Four years after kidney removal.... it's baaaaaack...

grtdane

Hi everyone. I had my left kidney removed, T1B, fuhrman grade of 3, about six cm, four years ago. (clear cell). I get regular scans for aortic stenosis and while the yearly chest xrays and abdominal ultrasounds were clear, a recent CT scan for the heart found two pulmonary nodes and some lymph nodes that were suspicious. 

Report reads: "In the right middle lobe there are 2 pulmonary nodules, new from previous. One is circumscibed lobulated measuring 1.9  by 1.4 cm. A second is more triangular in shape measuring .7 cm. Lymph nodes with central hypodensity suspicious for necrotic nodes are seen in the subcarinal and right infrahilar region measuring up to 1.6 cm...."

Urologist says its the kidney cancer, and has referred me to a lung specialist for a biopsy. He said just getting in to see him would take six weeks! I feel like that is a long time just to see a guy who will then set a date for surgery weeks after that (while it travels?). Anyway, this forum has eased some of my fears about my future demise, so thank you. 

Since I have all this time to wait, I was wondering if anyone has a hypothesis about how this is going to play out? I have a five year old boy, a beautiful wife and a full time job. This, needless to say, does not fit into my plans! Thanks everyone. 

icemantoo

Chest CT Vs. Xray

grtdane,

Like you I only had Chest Xrays at first. Eleven years later I had a chest CT which found small nodules in the 3-5 mm range. A chest CT only picks up nodules 8mm or larger. those under 8mm are usually benign unless they grow. Usually they have to be at leat 1cm to biopsy. I suspect they want to wait 6 weeks to determine if there is any growth and take another Chest CT to determine that. You may also want to consult with an oncologist as well. Hopefully they will be negative for Cancer and if not sucessfully treated. There are many on this forum who have had sucessful treatment where RCC showed up  in the lungs.

 

A number of years ago my neighbor across the street,  Faye up North was diagnosed with Kidney Cancer from a Chest Xray which showed nodules on her lung and from that they diagnosed RCC and took out her kidney.  Faye was only 64 than. Since moving to Florida Faye is still doing fine and is 85 now. She lost her husband last year and was his caretaker for at least 5 years.

 

 

Icemantoo

Footstomper

We're not Doctors

But I can speak with some confidence about Ancient History. And having kidney cancer with mets in my lungs. 1st observation; they are tiny! Well mine are/have been much bugger. Ive had them since I was diagnosed on May 1st 2013. Ive taken a series of different drugs/proceedures which have reduced them in size until they stopped working or had crappy side effects. Eventually I found a drug, which reduced the mets and had pretty much no side effects. The addition of radiation reduced my biggest from 7 (10 xbigger than yours) to 3.5 cm. I have another 2cm and frankly I feel great.

The thing is about RCC is that the only predictable thing about it is its unpredictability.

I dont think you need to worry about changing your plans just yet.

Sorry to meet you here but good luck.

grtdane

Thanks for the replies!

Thanks everyone. Nice to be here. Like I said, I was reading stats on the web that was not at all encouraging. I must say the involvment of lymph nodes is worrisome to me, which is why I mentioned about the cancer spreading. Way back in the eighties, as a teenager, I had Hodgkins disease, stage three, in my lungs and liver. and had a year of chemo and six months radiation back then. I am 47 now and still kicking! I will make sure to keep checking in and give updates when I get them. Thanks again! 

Footstomper

grtdane said:

Thanks for the replies!

Thanks everyone. Nice to be here. Like I said, I was reading stats on the web that was not at all encouraging. I must say the involvment of lymph nodes is worrisome to me, which is why I mentioned about the cancer spreading. Way back in the eighties, as a teenager, I had Hodgkins disease, stage three, in my lungs and liver. and had a year of chemo and six months radiation back then. I am 47 now and still kicking! I will make sure to keep checking in and give updates when I get them. Thanks again! 

Google is NOT your friend

Dont research this stuff online! The subject is changing so quickly that almost everything you find will be out of date. If its not out of date then its just downright crazy. On the otherhand, if you see hope in stale alien mucus, go right ahead. 

The only boards I trust are this one and Smartpatients, which I find a bit more technical and scientific.

Be careful: There be dragons!

Jojo61

Welcome grddane! Sorry for

Welcome grddane! Sorry for the initiation - in your case double initiation! Reading stats online is of no use - they are outdated and very depressing!

Iknow the waiting is the clincher in all of this. Hang in there!

Hugs

Jojo

grtdane

Footstomper said:

Google is NOT your friend

Dont research this stuff online! The subject is changing so quickly that almost everything you find will be out of date. If its not out of date then its just downright crazy. On the otherhand, if you see hope in stale alien mucus, go right ahead. 

The only boards I trust are this one and Smartpatients, which I find a bit more technical and scientific.

