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Surgery Monday 8/22

TinaK
Posts: 2
Joined: Aug 2011

I have 1 word....Scared! I am only 45 and the Dr. found a 4cm tumor on my left kidney right next to the uretha. Not sure if he will be preforming partial or complete. I read your posts about what to expect: pain, recovery, etc. My worry is "did it spread", will I need chemo and if I am only left with 1 kidney what drastic preventions do I have to take to make sure that it stays alive and well? Of course, I have a thousand things running through my mind, but I guess these were my main concerns. Any help or advice would be greatly appreaticated. Thank you, Tina p.s. Please prayer for me!

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Dear Tina,

At 4cm the odds are it that did not spread and will not spread. My surgery was on 8.1.02 and the little rascal turned out to be 4.2 cm and I have not had any further treatment since. While chemo and Cancer may have seemed like they go together in your pre RCC language skills, that is not the case with Stage 1 Kidney Cancer which sounds like what you have. Plenty of people live full lives with one Kidney. Some are born that way. Some donate a Kidney and others like us lose a kidney to RCC. In my day they were not doing partials. A partial would not even be considered if there was evidence or a probability that the Cancer spread. Cancer is a scary word, as is surgery, but once both are behind you (after the surgery) you should have no problem living a full and complete life. At 45 you are almost half way on your journey thru life. Our prayers are with you.

Best wishes,

Icemantoo.

ams123
Posts: 71
Joined: Aug 2011

I'm a little older than you (51) but my 3cm tumor was discovered last month. I have surgery on Sept 9, it will be DaVinci robotic laparoscopic surgery. What type of surgery are you having?

You won't need chemo - they don't use chemo for kidney cancer, and judging by the size of your tumor it is in an early stage. Once they take it out, you will be cancer free!

The most important thing for you right now is to find a urology surgeon with a LOT of experience in removing kidney tumors. My surgeon has done this 80 times (just on kidneys, a lot more on prostates), and I feel that is pretty good.

Why did your surgeon say he wasn't sure if he would do a partial - is he doing any further mri's or scans to get a better idea of the location of the tumor?

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

Hi Tina,

What you are experiencing now with all the questions and fear is normal, this board has been an invaluable resource for so many of us in your current situation. Visit often, sharing with those that have been through it makes a big difference. I'm nearly 2 yrs post op., full left kidney removed, and though we've never actually met, the iceman is high on my list of favorite people, there are many others here like him.

Because your tumor is relatively small you can expect to live a long happy life after surgery with only minor dietary adjustments (reduced sodium & protein). Keep a positive mental attitude and try to look forward never back, you'll be your old self again before you know it. Good luck and God speed.

Keep us posted,

Gary

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

When I found out at age 44 (August 2007) all I could think about was my only child (six at the time). I know how you feel but it sounds like to me it's too small to even have positive margins. They even did it laporscopy and didn't have much pain. Didn't even remove any lymph nodes or have ay kind of treatment. All I have to do now is have a ct scan every six months. Did they find it accidentally? God is watching over you. Keep us posted and I will be praying for you.
FM

Joey O
Posts: 5
Joined: Aug 2011

i woke up one morning and peed blood, went to the doctor to be told they found a large mass on my left kidney , almost two weeks later i had a complete removal and ten days after that was told that it was non invasive and contained to the inside of my kidney and needed no chemo, will go back every 3 and 6 months for bladder scopes and ct scans with all the luck and good news i got , "was it good news actually " being non invasive why am i so damn scared , people tell me i am lucky can some one reasure me a bit.

ams123
Posts: 71
Joined: Aug 2011

I would say it is perfectly normal to be scared, first of all this all happened so quickly, you probably felt fine before it all started, then you are told you have cancer. That is scary! Despite being reassured by the doctors that it was non invasive, of course there is still that fear. I think the only things that can help are being as informed as possible, and time. I have been reading a lot, this forum, as well as the kidney-onc mailing list (that one is actually a little scary itself), and hearing of so many people who have had the same thing and are doing fine years later is reassuring. As time goes on, I think the fear will subside, but of course we will always have anxiety during CT scans.

I am new to this whole thing also, my surgery is in two weeks. I find it is also helpful and comforting to "talk" to people who have been through it, here on this forum.

Joey O
Posts: 5
Joined: Aug 2011

Thanks for the words and I think I need time as you say. I am so new to it and it happened so fast I feel I didnt even swollow the whole concept and my kidny was gone, pretty crazy.
My problem is every ache and pain in my head is cancer ,I am driving my self a little crazy and this sight is actually helping , my wife wants me to go talk to someone but I know what they are going to say, well at least I think I know .."keep positive" no kidding dont we all.

ams123
Posts: 71
Joined: Aug 2011

I see a therapist (I was seeing him before all of this cancer stuff) and he doesn't tell me to stay positive. He lets me say whatever I want to say, and he doesn't judge or tell me what to do or what to feel. I feel like I must stay positive around my friends and family, and therapy is a good place to let out my real feelings without the fear of criticism. Staying positive is good, but isn't possible 100% of the time. It's worth a try, but sometimes hard to find a therapist that you really click with. A cancer support group could be helpful too, even though kidney cancer is so different from the cancers that most people get.

