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Possible surgery - Very scared, worried, questions about others experience

LKidd
Posts: 37
Joined: Feb 2013

Hi all - So glad I found this site. Doing lots of research on my situation. First I would like to say good luck to all out there. Apparently I am not alone, someone out there has had to have been through some of the things I am going through now.

On 1/1/13 I went to the ER with a sudden onset acute intenstinal illness. That ended up being diagnosed as an intestinal infection. Given antibiotics and it went away in a few days. The total surprise came when they did a CT scan, my first ever - told I had an intestinal infection and they found a mass on my kidney. I was on morphine at the time and thought I was dreaming what the doctor said. I confirmed with my husband. Since then my doctor sent my CT to his radiologist who confirmed the mass. Sent to a Urologist. The Urologist has never ever seen a tumor like that before. Whoa, that's not good. It's 3cm. It's flat, not round at all, flat. It's on the outside of the kidney across it, they can't even tell if it's attached to the kidney or just outside of it. The Urologist consulted with his colleagues and called me 3 days later. None of them have seen a tumor like that. Whoa. The recommendation is an open exploratory kidney surgery. Isolate the kidney, send a piece of the tumor to pathology to identify, determine if it's attached to my kidney, at one point or attached all the way across. If it's benign and attached at one point, take the tumor and 1/2 the kidney. If it's malignant or attached across the kidney at all points take the whole kidney.

So this is all way scary to me. I have never had surgery, never even a CT before. I have not had anything major done before. I don't like medical procedures, don't like invasive procedures and avoid them whenever I can. To be blunt, I am kind of freaked out right now. I go for a 2nd opinion from a different Urologist this Friday 2/15. It has been a month and a 1/2 since discovery. I am worried it's all taking too long. So far it's just been passing info and a month and a half has gone by. That's worrisome as I have this thing growing inside me and no one knows what it is!

I have some questions to aleviate my freaking out. If you have gotten this far in my novel, you might be willing to help me out and tell me some of your experiences.

- How do you feel when you first wake up from surgery? Is there a lot of pain?

- What does a catheter feel like? Do they put one in while you are awake before the surgery? Can you feel it after the surgery? Does it hurt?

- I read that an epidural before surgery makes it pain free after, anyone ever had that?

- Everyone says walking as soon as possible and a lot is great for recovery - is there any danger in it? Moving stuff around in your body, danger to the incision etc.?

- Does coughing, vomiting, sitting up and general movement pose a danger at all after surgery? Or is it fine.

- How quick is the healing? Do you progressively get better in the hospital?

- Is it hard to go to the bathroom after the surgery? Are you able to urinate right away?

- Do they control pain well in the hospital?

- Does it hurt when they check, clean your incision or change your bandages?

- How long before you get to eat? Can you eat? I eat many meals a day, I can't imagine not eating for more than a few hours. How long do you go without eating? Is it a problem?

- What troubles in recovery or taking care of yourself are there after getting home?

- What does it feel like with your kidney gone? Can you tell?

I am really sorry all this is so long and I have so many questions. Hopefully someone out there will take the time to answer some of them, if you made it this far. I am so curious and this is all scary, unfamiliar and I am really not wanting to go through all of this. Any help would be greatly appreciated. Thank you in advance. Now that I have all that out, hopefully I can join the "short" bloggers! - Shorty

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

You probably haven't had time to explore the threads here yet.  It may help if you do.  You could just look down the list of titles of the threads and look at some that sound like they're started by people worrying in advance of surgery, which any normal person does - worry, that is.   You've already made one very good move in seeking a second opinion, especially with your unusual condition.

It sounds as if you will need surgery to find out what you're dealing with.  It's pretty cool to have a tumor (?) of a kind that people don't recognise and it may turn out to be no big deal.  However, major abdominal surgery is a big deal and so your questions are entirely natural and reasonable.  (By the way, you haven't said how old you are or why you were on morphine.)

First off, I should say that the majority of patients here would probably gladly swap places with you - many are in far worse situations.  You are likely to be fine, even if you do turn out to have kidney cancer.

