Dear ,Dr. West my mother was diognoised with rcc in 2005 at that time the abdomen ct showed lung nodules at the lower lobe of both lungs now here it is almost 8 yrs later the multiple lung nodules are all stable except two in the right lower lobe and a new one in left lower lobe ,the one in the right lobe has increased in 5.8mm to 6.5mm in one yr so we rescan in 3 mths we have been doing this for 8 years now watching to see if it is metastatic cancer she has no symptoms at all .just had our three mth scan scan the increase was half to one mm in size he said the width of a toothpick and not to be worried at this time .we did a bronchscopy biopsy but not sure he got into the nodule because its so small but nothing shoed up except chronic inflamation ,so now we go back again in 4 mths to scan again ,i guess my question would be (does metastatic rcc actually take 8 or more years to become cancer ?Is there something else i should be doing for my mother its really frustrating to just keep watching when its so scary like something is going to happen just wait for it is what i feel that im doing ,the largest nodule is little over 1cm the rest are all very tiny ,what should i do ?thank you for your expertese and knowledge on this subject.
Reply # - November 29, 2012, 09:18 AM
sslk, I'm sorry you must worrying about your mom. We don't have expertise in rcc but below is a quote from Dr. West written a few weeks ago in answer to a very similar question. I will also ask our radiologist to comment.
"Here’s a podcast that covers all of these issues very well.
The key conclusion is that the technology is so good, the sensitivity to detect nodules now so high, that just about anyone can be found to have lung nodules. There is also some variability in how large nodules are, so that 1-2 mm is within the range of error.
Finally, I’d say that if a nodule grew to just 2 mm over a decade, that is so extremely slow that it is hard to imagine that would be a realistically threatening cancer.
-Dr. West" from http://cancergrace.org/topic/can-differences-in-ct-scan-technology-impa…
I really need to share this one too, http://cancergrace.org/lung/2011/08/09/limits-of-ct-scanning/
Good luck to your mom,
Reply # - November 29, 2012, 03:50 PM
Renal cell carcinoma can grow very slowly, so yes, it's possible it could be growing minimally over many years. Unfortunately, there's not really other options except to do a biopsy, as is being done, but the key question is, even if it's proven to be a cancer, is it clearly necessary or even appropriate to treat a cancer that is growing at an extraordinarily slow rate and is asymptomatic, just because you can see it on a scan? I have had a patient in a similar situation, who actually had a kidney cancer and a separate lung cancer, and the lung tissue had microscopic renal cell cancer deposits in them. That was 10 years ago, and he has never received treatment for the kidney cancer tiny metastatic disease in the lung, and it has never grown.
Reply # - December 4, 2012, 04:26 PM
thank you so very much for your response ,from what i have researched on this subject if the rcc in the lung grows at such a very slow rate if it is that ,i hear the treatment it really worse than the disease .I did read some of the info you put on here about the readings on cts .It brought back to me that the last two ct scans in which they said nodules had grown were done and read at a different facility ,so i have requested that the next scan be done where it has been done since 2005 at the shands university orthpedic center in gainsville fl the bottom floor is all radiology ,I think its best to stay in the same place using the same machine having the same peaple read it because at the other place is when they said it had grown and before that they were all stable ,do you think this is a good idea to go back where they have always been done at ?
Reply # - December 4, 2012, 06:57 PM
As a general principle, we do favor having scans done at the same facility, read by the same people.
Reply # - December 5, 2012, 01:43 AM
My husband goes to Shands Orthopedic Center for scans too. We prefer that facility since parking is so much easier and the wait time is short. Also we always wait to receive a copy of the scan. I'm not sure the same radiologist will read your scans since being a teaching facility they rotate every so often but at least we get the same machines. Good luck to your mom.
Reply # - December 5, 2012, 04:05 AM
thank you dr.west ,I will get back with you in about three months probably ,i appreciate all your info. it really does help alot ,thanks hope you have a wonderful day ,sharry
Reply # - December 5, 2012, 04:08 AM
thanks anne ,i hope all is going well with your husband ,is he going through the same thing as my mom or is it a different situation ,it really helps to have others to talk to .I also this next time will get a copy of the scan thats a good idea thanks so much ,sharry
Reply # - December 5, 2012, 04:20 AM
i guess the biggest thing that throws me off is when the urologist removed the tumor from her kidney he sai it was no where near the blood supply and should not worry about it spreading to any other area ,but here we are been following theses things since 2005 and not has changed but its scary to just keep watching and do nothing .we had a bronchoscopy done but it only showed chronic inflammation which we have heard before when my mom had congestive heart failure years ago the doctor told her she had lots of scar tissue in her lungs and has had a bad heart with atrial fib for years not sure if it has anything to do with what we are going through now aahhh so many questions on my mind thanks for all the input it really does help ,sharry
Reply # - December 5, 2012, 04:26 AM
Dr.West with this being at such a very slow growing rate is it correct that the treatment is actually worse than the disease itself ?