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Hi Joey:

I am still waiting to have my surgery. It is not unti September 13th so I still have a few weeks to go. What I have been going through is stomach related. For the past couple of months I m having issues with some of the food I choose to eat. Stuff that never bothered me before is now causing all kinds of havoc in my body. The stomach pains that sent me to the doctor in the first place when they accidentally discovered my kidney tumor are still there causing me grief. Acid reflux can really drive you crazy as it can mimic lots of other things like heart attack, chest pains, stomach cramps, gas and the list goes on. I'm on pain meds for the pain but that causes other issues itself so the whole situation has been really bad for me anxiety wise. I don't know if any of it is related to my kidney but I know I want it gone as soon as possible. Its probably a bunch of other stuff thats not related to the cancer and I'm just losing my marbles I don't know that either. I try to remain as positive as I can and will deal with all the other issues after this surgery is over , I know some of it must be just the stress so I have started taking anxiety meds just for now. They do seem to help quite a bit I try not to discuss that other aches and pains with anyone in my family right now as they already worry to much.
Hopefully your situation will get better as your body heals.... You are in my prayers now for a speedy complete recovery.... Your in the best place to talk so if you need to vent please feel free.................

My best
Kat

rae_rae's picture
rae_rae
Posts: 264
Joined: Oct 2010

Kat
I had really bad stomach issues as well- heartburn and reflux nonstop, nausea all the time and some vomiting among other symptoms.
after my kidney was removed my symptoms improved dramatically. Not saying this is your case but you never know.

It'd good to be aware of what is going on with your body and I tell myself if it comes back I will handle it one day at a time, hoping for the best and preparing for the worst.

Rae

Joey O
Posts: 5
Joined: Aug 2011

Thank you all for all the talk it really does help.I just wish I could have someone tell me I have no worries..but I know there is never 100% anymore.. with all the reading I do here and see that everyone is living many years after kidny issues I know I will to.I just need to be strong now and move on,I go back in on october 20th and I think.. though I will be very nervous it will help to find I am clean after the first 3 months. i really need some good news. Does any one know what the full lenght to heal is after a full removal? I want to start exerising again but not sure if i should yet. i had no restrictions except for lifting for 4 to 6 weeks.

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hello Joey O

It took me almost a year before I felt that I completely recovered. That being said, if I lay on my left side (removed the kidney and tumor) for too long, it takes me a bit to work the soreness out. IMO, I would take exercise very slowly. The most important thing is that you heal properly. As far as worrying goes, I'm in the same boat. Some days are good, some not as much. My cancer was found on accident, was experiencing gallbladder issues. My Father passed away from kidney cancer, so needless to say I was scared beyond belief. Although the tumor was large, size of my fist, they said it was contained and were able to get clean margins around it. It's been 1.5 years now. I have every 3 month follow up appts, labs/chest xray, CT or MRI scans. At my last appt they found a small, 6mm lesion on my remaining kidney. Because of the size, the doctor wants to ultrasound again the first week of November. Initially I wasn't okay with waiting, but have learned to deal with it. I have HUGE anxiety issues about a week leading up to my appointments.

Worrying comes along with a cancer diagnosis. I don't think I will ever be worry free again. People can tell you to not worry, or it's probably nothing......neither of those things give me comfort. What I try to do is forget that I had cancer. That isn't easy, but some days it works. Sometimes I am happy, and other days I feel sad.

Take Care
Valerie

Joey O
Posts: 5
Joined: Aug 2011

Hey Valerie its blows dont it i guess all we can do is let time tell the story for us be strong with me and it will be for the better. so everyone tells me i am sure you and i will be ok in the long run . to many people live on as i am being told so i am hanging my hat on that hook . its hard but each day i dont go crazy it is getting better..lol thanks for your words

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Joey
Yes, it blows. :) Have a good day!
Valerie

Joey O
Posts: 5
Joined: Aug 2011

yeah its blows all right, but i really feel its time to take charge of it. every day is getting better being back at work and all.This chat stuff helps as well, at least no one see's me crying...lol. not all the time any way, i am thankful to say. i went to the hospital the other day for what i felt was some breathing problems ,i think they thought i was nuts , they found nothing at all and all my test came back clean, i felt like a champ for a while i tell ya, maybe its because i quit smoking for 50 days now after 20 plus years...at least a got something out of all this mess except for anxiety. smoking blows too dont do it. hey Val nice picture and good luck with every thing.

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Joey
Happy to hear that you've quit smoking,I know it's a habit that's hard to break (at least that is what I've been told). I've always had anxiety issues, have to tell the voice in my head to knock it off!!!! :)
Valerie

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Hi, been thinking about you since yesterday and hope all went well. Many prayers and hugs to you and your family

My Best
Kat:)

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

Tina:

Of course you are freaked out. That is totally normal. What is important is to listen carefully to the folks on this board and take one thing at a time. You are going to be in good hands through surgery. Just make sure to have your caregiver writes things down. There is a lot that you will be exposed to but for the most part, your doctors will take good care of you. You really don't have to have your wits about you until after you have recovered from surgery and that should be your only focus right now. THEN, stop back by and start reading and asking questions.

Do not worry about things that haven't happened yet. Chances are very high that it did not spread so focus on relaxation and healing. Your body will respond much better if you can bring your focus back to relaxation and healing instead of focusing on imponderables.

May God bless you through your surgery and be with you every step of the way.

John Neary

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

TinaK _

I hope by now you are home from the hospital and on your way to recovery. Please give us an update when you can.

DarrylPe's picture
DarrylPe
Posts: 75
Joined: Mar 2011

Hi Tina
Wishing you a speedy. Easy does. Listen to your body and give it time to heal.Keep us posted .

Darryl

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