The first thing to say is that many of your understandable fears are unfounded, but, assuming you have open surgery, the first couple of days after it are sore.  After a couple of days it gets rapidly better and you will soon be back in shape to carefully resume your normal life, though it may be months before you're completely recovered.

Some people have epidurals but in any case you'll be right out of it during the op and not feel a thing.  Afterwards, you'll have plenty of meds for pain relief and probably a morphine pump.  You'll likely have a catheter which will have been put in while you're out cold and you'll hardly be aware you have one.

Walking as soon as you're up to it is ideal and will do only good - you should refrain from doing somersaults or squat jumps, but you're not likely to feel any urge to!!   Moving around generally is very good and won't do any harm.  Coughing is good in getting your airways clear but can be sore, so holding a pillow over the incision when you cough is good to make it less sore to cough.

Healing from major surgery always takes a while but you will get progressively better in hospital and then keep getting better at home.  You don't need to worry at all about urinating - that will all be taken care of by catheter until you don't need it and there's no pain to worry about.  The hospital will give you excellent pain relief and you should take all you need and not try to be heroic - staying ahead of the pain is better than playing catch up and will speed up the healing.  Checking on you will be painless.

Eating little and often is generally good for everyone at all times.  You won't feel like eating a lot to start with and the hospital will see you're ok on that front so it shouldn't be a problem.

Once you're through the op, come back for advice here on the recovery phase.  There is our biggest thread "Recovering from radical nephrectomy"  which you could start reading to get some tips in advance.  It sounds as if you will have some help at home.  You may find that for a little while it's easier to sleep in a recliner, or a chair than in bed.  If you can arrange not to have to climb stairs much to start with it may be more comfortable.

You won't be able to tell that you are missing a kidney, but a lot of us get odd aches and pains in the operated area, on and off for a long time afterwards, but nothing to get scared about.

I hope this gives you some comfort and some ideas for starters but do keep coming here and you'll get lots of information and support.

 

icemantoo's picture
icemantoo
Posts: 1557
Joined: Jan 2010

You wouldn't be normal if the words Cancer and surgery are not each scary words. Put them to gether and you have the very unique requirements to join our club to which only 3 % of cancers belong.

First even with a 3cm tumor that doesn't fit in the mold, it was caught early and complications from such small tumors are rare. Another words you should have a full and complete recovery.

Second, surgery normally cures cancer where small tumors are invoved. You should be able to say you had cancer not that you have it after the surgery.

Third there is no way I can sugar coat the surgery. It is not fun and games, but it does beat the alternative.

Fouth, if this 59 year old male crybaby can get thru the surgery, anybody can. I was in a full sweat when Arnold S was pregnant in the movie Junior.

Fifth lets talk about the surgery and recovery. The younger you are the easier it is go**** to be, You wake up 6 hours later and when the pain killer is not on full blast it hurts. You can not move your body without feeling pain. You are not really hungry for a few days.The ride home is not fun. You will park yourself on a couch for a week or so only getting up when you have to. Nobody told me you should take stool softeners, For me the worst pian was being constipated one week following surgery. Not fun.

Sixth, as time passes you will appreciate this little iniyiation and there are many stories out there where the Kidney Cancer was not caught early and what you have gone thru turns out to be nothing in comparrison.

Seventh, When you can sit back and laugh at what you went thru, you can help me with the Newbies.

 

Icemantoo

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

iceman, after your unhappy bout of sickness on your anniversary cruise it's good to see you've recovered so well that you've shed 10 years!!  The fact that you now feel 59 is great - you'll have to tell the rest of us how to do it!

icemantoo's picture
icemantoo
Posts: 1557
Joined: Jan 2010

Sorry for the error. I was a young 59 year old kid when I had the surgery and am going to be 70 this summer. As  far as Cruises my bout was nothing compared to what's going on aboar Carnival in the Gukf on Mexico this past week. This should knock 1 or 2% off the price of cruises for the next year.

