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Newly diagnosed, surgery date already

Hiberniangirl
Posts: 19
Joined: Sep 2013

Hi, I'm new here and awaiting a laparoscopic partial nephrectomy on my left kidney for a 3.6 tumour. The tumour was found accidentally like so many others on this site but its all been so sudden and I'm just about getting my head around it. I've been told its contained which is good news but am still nervous and anxious about the operation which will be on 26th September. I'm glad to have found this site with such support. 

Hib

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

Where is your op to be performed, lassie?

Djinnie's picture
Djinnie
Posts: 912
Joined: Apr 2013

Hi Hib, 

I am sorry to hear your news, it's not easy to take in, I know!. It comes like a bolt out of the blue to all of us.Are you having Robotic surgery? I have had surgery twice, the first time was Radio Frequency and the second time Robotic. I waited six weeks for the last one, at least you don't have too long to wait. I know you feel scared and stressed, but if you need someone to talk to or advice about the procedure we will be here for you. There is always someone on here, as we live in many different time zones. I assume, like me, you are in Europe though!

 

Djinnie x

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Hib,

 

Who wouldn't be. Being told you have Cancer and than major surgery right out of the gate.  At 3.8 cm you are looking at a full recovery, but that initiation to our club (the surgery) not fun.

 

All of us have been thru this and before you know it you will be giving advise about your new beauty mark.

 

Icemantoo

Hiberniangirl
Posts: 19
Joined: Sep 2013

My surgery is to be at St James in Leeds under Mr J Cartledge. Don't think it's robotic though

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

3.6 cm and encapsulated - doesn't get very much better than that and you're getting NSS (nephron sparing surgery)which is further good news. 

Whether or not it's a robotic op, you're going to be in one of our top-notch facilities - one that can hold its head up against anywhere else in the World, so there's every likelihood that you'll be completely cured and not be bothered by RCC again.

Hiberniangirl
Posts: 19
Joined: Sep 2013

Has anyone in a similar position to mine, (3.6cm encapsulated tumour in left kidney), been given a bone scan before or after their operation?  I've been given a full chest CT scan but no mention of a bone scan

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

hi hib,  you sound just like me......i ended up with a full nephrectomy but i have just had my first follow up......they have given me a ct scan and the follow up to that is ultrasound and x-ray......no bone scan for me......

eims x

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

I tend to think there is no 100% standard, but with such a small tumor, and no other signs, I would not expect a bone scan.  In my case, the initial MRI I had showed a bunch of "concerns" for my surgeon.  So then I had multiple pre-op scans-bone scan / MRI to eliminate most of the concerns and confirm that I had Renal Vein Invasion.  Based on what little we know by now (you will know a lot more after the surgery - pathology report) you will most likely be good to go after the surgery.

Ron

Hiberniangirl
Posts: 19
Joined: Sep 2013

Hi Eims, 

 

When was your surgery? Hope your ct results and ultrasound ok. Are you on any drugs now? Sorry for all the questions, all been so sudden and am trying to gen up on everything before my op on 26th.. 

 

Hib x

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

hi hiberiangirl, ask away and hopefully it will help!!  i had my radical in january this year.  no drugs at all.....my urologist told me just to live life!!  no results for me yet so i guess i better start chasing them up...i know they have them they just haven't gotten them to me yet....the best advice i can give you is to get organised before the op with stuff you won't be able to do for a bit.....my doc said stretching was a no no and try to keep everything you need at your level...if that makes sense?  how are you feeling in yourself?

eims x

Hiberniangirl
Posts: 19
Joined: Sep 2013

Hi Eims,

 

mostly I'm fine, then other days it gets to me.. although the prognosis is very good in my case, its still all new to me.  I do a lot of travelling with my work so I'm hoping that I'll be able to fly again when I'm ready.  Most people say that the lack of energy is the main problem after such surgery, did you find that too?  Can't believe that you are on no drugs, but that's good.  Did you have morphine straight after the op?  And did you find much discomfort in your shoulder also, which a lot of people have reported too.  Think I will purchase a recliner for when I'm out of hospital.

 

Thanks again,

 

Hib x

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

yeah i know what you mean...i was the same and still am to be honest.  it is a lot to deal with...even the word Cancer was hard to say at first because it made it waaaaaaaay too real if that makes sense!!  yeah it is the energy thing and my doc insisted that i napped in the afternoon and it really helped.  i was on morphine but had a bad reaction to it so that was not pretty but it was just a sensitivity to it and they put me on other pain killers after that but it was just paracetemol or ponstan.  the shoulder thing is wind that gets trapped in your body cavity and that eases even if you get it.  i only had it after my caesareans!!!  if you do get it ask for peppermint cordial and trust me it will shift very quickly.  i found i couldn't sleep on that side so lots of pillows help too.  it is good to get up and about when you can.  i promise you that you will get through this and come out the other side a much stronger person and you do look at things differently.

eims x

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

I've had 2 lap surgeries with the shoulder pain issue.  First time was uncomfortable, second was unbearable.  I graded my pain at a 9/10 for 4 days.  It was awful, then just as suddenly went away.  I hope you get to avoid it, but should you feel pain in your shoulder, it'll probably peak on day 2.  Stay on top of the meds.  My surgeon was stingy with painkillers, and sent me home with regular Tylenol.  Luckily I had some good stuff left over, or life would have been quite miserable.

