad. I can't tolerate opiates, they make me nauseous. On the second day I went home with a prescription for tramadol and I think within 3-4 days I was off them completely and not taking any pain medication. It's more discomfort than pain, I'd say. Maybe a dull ache or a dull ache when you move.

Let us know your progress. We'll be cheering for you.

Todd

marie_lynn58
Posts: 4
Joined: Apr 2013

my tumor was first noticed in 2010 mm in size it has grown.to 1.5cm i am being told that  since it is growing it is acting like RCC,

AND probaly 90%postive.biopsy out to close to spleen and pancrease etc...it locate at the upper pole of  left kidney though it is smalll  & is growing doesnt make me feel good.i think i want  out ifit is still growing..thankyou for your input. it  helped i need to toughen up.wish  luck first i have pfts week then probaly after that it will be scheduled..

thank you

marie

was found on ct scanwith contrast  then on mri  kidneys with contrast also

 

 

 

 

 

 

 

 

 

todd121
Posts: 496
Joined: Dec 2012

It sounds like you might be a good candidate for kidney sparing surgery like a partial nephrectomy. Are they doing a partial or a radical nephrectomy? If they aren't doing a partial, why not?

Todd

todd121
Posts: 496
Joined: Dec 2012

So you have observed this for 3 years? And the growth rate is consistent with RCC?

I can understand your anxiety. I am interested in knowing why they decided to act now? Or was that your decision? And also whether you will do a partial or radical, since it seems with such a small tumor that is squarely in an upper lobe, that you should benefit from keeping perhaps 1/2 or more of your kidney.

Todd

marie_lynn58
Posts: 4
Joined: Apr 2013

Todd, the urologist said i would benefit with a open partial nephrectomy, to be honest i dont think anyone was watching it. i wasnt told that it was there until march when i had a chest ct for some below the shoulder blade back discomfort i was having,i have a history of lung colladpes due to numerous blebs on my lungs so i wss thinking my left lung was leaking air. the ct showed a spot so my gp ordered a mri with contrast. then i was refered to a urologist for possible biopsy thats when he said it has been growing since 2010, so now i am to have pfts to make sure my lungs can handle 5hour surgery. i will find out when the surgery will be after may 7th. he said since it has changed it would be best to move forward or i could wait until it has gotten bigger, with no guarentee

it wont spread. i did ask him if his mother was in my situation would he want mother to move forward with surgerysurgery.. he said yes i would recommend her to have surgery.My husband wants me to have the surgery .i researched onlineonline for smsll tumorand it seems the norm is open partial. so thats what i am doing.  long story sorry.

thankyou

Marie

 

 

 

 

 

 

 

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

Much less invasive.  But not everyone does it that way.  I would find a surgeon / urologistis.

 

THe open will be more painfun,with a longer recovery time.

todd121
Posts: 496
Joined: Dec 2012

I've been seeing both kinds recommended. Earlier I would have thought a laproscopic would be the way to go, but then one of our people here (Mike) had a partial done at UCLA by a very good surgeon who also recommended open. There might be a reason open was recommended over a lap, other than the surgeon doesn't do those. You might ask and you might seek out a surgeon that does laproscopic partials.

Partials are tricky, from what I understand. It's a much more complicated surgery than a radical.

My radical was supposed to have been done with a laproscopy. I was suprised at not only how many scars I had, but how large the primary scar was. I had 5 scars, and the largest one (where the kidney was removed) was about 6". Since I've had a hernia repair and an appendectomy all on that side, I look like a war hero in my bathing suit.

Todd

Eliezer2
Posts: 56
Joined: Aug 2012

Take it from me, the most squeamish and cowardly patient ever invented.   Sharp pains are not really much of a problem.  You are sore after surgery but really more a nagging dull pain that goes away after a few weeks.  Try to get off morphine as fast as possible and strong Tylanol should be all you need, and even that for maybe a week or so.

 

I would not hurry back to work but within a few weeks, let's say 6-8 at most, you should be completely functional.

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

When I had my radical nephrectomy almost 2 years ago I was surprised how much pain I DIDN'T have! The first day wasn't aware of too much as fairly doped up but then went on to use PCA (personal controlled analgesia) the second day and not much else after that - paracetamol only required for a few days. I had extensive surgery and have a 30cm scar right down my abdomen as a souvenir. 

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