New Here: Question Regarding Kidney Cancer Followup Care

[MatthewInMA]

I'm a 44-year old male and I was diagnosed with renal cell carcinoma (kidney cancer) at the beginning of last November then had the kidney removed (radical nephrectomy) in mid-November. The tumor was very large (approximately 18 cm) and had grown into the inferior vena cava so they also performed an IVC thrombectomy and removed my adrenal gland and a section of the neighboring lymph node. Fortunately no cancer was present when those tissues were tested.

I just had bloodwork done on Friday and I’m having CAT scans of my chest, abdomen and pelvis later this week, all in advance of a 3-month follow-up appointment with my surgeon next week. My surgeon is also a urology oncologist, however when I met with him after surgery he said this meeting would also be attended by an oncologist from the hospital he is affiliated with.

Obviously I'm hopeful and I'm praying that no cancer is found, however I'm going deeper into debt with all of the medical bills from last year and all the bills I'll be incurring moving forward. I'm inclined to cancel the appointment for next week and only reschedule if there's anything found in either the bloodwork or the radiology to try and at least minimize my medical bills, but I recognize this isn't ideal. Is there anything wrong with this approach or does anyone have any advice to offer regarding this?

When I call the provider to ask why there is a need for this appointment assuming no cancer is found, the best answer they can give me is it's to connect me with an oncologist should one be needed moving forward. As it is I'm going to be paying the medical bills from surgery last year for years to come, let alone the bills I'll start receiving for the follwoup testing. I really don't want to incur any additionl bills for anything that might not be absolutely necessary, yet I don't want to take any significant risks either. I'd imagine an oncologist would be available to me if at some point I need one, and honestly I'd rather not miss more work to go meet with doctors at a cancer center unless I really need to.

Some other questions or concerns I have is when explaining the diagnosis to me post-surgery the surgeon mentioned that the cancer could come back anywhere in the body. If that's the case, wouldn't it go undetected in many parts of the body if all that is being scanned are my chest, abdomen and pelvis? Lastly, is there reason for concern with the contrast they'll use for the CAT scans given I have just the one remaining kidney? This wasn't a concern until today when I was looking for a place to ask my primary question and then I stumbled across a post on this topic.

Thank you all for any advice you can provide and best of luck with everyone's recovery. You're all in my thoughts and prayers.

Sincerely,

[Trooper381]

Matthew I will provide you with information on what I did and the results of those actions. I am not saying that this will be right for you but maybe it will give you some sense of what someone else did, why and what the outcome was. I was also 44 years old when I was diagnosed with renal cell carcinoma and I also had a radical nephrectomy with the removal of my entire kidney, adrenal gland and lymph node. I was fortunate that I am now 66 years old and very healthy so have hope and faith that you will continue to recover and be free of cancer for years to come.

I was also referred to an oncologist by my urologist and I took full advantage of that opportunity as he was well versed on different protocols should the cancer have returned. I felt it was important to go for regular check ups and to catch any potential return of cancer as early as possible. I went for CT scans for years and then chest x-rays as years passed. They used a different contrast because of having only one kidney and although I only had this done for about 5 years I had no side effects and my remaining kidney is working completely fine.

Keep in mind I am not a doctor but I was told and have read that the most likely place for kidney cancer to reappear is in the lungs or one of your other organs and although it can reappear in other spots the best defense as far as follow up check ups go are to have the CT scans so I was diligent about these check ups.

I know every single case is different and this is just what I did...keep the faith!

[MatthewInMA in reply to Trooper381]

Thank you for the reply Trooper. The similarities in our ages and diagnosis make hearing your successful outcome even more meaningful. Hoping for continued halth for you moving forward.

SIncerely,

[oncowoman]

Matthew, i think the advice from Trooper 381 is spot on. I had 5 tumors in my left kidney but they were much smaller. The largest was 3 cms and they all turned out to be benign. So I can't offer any advice on how to go forward with treatment. But I thought I would at least put out there for you to talk to your doctor about the financial condition you are in. Perhaps there is some way to have the medical bills reduced or put on a payment plan that is less of a financial hardship. If there is anyway you can get to the appt to meet with the oncologist as well as your urologist that would be good. But if there is no spread maybe can your urologic oncologist agree to follow your care or transfer your care over to the oncologist so that you are only paying for one specialist. If there is no recurrence or spread they are just ordering tests and looking at results (and I don't mean to denigrate that role with the use of the word just- mean that they won't be treating you). Wishing you well.

Debbie in NJ

[MatthewInMA in reply to oncowoman]

Thank you Debbie, much appreciated.

[greg1976]

HI, I also started with Urologist but soon after my operation, I asked to be referred to an Oncologist. I am glad I did, he is great. I had a full body scan done at 1 year to get a baseline and snapshot of my entire body for cancer. That is when they discovered the cancer was in my lung, lymph node between my lungs, and thyroid. Received additional treatment afterwards and they continued to do CT scans with contrast very often to monitor cancer. As long as you drink lots of water, have your other kidney function tested, the contrast should not be a problem. It has not been an issue with me. I am now down to one CT scan a year. (I was 54 when diagnosed.)

Most Hospitals have a Medical Financial Assistance program or can put you in touch with one. I looked into one but then my wife obtained a job in a hospital so we are very fortunate to have great coverage now. I totally understand your concern as that weighted me down for a while worrying about that.

I communicate with my Oncologist by email most of the time with no cost. He sends me the scan report and I go down to the Medical Records office and obtain all records including imaging on a DVD or thumb drive. I advise them it is for a second opinion and it is free of charge from our Hospital. If I tell them it is for my records, I get a charge.

I am 60 now, was stage IV with grade 4 out of 4. I am now off meds and there is no evidence of disease.

Prayers to you and your family.

Greg

[MatthewInMA in reply to greg1976]

That's great news Greg!! Many prayers to you and your family that your remission continues!

I just got back from having my CAT scans done this AM and I already received a phone call that no cancer was found!! I am so grateful and I hope others here are as fortunate as I am today.

I appreciate everyone's advice and the sharing of your experiences. I'll be checking in here regularly as the fight continues. For now I'm just looking forward to a relaxing stress-free weekend ahead.

Prayers and thoughts to you all.

Sincerely,

[Trooper381]

Congrats on the latest news!! Stay strong and keep the faith.

[Hampner]

Hi mat

They like you to have an oncologist. Surgeons are usually very busy. Oncologist probably easier to get ahold of. The ct they are ordering are pretty much standard. That is the usual area it spreads. There is another test called a PET scan it covers your entire body. Might give you more peace of mind. If you are dealing with a specialty hospital they usually have help with financial assistance, unless you make a lot of money. Also don’t let your pride get in the way have someone start a GoFundMe account. Every little bit counts. I’m 4 or so years into this, sounds like our tumors were same size. They took out my kidney too but it had spread to my lungs.

They are pushing oncologist because surgeons are usually so busy. These guys can handle the blood draws and stuff. If you haven’t call the cancer center society they can sometimes help.

I don’t catch these posts very often. If you ever want to ask something. You can contact me directly. [e-mail]

Don’t let it get u down.

Julie