Lung nodules found

DMike

Well, I hate to break the streak of NEDs we've been getting lately, but my CT scan from yesterday was not good. I have 2 nodules in my right lung.

I had the scans yesterday but the computer system wasn't working properly and my doctor did not get the radiology reports. He did have the scans and thought they looked good however he did say he saw a lung nodule. He said we'd have to wait for the report. I called back this afternoon to check on the reports and got the bad news over the phone.

Looking back at my past 3 CT scan reports, it appears there was something there from the beginning but they have just reached a size that has become alarming. One has grown from ..4 X .3 cm to 1.2 X 1.4 cm in the past 6 months. The other has grown from 2mm to .8 X .8 cm.

I'll be seeing an oncologist soon after January 1 because most people are on holiday next week. All I know to do now is see what the oncologist says and make plans for phase 2 of this mess.

--David

dhs1963

I too have had lung nodules found this week.
I was at The National Institute of Health for familial kidney cancer studies. While there, they identified a lung mass 2 x 1.5 cm. I get followup testing next week and will meet with the Thorasic surgeon. I was not ready for round two, but apparently, it was ready for me. Good luck David.

David S.

pjune127

Hang in there David. There's
Hang in there David. There's a big arsenal of powerful weapons that will zap those little suckers in no time. Meanwhile, enjoy every day until you go to the doctor. Try not to think about it. (easily said, but we've all been in that boat). I had to wait 6 weeks with no meds to start the trial in Nashville! My thoughts and prayers are with you.

Love, Paula XO

pjune127

dhs1963 said:

I too have had lung nodules found this week.
I was at The National Institute of Health for familial kidney cancer studies. While there, they identified a lung mass 2 x 1.5 cm. I get followup testing next week and will meet with the Thorasic surgeon. I was not ready for round two, but apparently, it was ready for me. Good luck David.

David S.

and you too, David S.
What follow up testing are you doing? And meeting with a surgeon? Are you considering surgery? Keep us informed. I have several lung mets and that is why I am taking the experimental drug in a clinical trial. It is a form of immunotherapy, giving my t cells the ability to attack rcc cells that put up an invisible shield...

You will be in my thoughts and prayers as well.

Paula XO

Texas_wedge

pjune127 said:

and you too, David S.
What follow up testing are you doing? And meeting with a surgeon? Are you considering surgery? Keep us informed. I have several lung mets and that is why I am taking the experimental drug in a clinical trial. It is a form of immunotherapy, giving my t cells the ability to attack rcc cells that put up an invisible shield...

You will be in my thoughts and prayers as well.

Paula XO

Lung nodules
Yep - don't get too dismayed about it - lung mets seem to be particularly responsive to treatment. One notable member of the KIDNEY_ONC list has been in full remission for 8 or so years after having hundreds of lung mets and since then we have numerous and multiplying new lines of approach, as Paula hass said.

Moraboy

Texas_wedge said:

Lung nodules
Yep - don't get too dismayed about it - lung mets seem to be particularly responsive to treatment. One notable member of the KIDNEY_ONC list has been in full remission for 8 or so years after having hundreds of lung mets and since then we have numerous and multiplying new lines of approach, as Paula hass said.

Lung Mets
On Monday I had a nasty met in my right lung removed. It had almost totally blocked the bronchi to my lung, and this is my "good" lung. I can know breath better then at any point in the last 5 months. This met didnt show up on any scan or xray. Mu pulmanary doctor had a hunch and did a bronchi scope and found it.i love it when doctors work together. I also started my radiation treatments on my left lung met, their big and stubborn. Doing 10 treatments waiting and seeing if they are having any affect. I have also had my meds changed from Votrient ( which didn't touch the lung mets), to Afintor we will see how this goes. Have a good weekend.

dhs1963

Texas_wedge said:

Lung nodules
Yep - don't get too dismayed about it - lung mets seem to be particularly responsive to treatment. One notable member of the KIDNEY_ONC list has been in full remission for 8 or so years after having hundreds of lung mets and since then we have numerous and multiplying new lines of approach, as Paula hass said.

Followup testing for me
My followup testing includes:
Pulminary Function Test
Chest X-ray
PET scan
Brain MRI

This will all be done next friday. I meet with a thoracic surgeon after the holidays. My growth is small, and it could be old. I am concerned and anxious, but I am being treated by some of the best Dr's in the country (at NIH).

DMike

Moraboy said:

Lung Mets
On Monday I had a nasty met in my right lung removed. It had almost totally blocked the bronchi to my lung, and this is my "good" lung. I can know breath better then at any point in the last 5 months. This met didnt show up on any scan or xray. Mu pulmanary doctor had a hunch and did a bronchi scope and found it.i love it when doctors work together. I also started my radiation treatments on my left lung met, their big and stubborn. Doing 10 treatments waiting and seeing if they are having any affect. I have also had my meds changed from Votrient ( which didn't touch the lung mets), to Afintor we will see how this goes. Have a good weekend.

