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ironman57
Posts: 3
Joined: Mar 2018

Hello everyone, looks like you might be having a new member. I wish I could say I was happy about it but after glancing thru some discussions, it looks to me like a wonderful group of people.  Hopeing for some advice as I was just diagnosed late last week with a 3.3 c.m. tumor in my right kidney. So far have been sticking my head in the sand hoping to wake up to find out it was just a bad dream. Unfortunatly it wasnt.  Here is what I know.. the tumor is located in a bad spot for just trying to take it out. The surgeon says he will try his best but there is a good chance he will have to take the kidney. He did not mention anything about taking only part of the kidney. He also wants to operate soon.  My questions so far are. .how much time do I have to make a decision? Am I in a massive rush or is there time for me to consider things? He says its a 90% chance it is cancer, if it is not can I just leave it alone and make some lifestyle changes and mabey it will shrink? should I have urine tested for blood? Is surgury my only option? Whats it like living with one kidney?  Anyway, sorry for the probably dumb questions but I am sure I will have more. Thanks in advance for any and all help, it is greatly appreciated.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

This is a great place for answers your gonna have. There are no dumb questions first off. I found this place a year ago after incidental find. Dr's knew after scan I had cancer and the kidney had to go. It took a month from diagnosis to surgery. There were tests to be done, and scheduling at hospital. I would recommend going over some recent posts as there are a lot of recent surgeries. Read our questions,fears and anxieties, and if you have to have surgery your not alone.sending calming and positive thoughts.

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

ironman,

 

 

If you are going to have kidney cancer you are lucky taht it was caught so early. That was me hearing those words in May 2002. It is unlikely to spread under 4cm. It will grow however and complicate your prognosis if you do not get it out inthe next couple of weeks or months.  At 3.3 cm it is however too big to watch and wait. In my day they yanked the whole kidney out anyway. It sounds like surgery is your only option from what you have posted. I know it sounds scary. I had mine done as a 59 year old and I will be 75 years young this summer. Been there, done that and it beats the alternative.

 

 

icemantoo

NYNY83
Posts: 8
Joined: Mar 2018

Four years ago they found my 2 cm mass.  It was located on (in?) the ureter, making it difficult to remove.  My urologist said it was beyond his paygrade.  I ended up flying out to USC for robotic surgery, where they were able to do a partial and save the kidney.  Since I have some other health issues, the surgeon wanted to retain the kidney if at all possible.  I suspect most surgeons would have just done a total. I'm on the East Coast, so it involved a few plane rides for the consult and surgery.  Was operated on a Monday, went from the hospital to a hotel on Friday, flew home on Monday, and went back to work on Wed (which was incredibly stupid).  But after my experience, I'm a believer in not letting logistics prevent anyone from getting the best care.

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

Sorry that you have to deal with cancer, but you're fortunate in that it was discovered early on.  You don't want to wait too long -- it won't go away and will likely spread or increase in size.  Get it out while it still looks pretty well contained -- that is very important to your future prognosis.  For me, it was important for my mental well-being to get rid of the cancer.  My right kidney came out and you will do fine without it.  You will be monitored from time to time to be sure that problems don't arise with your remaining kidney -- at least until it is relatively certain that you're stable.  Second opinions are always a good option in situations like yours.  Find the best kidney cancer people that you can find and seek out their opinion as to whether the whole kidney has to go.  

 

Overall, your prospects should be pretty good.  Just don't wait too long.  

 

Best wishes for your success.

 

Dutch

jazzgirl's picture
jazzgirl
Posts: 139
Joined: Nov 2017

The only one of your questions I can answer with confidence is:  "What's it like living with one kidney?"  I was well into my thirties before anyone realized I only had one kidney.  No ill effects - everything worked fine.  Then a year and a half ago I had a partial nephrectomy to remove a tumor on my right kidney, so I am now chugging along on probably 3/4 of one kidney.  I'm careful about sodium, protein, and potassium and watch my blood pressure.  The surgery delayed our trip to Spain to walk the Camino de Santiago (~500 miles/~805 km), but I am walking, swimming, and hiking and have every expectation of re-visiting that trek.  You'll be fine.  Take care -

Deanie0916
Posts: 259
Joined: Nov 2016

I agree with the other responses here, get it out as soon as you can, if you are in doubt or don't feel good with the doctor you have, get a second opinion. I had my left kidney removed about 1 1/2 years ago, I am doing well. You are so blessed that they found it when it is smaller. Hang in there, we will be here to answer questions as much as we can. Surgery might not be the only option but I think it is the best option for Kidney cancer. I think the only way they can make sure it is cancer is to biopsy or remove the tumor. positive thoughts and prayers coming your way...

steelr66's picture
steelr66
Posts: 23
Joined: Mar 2018

I am also relatively new here, awaiting surgery on April 3rd, but this place is filled with sensible guys and gals who have been through what we are going through. They will give you there honest answers and experiences. I hope everything pans out for you and will keep you in my thoughts as you under take your journey.

ironman57
Posts: 3
Joined: Mar 2018

steelr66  I was wondering how you are doing and how your surgery went.  Hope all is well

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

Sorry you have to be here,  but it's a very good place to be in our situations.  Lots of caring folks that are glad to help you out and make you feel more at ease.