 

Icemantoo

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

Does the thought of kidney cancer and surgery occupy your mind? Maybe just a little? Don't waste energy and time on the issues before you that you can not control. Let the professionals take care of you and do what they say. Concentrate on doing what you will be told and do it well. Put your effort into your recovery as you will be instructed. I think the majority of worries that "new" people have could drive them crazy. I will bet that is not your goal. Take a step back. Relax. Premature worrying will only complicate things. You will do fine. Keep it simple. Good luck.

LKidd
Posts: 37
Joined: Feb 2013

Wow, I totallly agree with you. Interesting that you had to tell me exactly what I say to others all the time. Don't waste time worrying, it doesn't change the situation is what I always say. I say that to everyone when it comes to worry and stress. Seems in the face of such a possible diagnosis I can't take my own advice - :). I will focus on it when I get there, deal with it in a positive way as best I can, and get past this. Thanks for your support and kind words.

LKidd
Posts: 37
Joined: Feb 2013

Hopefully you are right. I am getting more and more educated on the tumor, I am realizing 3 cm is small, and my chances at a full recovery are possible. This is the brighter side that I hope is the case. Love the thought of saying "I had cancer", we shall see what I will be saying I had after I find out what the little creature is! Yes, the surgery. That is the part I am most worried about in reality. Just not good with medical stuff, procedures etc. I don't like it. So something putting me down like that or having to deal with all that goes along with it is just something I don't want to deal with, but I will have to, I will need to, and it is what it is I guess. I will take your advice on the constipation - no thanks. I hope you are right about catching it early, very grateful for my illness that night. That was my 2nd trip to the ER, so it's rare that happens. I feel thankful it all happened. Yes, I will help with the newbies and be there to answer their questions when that comes along. Thanks so much for your insight.

LKidd
Posts: 37
Joined: Feb 2013

Thank you Texas Wedge. I appreciate you reading my novel and taking the time to give me so much information. Yes, I agree, I did catch it early incidentally so I do feel luck and I realize a lot of people here have different situations. For that I am grateful. I just have never dealt with much medical stuff, don't like it much and the unknown - whatever it is I have - and what I will be going through to find out is hard to swallow. Your detail and answers, insight and reassurance helps a lot. I will likely refer to some of what you posted again to help move forward. I think if they could positively know what it is and we know exactly what to do, that would make me feel less concerned. I will roll with it and hopefully it all turns out as all the supportive people on here say.

I was on morphine at the ER for the intestinal illness, and was out of it on that when they told me about the tumor. I am 45.

Thank you again for your thoughts! :)

GSRon's picture
GSRon
Posts: 1259
Joined: Jan 2013

Yes I was very scared... but I got to say, I way over reacted..!  I had what I believe to be a very bad case, 12 plus cm tumor with the Cancer invaded the Renal Vein...  I could say I did not ask enough questions before the surgery but in reality, ignorance was bliss..!    And in my case, they did an "intervention" the day before the surgery, which was a bonus of sorts... I was already "tubed" when it was time... and while I was watching the nurse shave my abdomen, another slipped the knock out drug in to the IV...  I never saw it... one minute I was talking to the one nurse... and then lights out... 

Woke up in some pain... but quickly got a shot... and other than that.. not anywhere near as bad as I had thought...  And unlike what you read above here...  I had no issues with my bodily functions... whew..!  But yes, they did put me on a stool softener immediately.. which I am sure helped...  Heck, on day 2, I stood up and they brought me a commode to use.. the 3rd day I walked to the bathroom...

Now I do NOT wish any of this on my worst enemy, but the surgery was really a piece of cake...   Just be sure you discuss the pain management both before and after the surgery...

Good Luck..!

Ron - it was very sunny in California today..

LKidd
Posts: 37
Joined: Feb 2013

Thanks GS Ron. Yes, I would definitely discuss pain management. This site and people like you are making it seem so possible and not as scary as I am thinking. I just know there are so many possibilities right now, both good and bad. So we shall see. Btw, I really like my kidney, hope it's nothing.

fluffylove's picture
fluffylove
Posts: 19
Joined: Feb 2013

i found this site prior to going to what I thought was a cat meow scan, which was disquised as a consultant, bit shocked. I have a 4cm tumour inside my kidney to be removed in six weeks last wednesday. Looking forward to four months off work, ditto so many questions and thanks for your input have more now.