Thanks!
Thanks everyone! I appreciate the kind words and the encouragement. Now I have a new area of RCC to research. It's kind of weird because I felt like I understood the level of RCC I was involved with before yesterday. Now I've entered an entirely new phase and I feel lost again like I was a year ago. I know it will get better with understanding but I'm kind of pissed right now.

My goal on the bike was to have a 5000 mile year, the year following surgery, well I'm 160 miles from that goal. I'll get there easily (if I get out of this funk.) Don't worry, I won't let this keep me from my goal.

David S., Moraboy, Paula, Tex and others, I'm thinking about you as you fight the good fight!

--David

Limelife50

DMike said:

Thanks!
Thanks everyone! I appreciate the kind words and the encouragement. Now I have a new area of RCC to research. It's kind of weird because I felt like I understood the level of RCC I was involved with before yesterday. Now I've entered an entirely new phase and I feel lost again like I was a year ago. I know it will get better with understanding but I'm kind of pissed right now.

My goal on the bike was to have a 5000 mile year, the year following surgery, well I'm 160 miles from that goal. I'll get there easily (if I get out of this funk.) Don't worry, I won't let this keep me from my goal.

David S., Moraboy, Paula, Tex and others, I'm thinking about you as you fight the good fight!

--David

Sorry
Sorry David i know this sucks,it knocks us down then we get right back up even more pissed off than before

angec

Texas_wedge said:

Lung nodules
Yep - don't get too dismayed about it - lung mets seem to be particularly responsive to treatment. One notable member of the KIDNEY_ONC list has been in full remission for 8 or so years after having hundreds of lung mets and since then we have numerous and multiplying new lines of approach, as Paula hass said.

Sorry to hear about the lung
Sorry to hear about the lung mets. But they are relatively small, now would be the time to act on it and zap them away! TW, was that person who is without mets for 8 years on any meds all of this time?

foxhd

Limelife50 said:

Sorry
Sorry David i know this sucks,it knocks us down then we get right back up even more pissed off than before

Trials
David, be ready to talk to your Dr. about available trials. You'll get through this. It's just part of the challenge.

alice124

Lung Nodules
David - Sorry to hear your NED status has been interrupted but I'm confident it will be temporary. I recall how fast John's lung mets grew between his IL2 treatment and Nivolumab/Votrient trial. It was a scary time so I feel your fear. But as frightening as it was, it was the first point of attack for the trial drugs. I agree with Fox; get ready to talk trials with your oncologist. Know we're all with you!

alice124

dhs1963 said:

I too have had lung nodules found this week.
I was at The National Institute of Health for familial kidney cancer studies. While there, they identified a lung mass 2 x 1.5 cm. I get followup testing next week and will meet with the Thorasic surgeon. I was not ready for round two, but apparently, it was ready for me. Good luck David.

David S.

lung nodules
David S - Regret the finding. But I'm glad they found it before the mass/nodule found you with nasty symptoms. NIH is a good place to have on your team. Keep us posted.

alice124

Moraboy said:

Lung Mets
On Monday I had a nasty met in my right lung removed. It had almost totally blocked the bronchi to my lung, and this is my "good" lung. I can know breath better then at any point in the last 5 months. This met didnt show up on any scan or xray. Mu pulmanary doctor had a hunch and did a bronchi scope and found it.i love it when doctors work together. I also started my radiation treatments on my left lung met, their big and stubborn. Doing 10 treatments waiting and seeing if they are having any affect. I have also had my meds changed from Votrient ( which didn't touch the lung mets), to Afintor we will see how this goes. Have a good weekend.

Lung mets
Let's hope Afinitor gets the lung mets the radiation doesn't. Good luck!

Texas_wedge

angec said:

Sorry to hear about the lung
Sorry to hear about the lung mets. But they are relatively small, now would be the time to act on it and zap them away! TW, was that person who is without mets for 8 years on any meds all of this time?

Lung mets
Ange, that was on HD IL2 therapy at a time when there was nothing else (aside from interferons) in the way of systemic therapies. Rather than risk giving you an inacorrect answer, I've just asked her for the accurate answer and a couple of minutes ago got her reply, so, hot off the press:

"I have had NO treatment, but did fall and break my wrist while skiing two
years ago. I have also traveled to Europe about five times, had two
grandbabies, and have started a program on patient advocacy.

You certainly may quote me, or have anyone talk to me, give out my email
address, anything to help another patient get the treatment--whether this
or any one--that are available.

Love to spread the news of the possibility of a cure.

Peggy"

angec

Texas_wedge said:

Lung mets
Ange, that was on HD IL2 therapy at a time when there was nothing else (aside from interferons) in the way of systemic therapies. Rather than risk giving you an inacorrect answer, I've just asked her for the accurate answer and a couple of minutes ago got her reply, so, hot off the press:

"I have had NO treatment, but did fall and break my wrist while skiing two
years ago. I have also traveled to Europe about five times, had two
grandbabies, and have started a program on patient advocacy.

You certainly may quote me, or have anyone talk to me, give out my email
address, anything to help another patient get the treatment--whether this
or any one--that are available.