Your sitation sounds somewhat like mine.  I had a radical neprectomy five weeks ago today.  My tumor was 3.3 x 3.4 cm according to pathology.  I was diagnosed in December and had surgery in February.  Honestly, as I look back, if I did it all over again I'd have the surgery sooner.  I think most folks here would agree the waiting and the anxiety are the hardest parts. Surgery won't be as bad as you'll have it in your head.  It's no walk in the park - but not as bad as I bet you're thinking right now. We are in a very lucky group that were diagnosed early and can get it out before it grows and/or spreads.

As far as life with one kidney - so far it's just like llife with two.  I do watch my sodium now (just to make sure my blood pressure doesn't go crazy).  I"m not on a low sodium diet - but am just more aware of how much sodium is in foods and I try to make smarter choices.  As far as how my body feels with one kidney - just like it felt with two.  According to my latest bloodwork my kidney function has increaased since the surgery and all seems to be going along good.

Try not to worry too much.  You're in a very, very good position for a great recovery.  Hang in there and if you have any questions or concerns don't hesitate to post.  The folks here helped me more than I can say.

Best Wishes,

Jim

 

Mighty Frog's picture
Mighty Frog
Posts: 140
Joined: Jul 2017

Had mine partial nephrectomy July 2017. My first doctor said he don't have the skill to perform LPN surgical. So he recommended me to a Urologist which had the skills and experince in LPN surgical. Nowadays they will try to save as much as possible the kidneys. 

ironman57
Posts: 3
Joined: Mar 2018

Wow! thank you all for the quick response, and wonderful advice and knowledge. So glad I found this support group. The gist of what I get from all your support letters boils down to 3 words  (get it out)  I just left the surgeons secretary a message and will follow up again tommorow. I know he had a opening in late april, and some in may. Thanks again so much 

Max57's picture
Max57
Posts: 160
Joined: Mar 2015

Now rather than tommrow....it take me and my surgeon 2 weeks to make up our mind to go ahead and get it out ....good luck 

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

I love the name!  Just out of curiousity--have you completed one?  

You've gotten a lot of good advice about your next steps.  Whether you do seek a second opinion or not, the mass does need to come out.  I'm hopeful you will only lose part of your kidney, but don't worry if they have to take the whole organ.  With that being said, I'd encourage you to get it out sooner rather than later.  Once they remove it pathology will determine if it is cancer or not.  That 90% figure that your doctor shared was also the same figure my doctor gave me.

Good luck and keep us updated,

Stub

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

I totally agree with the advice you are getting from the rest of our group.  No real hurry, but get it out without undue delay - no need to procrastinate. My urologist did not bother about doing a biopsy, which in any event is not easy for kidneys. Once they've got it out they can do an acurate  diagnosis in the lab. Expect to take about 6 weeks to get over the op, depending on your state of health and fitness.  If your stage-name is anything to go by........!

Life with one kidney is not a problem.  I really have not had to make any significant changes to my lifestyle.

The one thing you will need to have a discussion about with your urologist/oncologist is subsequent treatment or monitoring.  The risk of metastasis at your early stage would seem low and it has been the norm to not go for post-op chemo with kidney cancer, as it does not respond to traditional chemo all that much.  So regular scans has been the most common follow-up regime.

Now that immunotherapy is starting to look as a real possibility for getting on top of RCC, I believe trials are starting up, giving this a go as adjuvant treatment.  Might be worth keeping your eyes and ears open about any upcoming clinical trials.

Best of luck for whatever happens.

Rockspin
Posts: 77
Joined: Aug 2017

I too had a 3.5 tumor and because of where it was located I had my total kidney removed. It’s best to get it out as soon as possible. I too wondered if I should wait and was in shock as I think we all were. No one wants to hear the word cance. However you should be fine with just the surgery and recuperation. Good luck to you and let us know how you’re doing.

AnnissaP's picture
AnnissaP
Posts: 631
Joined: Sep 2017

Hi and welcome!! Even though none of us want to be here. My surgery was a booked partial, but I ended up losing the whole kidney. It is a cancer that typically grows slowly so it is not like you will need surgery tonight. Just having that appointment set is relief in and of itself though. Even if it is not cancer, the tumor still needs to be removed. You will be ok. All the unanswered questions are tough so feel free to ask away. You are amongst friends now!!

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