Suspected RCC midpole of right kidney, radical nephrectomy planned in two weeks time

LolliG

My husband is scheduled to have right kidney removed laparoscopically after a highly suspicious mass in the midpole was found in incidentally on imaging in connection with a liposarcoma discovered last month. The liposarcoma was removed with clear margins, and apparently is unconnected to the kidney mass, which is suspected to be a primary renal malignancy. CXR and CT abdo show no evidence of metastases. My husband is a 49 year old marathon runner, otherwise very fit and healthy. This is all new for us, have never experienced something like this before. I have a few questions in case anyone is able to help please.

Is it correct that if the cancer is all contained in the kidney, then after radical nephrectomy, no further treatment would be needed?

Should other scans be done to check there is no further disease?

How regular should follow up checks be, after surgery is done?

What should we expect post operatively - will the recovery take long? What precautions should we take? Any advice to help with recovery?

Any encouragement or tips you can give us would be appreciated. Am feeling quite scared by this diagnosis, yet I see there are many positive stories on this forum. Thank you.

tgpath1

I am so sorry that you are going through this! Cancer is always scary but as they go, kidney cancer is one of the better ones specifically because once they remove the cancerous kidney, the cancer is gone. There is no further treatment as long as it was contained. Once the kidney is removed, the doctor will continue to order scans to monitor for cancer. Every doctor is a little different but mine did MRI and chest CT every three months for the first year. I just passed the one year mark and we are switching to every six months but same scans for now. Some use MRI, some use CT, some use ultrasound. My doc told me that I will be monitored for a long time (beyond the typical five years) because I was stage 3 and young for this type of cancer (I had just turned 50 when I was diagnosed). I would suspect that your husband will be in a similar situation with monitoring. Follow ups are up to the doctor but you will talk to a doctor with each scan just to review and discuss results.

Post operative, everyone has a different experience. I took six weeks out of work but went back after four weeks. Some people on this page have said that they were walking three miles within the first week, I could barely move after the first week...it's just different for everyone. My personal recommendations are to have a body pillow for sleeping (laying on your side is tough for a while) and lidocaine patches for near the incision. The patches were a game changer for me to help me move more easily. Others have suggested to have a pillow to cushion your abdomen on the way home (wish I had found this forum BEFORE my surgery to get that tidbit). And mostly, have him get up and walk as much as possible as often as possible.

You will find sooo many positive people on this forum...they really help you get through it! This is all so scary and we have all been there so we get it! The good news is that so many people on here are years out from their diagnosis and doing great! I am only one year cancer free and the anxiety was very real, but as time goes on, it does get easier. While the diagnosis is scary and can seem overwhelming, take it one day at a time and ask any questions that you have.

Good luck with his surgery...stay strong and know that we are all praying for you both!

LolliG

https://csn.cancer.org/discussion/comment/1694382#Comment_1694382

Thank you so so very much for taking the time to write this reply. It means a lot to me and is so helpful! The tips for pillow on trip home etc are excellent… really appreciate that. Thank you very much. Really hope you continue doing well with your great progress.

Mmoses25

Sorry you had to join group I agree with tgpath1 once it’s gone then keep up up with your scans mine was stage. 3 also going on. Two years now all good scans I get scans every three month just about to switch to every 6 months I had open surgery I was in hospital for a week got out. After a week got around good I hope the best for your husband i will keep you in my prayers good luck don’t ever give up

LolliG

https://csn.cancer.org/discussion/comment/1694445#Comment_1694445

Thank you very much for the encouragement and advice. So glad your recent scans clear, great news. Many thanks for your feedback and best wishes to you

Deanie0916

Hi LolliG and hubby, sorry about this unexpected and scary diagnosis. I agree with tgpath1 walking as soon as you are able. Because he's fit and healthy that will work towards a good recovery. Keep us updated will pray for good outcomes all around!

LolliG

https://csn.cancer.org/discussion/comment/1694466#Comment_1694466

Thank you very much for this!

eug91

Hi LolliG,

Sorry you had to join us, but as you can already see, this is a great forum here. We've been through what you and your husband are going through, so we know you're going to do great. We're here for you if you have any questions or just need someone to listen.

In addition to the great advice you've gotten above-

RE: FURTHER TREATMENT. After the nephrectomy, they'll biopsy the cancer and check its stage, grade, margins, what kind of kidney cancer. But for most of us after our nephs, it's just regular follow-up scans to make sure it hasn't come back or spread.

RE: SCANS/CHECK-UPS. It'll be up to your doctor. For most of us, there's some version of CT/MRI scans every 6-12 months. You can click on my profile and see what my doctor scheduled for me.

RE: POST SURGERY. The big tip that I got is that walking will help immensely with recovery. Nothing too strenuous at first. In the first few days after my neph, I had an audio book on my phone and just went for a walk around the house, shuffling back and forth down while listening to a chapter or until I got tired (whichever came first). Just slow steady walking. Then eventually outside and on my treadmill. If your husband's a marathon runner, I'm sure this will come naturally to him. Just make sure he listens to his body - everyone heals up at a different pace - but the walking will help immensely.

Let us know if you have any questions. We're with you. You've got this.

LolliG

https://csn.cancer.org/discussion/comment/1694475#Comment_1694475

grateful for your practical advice and positivity and encouragement. It means a lot. Thank you!

Tobi

Had the very same problem. Tumor found in the middle of my right kidney as an incidental finding from a ct scan that was looking at my gallbladder. It's scary at first, especially when you have a lot of unknowns. I was terrified. Mine was stage 1a and a grade 1 tumor, so my follow ups happen every 6 months with my first one being a chest xray and blood work. How often you get scans and what type depends on your dr and how advanced or in cases like mine not advanced your cancer turns out to be. As for scans before surgery I had the CT that found it and an MRI to take a closer look. In my case there was no other scans to look for metastasis because they were waiting for removal and pathology to see if it was necessary. Tumors like mine are unlikely to spread so I didn't have any. I will say it's natural to be scared, and I was upside down, but after surgery and pathology came back I found out I was going to be fine for a good long time. Mine was RCC clear cell type 3.5cm, and the dr told me 99% chance the surgery was curative. I hope it helps some with your fears, and remember everyone here has been through it. They helped me more than I can put into words.

LolliG

https://csn.cancer.org/discussion/comment/1694510#Comment_1694510

This is so encouraging, thanks for replying. Was just what I needed to hear, as I always tend to imagine worst case scenarios. But good to be reminded there are better case scenarios too. Really glad for your outcome and thanks for sharing.