Love to spread the news of the possibility of a cure.

Peggy"

So no treatment after the
So no treatment after the IL2? That is wonderful! Thanks TW! xxoo PS TW, did your hair turn white or Red?

Texas_wedge

angec said:

So no treatment after the
So no treatment after the IL2? That is wonderful! Thanks TW! xxoo PS TW, did your hair turn white or Red?

IL2 etc
Peggy's offspring are all writers and she writes very attractively. You might want to sample her blog at:

http://peggyrcc.wordpress.com/2012/12/

The parts of my hair that were whitish are still whitish (well, near enough white, to be honest!) but the psrts that were red (not on public display) are still red!

jennsam

foxhd said:

Trials
David, be ready to talk to your Dr. about available trials. You'll get through this. It's just part of the challenge.

nodules

4 mo post op RCC stage 1 grade 2 partial Laproscopic nephrectomy. I have nodules 2 in my left lung with effusion and 1 on my colon....everyone is unconcerned saying its too early after surgery to access the nodules they are in the 2-6 mm range (small) When should I push? Since 5 weeks post op I have had pneumonia( in hospital 5 days) Bronchitis 3 weeks later, had the Flu 2 weeks ago now sick again with 102 fever and coughing up brown junk....

   Please keep us informed of what the doc says so I dont feel like a total idiot asking for uneccessary testing.  I am supposed to have a kidney sono in FEB only and 1 year CT SCAN in AUG....waaay to long.

TY

dhs1963

jennsam said:

nodules

4 mo post op RCC stage 1 grade 2 partial Laproscopic nephrectomy. I have nodules 2 in my left lung with effusion and 1 on my colon....everyone is unconcerned saying its too early after surgery to access the nodules they are in the 2-6 mm range (small) When should I push? Since 5 weeks post op I have had pneumonia( in hospital 5 days) Bronchitis 3 weeks later, had the Flu 2 weeks ago now sick again with 102 fever and coughing up brown junk....

   Please keep us informed of what the doc says so I dont feel like a total idiot asking for uneccessary testing.  I am supposed to have a kidney sono in FEB only and 1 year CT SCAN in AUG....waaay to long.

TY

If the nodules are related to RCC...

If the nodules are related to the RCC, you did not have stage 1.  The nodules are very small.  And if your Dr. makes you feel like an idiot for asking questions, time to find a new Doctor.  

 

Flu followed brochitis is very common for me.  

DMike

alice124 said:

Lung Nodules
David - Sorry to hear your NED status has been interrupted but I'm confident it will be temporary. I recall how fast John's lung mets grew between his IL2 treatment and Nivolumab/Votrient trial. It was a scary time so I feel your fear. But as frightening as it was, it was the first point of attack for the trial drugs. I agree with Fox; get ready to talk trials with your oncologist. Know we're all with you!

Update

I had a PET scan and met with my thoracic surgeon this week. I also learned this week that the radiology report shows 25 nodules scattered across both lungs. I have no idea why I wasn't told this. I was only told there were 2 nodules that had increased in size. The others must be too small to measure. I don't have an answer yet why I wasn't told.

Anyway, I'll be having VAT surgery on February 11 to remove some of the smaller nodules near the periphery of my left lung. He said he's not going after the larger nodules because of their location deep in the lung. Then we will have the pathology report which surely will indicate RCC. My inclination is to go with HD IL-2.

A new complication arose this week which will probably delay surgery. I have shingles. I had shingles 20 years ago and it was far worse than this but I guess it wanted to visit again. Nothing like an unwelcome guest.

I rode my bike today. It was raining.

--David

 

foxhd

DMike said:

Update

I had a PET scan and met with my thoracic surgeon this week. I also learned this week that the radiology report shows 25 nodules scattered across both lungs. I have no idea why I wasn't told this. I was only told there were 2 nodules that had increased in size. The others must be too small to measure. I don't have an answer yet why I wasn't told.

Anyway, I'll be having VAT surgery on February 11 to remove some of the smaller nodules near the periphery of my left lung. He said he's not going after the larger nodules because of their location deep in the lung. Then we will have the pathology report which surely will indicate RCC. My inclination is to go with HD IL-2.

A new complication arose this week which will probably delay surgery. I have shingles. I had shingles 20 years ago and it was far worse than this but I guess it wanted to visit again. Nothing like an unwelcome guest.

I rode my bike today. It was raining.

--David

 

Well, I

hope you had a good ride anyway. I remember having some of the best runs when my lungs were loaded. And it never bothered me. My breathing was excellent.

I was not expecting to hear about the increase in those nasty buggers. But you sound ready to get them.  I'm glad you have a plan. Too often it is , "What should I do?"

I'm beginning to think cancer is a PIA. Have you Dr. spend the night before surgery in a Holiday Inn. (when I had my nephrectomy, the doctor asked if I had any questions and I asked him if he slept well the night before and told him I hoped he spent the night in a Holiday Inn.)  We have to go at this head on. Right David? Good luck. Fox.