Newly diagnosed with a difficult decision to make

[Teekay2]

Hello,

Newly diagnosed with a difficult decision to make.

Lesion on left kidney stable for four years has “dramatically started to grow”and is in a difficult position next to lung and blood vessels according to consultant so they cannot do a biopsy. I have been given a decision to make “according to my taste for risk”.

1. A partial nephrectomy-the most risky.

2.Remove the whole kidney a simpler operation but then I would only have one.

3.Continue to monitor untill it reaches a stage where the kidney must be removed,it is close to that size now. But if I wait my health and my age may be against me by then.

I am immunosupressed due to taking Tocilizumab for Rheumatoid Arthritis and Temporal Arteritis.

I would appreciate any feed back before I make the decision.

[jodaer]

I can't give you any feedback as I've not been in your position but will send you some positive energy to help you make the right decision for you.

[Bingo88]

Good morning Teekay2. I think you need to speak and get advice from your doctor on the best option. As to what he thinks. It is possible to live with 1 kidney but that all depends on your general health and age. If your getting older the 1 kidney has less time to manage. It's a difficult decision to make and advise. Brian

[OldTownhammock]

I am in a somewhat similar situation. I chose to have my kidney removed. I had a mass which turned out to be benign. Now I have kidney disease efgr 41 up from 34 my previous test. To me the answer was obvious because they thought it was cancer. I try not to think of it too much and watch my diet. My doctor in FL says I don't need a nephrologist (?) And he doesn't know of any renal dietitians. I am moving back to NC and hope my gp will refer me to a nephrologist. Good luck with your choice

[Teekay2 in reply to OldTownhammock]

Thanks and Best Wishes

[PeaB4YouGo in reply to OldTownhammock]

It's a comment on the state of health care in the US. You have obvious kidney issues that should be monitored, yet your GP won't refer you? I say, make your own appointment and hash it out with your insurance (PLS tell me you have insurance!!).

[OldTownhammock in reply to PeaB4YouGo]

I do have insurance, pretty decent insurance. know it's a comment on the state of health insurance in the state of Florida. I have to be stage 4 to have a nephrologist. My PG says that he doesn't know of any renal dieticians. We are moving back to North Carolina and I believe my doctor up here will be able to help me.

[KidneyCoach NKF Ambassador]

I had PKD and complications of stones, infections, high blood pressure, pain, cysts ruptures among others. After nearly 30 years was told I couldn't be listed until both were removed. I jumped at the chance. No more complications and no more pain. I know your situation differs vastly, but having one kidney removed gives you one healthy kidney . They can and often do kick in and take up any slack from being the solitary kidney. Having the tumor gone should give you great relief.

Best of luck on your decision. Keep us posted . Blessings

[Teekay2 in reply to KidneyCoach]

Thanks

[PKDpostTRANSPLANT]

My kidney donor, my mom, my grandma and a friend of mine have all have had a nephrectomy. My grandma and my friend both had kidney cancer. I was with my mom in the hospital for her nephrectomy due to extremely enlarged polycystic kidney disease and I was with my kidney donor during hers since we did our operations at the same time. So I can only speak for this option and not the others. All of theirs went well and you are right that it is a simpler operation now. They used to have do perform open surgery for nephrectomy but recently they have started doing them using a laparoscopic procedure which is less risky and has a faster recovery. It does take a little time for your remaining kidney to grow and take in the job of both kidneys, so your egfr will be lower at first and then start to increase some as the kidney adapts.

If I were in your shoes I would start by looking at your age. Is the risk of a partial nephrectomy worth it if you are older? I would think that would only be a good option if you are younger and looking at wanting to preserve your kidneys for many years. Even so, most of the time you can live a very long time with one kidney and no issues, which is why live donor transplants are a good option for people needing a kidney transplant however, they check out these candidates thoroughly to make sure they have no kidney disease or other contraindications and that they are a good candidate for donation, which is not your case.

Monitoring it may be okay, but some things to ask are if it continues to grow will you be forced to have an open surgery or is laparoscopic surgery still going to be an option down the road?

Another question to ask is if any of your current medications are toxic to the kidneys. Would having a nephrectomy cause you to have to change medications (you will want to avoid nephrotoxic medications with a single kidney to preserve it's life and function).

Hope I am not overwhelming you, just giving you questions to talk to your doctor about so you can make an informed decision. It doesn't feel good to be faced with a decision and not know what to be asking or thinking about.

[Teekay2 in reply to PKDpostTRANSPLANT]

Thanks for all that. Your experience is very helpfull. I am 77 years of age so don’t need to think too far into the future. My initial feeling was for full nephrectomy as was my wife’s. I have spoken to a Macmillan Nurse on the ‘phone which has been helpfull.I will have to check with both my Rheumatologist and Urology about the meds. When I asked the consultant who will do the operation about being immunosuppressed he said they were concerned with blood loss not infections.

I have decided not to have the operation in January as it is too soon for me to get organised and I would prefer not to be in hospital in winter when so many bugs are rampant.

My main concern is finding and putting in place support for my wife who cannot manage alone.

Thanks and Best Wishes

[5157]

My husband was in his late sixties when he had a partial Nephrectomy. They did this procedure laparoscopic. It was maligant.He didn't have chemo and he is doing fine kidney-wise. He is now 76.