Be careful: There be dragons!

Thanks Footstomper, and I

Thanks Footstomper, and I have to say I've read some of your replies on the forum and absolutely love your energy. Keep on stompin' my friend! 

grtdane

Jojo61 said:

Welcome grddane! Sorry for

Welcome grddane! Sorry for the initiation - in your case double initiation! Reading stats online is of no use - they are outdated and very depressing!

Iknow the waiting is the clincher in all of this. Hang in there!

Hugs

Jojo

Will do, thanks Jojo! 

Will do, thanks Jojo! 

Hd67xlch

My situation was similar

except I went 5 years without it coming back. Its not a lung specialist  that biopsies them its a interventional radiation specialist (sure I spelled that wrong), I had it done, its a needle biopsy, no big deal you are awake when they do it, takes a half hour or so, and I got the results within a hour, its done in the hospital.

Ive had 4 wedge resections, 2 on each lung, no biggie 5 days in hospital. I had two removed from my left lung Jan 3 2017 going back to work in the morning.  JMO, but you will do better to have traditional thoractomy if you choose the surgery route. The surgeon can feel nodules that are too small to show up on the scans and get them out, if you have vats or robotic they will miss the real small ones that dont show up on the scans. When I had my right lung wedge resections the two 1.0 cm ones were known, when he felt around my lung he found 4 more that were way to small to show up on the scans, so he also removed those. If I had vats or robotic those 4 would have grown into something in my lung.

JMO, but go see a cadiovascular surgeon if your leaning towards surgery, they can get the lymph node and lung nodules all at once, odds are you can skip the whole biopsy thing, I did on my 2nd surgery, the surgeon  can tell by looking at them on the screen what they are with a fair amount of certainty. The surgery isnt that bad, JMO.

grtdane

Hd67xlch said:

My situation was similar

except I went 5 years without it coming back. Its not a lung specialist  that biopsies them its a interventional radiation specialist (sure I spelled that wrong), I had it done, its a needle biopsy, no big deal you are awake when they do it, takes a half hour or so, and I got the results within a hour, its done in the hospital.

Ive had 4 wedge resections, 2 on each lung, no biggie 5 days in hospital. I had two removed from my left lung Jan 3 2017 going back to work in the morning.  JMO, but you will do better to have traditional thoractomy if you choose the surgery route. The surgeon can feel nodules that are too small to show up on the scans and get them out, if you have vats or robotic they will miss the real small ones that dont show up on the scans. When I had my right lung wedge resections the two 1.0 cm ones were known, when he felt around my lung he found 4 more that were way to small to show up on the scans, so he also removed those. If I had vats or robotic those 4 would have grown into something in my lung.

JMO, but go see a cadiovascular surgeon if your leaning towards surgery, they can get the lymph node and lung nodules all at once, odds are you can skip the whole biopsy thing, I did on my 2nd surgery, the surgeon  can tell by looking at them on the screen what they are with a fair amount of certainty. The surgery isnt that bad, JMO.

This is super helpful, thanks

This is super helpful, thanks so much for sharing. I feel like now when I see the guy I was referred to (a pulmonologist) I will have a better idea what to expect. I live in Canada so it will be interesting to see what route they want me to follow. I will keep ya posted. All the best! 

lobbyist0724

grtdane said:

This is super helpful, thanks

This is super helpful, thanks so much for sharing. I feel like now when I see the guy I was referred to (a pulmonologist) I will have a better idea what to expect. I live in Canada so it will be interesting to see what route they want me to follow. I will keep ya posted. All the best! 

I am so sorry to hear the

I am so sorry to hear the progression. I would suggest you to join the discussion forum of KidneyCancerCanada.ca

I am sure the members there including Deb Masken will be able to provide more suggestions to you.

icemantoo

Oh Canada

grtdane,

 

At least you don't have to worry about losing your health care. Before moving to Florida we lived just North of Canada in Detroit. I also have a little Canadian in me as a Destination Expert on Trip Advisor for Algonquin Park.

mrou50

Doctors

Don't worry right now about what might be, let the doctors determine what the growths are.  Just enjoy your family and as FootStomper said stay away from the web on this the info is mostly outdated. 

Good Luck

Mark

Jan4you

grtdane, you can always come

grtdane, you can always come here for help and support. We'll walk this journey along side you, if you want us to.

Keep us informed. Sorry you have to wait. ARe you on a waiting list?

Sending you healing hugs,

Jan

grtdane

Update

Hi all, it looks like the lung specialist has scheduled me right in for a bronchoscopy for a lung biopsy I think, feb. 4, so that will speed things up. I haven't even seen him but I guess he knows thats what they want and I will be referred over to the oncologist if it is positive, just guessing here. Thanks for all the positive comments. I will let you all know what the results are.