 

As to flying- I was told 3 months minimum before getting on a plane-due to risk of DVT and internal bleeding from air pressure.  My surgery for my kidney was scheduled for a week after I return from a trip to the tropics.  They originally booked me in for Sept 10th, but I asked to change the date as I'm away Sept 25-Oct 6th, and it's a very expensive, non refundanble, long planned vacation.

 

Anyway, best of luck to you.  Thinking of you.

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

This is the first time I have heard you should wait 3 months for flying. Silly me. I never asked. Six (6) weeks after surgery I flew to Seattle from Michigan to see family for the weekend and to hike down Squamie falls. That was 11 years ago so I guess it did no harm.

 

Icemantoo

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

I had no shoulder pain at all, only paracetemol from day three after surgery. You will be ok and it gets better with each week that passes.

Hope that helps.

Michelle x x x

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

I was told three weeks was ok to fly! I am flying next wednesday so thats about 7 weeks .. i will let you know if I survive :) x

Hiberniangirl
Posts: 19
Joined: Sep 2013

Thanks for all your helpful comments, its so good to hear from others in the same situation or who have been in the same situation.  Operation day is looming, now I just want to get on with it, had enough waiting.....x

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

Thats the ticket!

It IS time to get the bugger out and move forward! Stay positive, stay hydrated, and allow yourself to properly heal.

Good Luck!

Michael

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

i'm with michael on this one...eims x

Hiberniangirl
Posts: 19
Joined: Sep 2013

Thanks, have finished work now for the next few months, just have to wait til Thurs and get that bugger out, as you say !

hib x

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

on thursday! You certainly aren't alone in having to do this. During recovery, do things for yourself. Short vacation, day at the shore put your feet up. You'll do lots of reflection.

Djinnie's picture
Djinnie
Posts: 912
Joined: Apr 2013

Hi Hib, 

All the best for Thursday, it will soon be overwith now! We will all be thinking of you:) as soon as you are up to it come back and give us an update! 

 

Djinnie x

Hiberniangirl
Posts: 19
Joined: Sep 2013

Well I had the operation on thursday last week, came home after 3 nights. It went well, the surgeon is very pleased. I'll get the report when I see him in a few weeks but he said the tumour came out very easily, like a golf ball.  I'm thrilled its over as the waiting is definitely the worst part and am resting at home. Sleeping tons, eating small amounts and drinking lots. 

The wounds, five of them, are a bit irritating where the stitches are in contact with clothing and I've a very bloated stomach.  At least I'm able to get out of bed unaided now, and I'm shuffling around the house a fair bit. 

 

Hib 

Djinnie's picture
Djinnie
Posts: 912
Joined: Apr 2013

Good to hear from you Hib, I am so pleased to hear you are doing so well, and that everything went so smoothly! You sound like you are doing all the right things! It does take a long time for that swelling to go down, and you may be left with some residual swelling. I had some light gauze over my wounds to prevent them catching, are your sutures soluble?

 

Djinnie x

 

Hiberniangirl
Posts: 19
Joined: Sep 2013

Hi Djinnie, 

Sutures are soluble but I'm finding they catch on clothing which is quite uncomfortable. I'm hoping that when the swelling has all gone down my stomach won't be quite such an odd shape..

I'm now walking around a bit more, not quite as tired, slowly getting there. Also eating a bit more now.  My appointment with the consultant is on 22nd October so I'll know more about the tumour etc then. 

How are you doing now?

 

Hib x

Djinnie's picture
Djinnie
Posts: 912
Joined: Apr 2013

Hi Hib, That is great news, it is a slow process and it can try your patience because you so desperately want to get back to normal. Our bodies take their own sweet time though! You may find that you are left with a small pouch once that swelling has gone down. I am six months on and even with exercise I can't quite get rid of mine, it doesn't bother me though, I have got used to it.

I am doing pretty good thanks! I am not so sure that I will fully regain my stamina though. I loved going for long walks, I could walk for miles, I still struggle with that, I run out of steam. We went for a long walk recently with my family, I became very tired after about 2 hours so they parked me on a nearby bench and kept going. There was a moment when I thought they may make the most of the opportunity and not come back for me! Luckily! they remembered who was cooking the dinner that night!

All the best

 

Djinnie x

 

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

hi hib,  ah thats great news...delighted you are recovering and yep im with djinnie you are doing it the right way.  slow and steady wins the race.....

eims x

Hiberniangirl
Posts: 19
Joined: Sep 2013

Thanks Eims,

 

Getting there slowly, almost back to normal, or the new 'normal'...

 

How are you doing?

 

Hib x

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Yea... you have been through the hard part.. now heal up and get back to "normal"..!  :)

Ron

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