I live in the UK in Exeter devon and am so glad I have found this site, although its all scary I feel confident that the sugueon is confident.

 

LKidd
Posts: 37
Joined: Feb 2013

Good luck with your surgery. I am glad this site helps and you can find answers to your questions also. I am definitely finding them and it is also helping with the support, being able to discuss the situation and see how other people are doing with a similar situation. Really glad I stumbled on it. I hope you do well. You will have to update us on how it goes. 6 weeks seems far away. You have time to prepare at least.

angec's picture
angec
Posts: 622
Joined: Mar 2012

Lkidd hello, I saw all of the great advice you have received from the other great warriors on the boards here. Don't they make you feel good? And you should see what some of them have been through, but they are troopers!  I just wanted to see what the second opinion resulted in on Friday. Also wanted to ask if you have gone to a cancer hospital that specializes in tumors of all kinds?  It can wind up to be nothing. Tumors are usually three dimensional and a flat mass does not have to be cancer at all.  I don't think they will know what it is until they go inside like the others have said. But in the meantime take a deep breath and try (not easy) not to worry.  Even if it is cancer it is small enough to have a full recovery and no further issues.  Please let us know how you do and know you are in our prayers.

rae_rae's picture
rae_rae
Posts: 267
Joined: Oct 2010

I can answer a couple of your questions. First, please forgive any typos as I am riding in a car on my phone. I had an epidural and while it relieved a lot of my pain, it didn't get it all, mainly due to my incision being so close to my diaphragm - they wanted to be sure i could breathe! No side effects l
ike with drugs.
I also vomited upon waking from surgery (she no harm done) and caught the Norovirus they day they took my staples out. Hurt but nothing injured. You will be fine...one day at a time.

LKidd
Posts: 37
Joined: Feb 2013

Interesting. Thanks for the info. The epidural sounds like it would help and possibly better to have it than not. Vomiting, that's what I picture myself doing. My stomach is sensitive and I have never been on general anesthesia. Not sure how I will react. Hopefully they have had that happen before and know what to do to make sure you are attended to even if sick. Norovirus is bad news, sorry to hear that. That would be awful. Thanks for the post, you are right. One day at a time.

LKidd
Posts: 37
Joined: Feb 2013

Hi Angec - Thanks for the post. 1st to answer your question which I will also post to all, the friday opinion was so polar opposite and completely different. His opinion was biopsy 1st, watch it 2nd, surgery distant 3rd. Discussed the other opinions say that the biopsy could cause cancer to spread if it's cancerous. He said that chance is so low, especially considering the location of my mass being on the outside of my kidney and right up against my ribs/back. It's easy access apparently. He feels even if cancerous, very low risk of spreading. I have not gone to a caner specialty hospital. An interesting thought. This guy was one of 4 Utah doctors on the US news top doctor list, high performing in Urology and 9 other specialties. Plus kidney tumors and problems is all he does. I liked him a lot, very confident. He thinks it's benign. He also has not seen one like this at all, and can't tell if it's attached to the kidney like the other guy. But he did go over all the cancers it is not for sure, why he thinks it's benign, and all the benign tumors he's taken out that are similar. So I am grappling between biopsy or 3rd opinion - maybe a specialty cancer hospital would be good. Thanks for that thought. I appreciate your post, and being in your thoughts for a good outcome. I am so consumed with this whole thing wondering what it is and what to do that this site is so helpful. Thanks again.

GSRon's picture
GSRon
Posts: 1259
Joined: Jan 2013

OK, not sure where you live... but I suggest you read up on the controversy of to Biopsy or not...  make up your own mind on which way to go...

 

FYI, I said NO to the epidural, and opted for a push button pain killer, backed up with a shot when needed the first couple of days...  my stomach was fine... actually I was eating pretty soon after surgery... not sure but I think I had soup like the 3rd day after... something like that...  as I stated, I was amazed how easy it all was, once I woke up..!

Good Luck

Ron

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