Reply # - December 5, 2012, 03:29 PM
That saying is confusing for me but I know what they are trying to say.
When you say the treatment is worse than the disease it seems to mean that there is a treatment that can be done. However there is no treatment that is recommended in this situation so there is no treatment to be worse than the disease. Does that make sense?
I want to paste a quote from Dr. West made on this thread Nov 29, " Unfortunately, there’s not really other options except to do a biopsy, as is being done, but the key question is, even if it’s proven to be a cancer, is it clearly necessary or even appropriate to treat a cancer that is growing at an extraordinarily slow rate and is asymptomatic, just because you can see it on a scan? I have had a patient in a similar situation, who actually had a kidney cancer and a separate lung cancer, and the lung tissue had microscopic renal cell cancer deposits in them. That was 10 years ago, and he has never received treatment for the kidney cancer tiny metastatic disease in the lung, and it has never grown."
The fact of the matter is this all sucks but there are many people on this board who would share positions with your mom. Watching and waiting is, living from one scan to the next is an excruciating life. People make do. Admittedly my husband has a difficult time with his unlikely position, it too is better than most. So hang in there, take it day to day and laugh as much as possible.
Reply # - December 5, 2012, 08:32 PM
Janine expressed this quite well (albeit with some of my quotes, so bonus points there). I am very wary about just reflexively treating something technically called cancer but not acting in a remotely threatening way just because of a name it is given. Most of our cancer treatments have a potential or great probability of real side effects that are justified if there is a clear threat from the cancer and benefit to treatment, but it's not appropriate to do treatments in asymptomatic patients with extremely indolent processes just because of a frantic "don't just stand there -- DO SOMETHING!" mentality.
Reply # - December 6, 2012, 04:53 AM
thank you for these responses ,from both Dr.West and janine ,Im sorry I overlooked some of things said in the first reponse , and repeating a question ,i feel like a 10 yr old whos just gotten into trouble for doing something wrong .I was just trying to do my best to help my mom , I know there are alot of people in the same situation and even worse situations,I feel very blessed that its so slow growing and she has no symptoms ,guess im just feeling overwhelmed my daughter has had eight surgeys on her face in the mandebular area involving the mouth ,doing lots of skin grafts ,now going for tissue expander in the neck to cover scared area for large congenital hairy nevus suspicious for melanoma also osteochondromas being watched over time for both my girls has these bone tumors,I take care of my mom and mentally handicap brother along with my own little family ,again im sorry to you both ,but thank you so much for responding I appreciate everything ,hope you all have a great day .
Reply # - December 6, 2012, 09:40 AM
It certainly wasn't my intention to make you feel immature. I assumed you didn't understand the first time around so I restated it with more bluntness and as I often do I try to use quotes from our faculty. Communication over the internet has it's limitations.
It's so common for people to not hear or understand what's being said. I've done the same thing enough to know I need to write down what D's onc says, to take a list of questions so I don't forget to ask, and to read what I've written or the doctors and members here have written over until I think I've gotten the meaning out of it. Even then I miss a lot.
Also it's so like us to want to do something about things It's the first thing I think of when there's a problem..."what do I do about it?" We want to take action. You're in an action mode you want to make sure everything is being done that needs to be done.
So if nothing else you know where we stand, we've made ourselves clear. You have a lot, too much for one person to care for. I hope you have help. If not ask those people that say, "what can I do" to do something specific like get go to the store, bring dinner, watch the crew while you go out and shop or take a breather. Make a list so you don't come up with a blank when you hear those words, be ready for them, they probably really want to do something. If not they'll go away. Not me, ;)
Reply # - December 6, 2012, 12:44 PM
Please don't worry about it. This temptation to intervene immediately is very common, so it never hurts to underscore the counterpoint that, if the cancer is slow-growing, it can be quite helpful to fight the instinct to engage when it's not necessarily needed or even helpful.
Reply # - December 6, 2012, 04:15 PM
THANK YOU BOTH VERY MUCH ,I JUST GOT IN THE MAIL RECENT CT ACTUALLY LITTLE DIFFERENT THAN WHAT HER DOC SAID PREVIOUS SCAN WAS 8-21-2012 THIS SCAN WAS 11-27-2012 MOST ARE UNCHANGED BUT THE LLL WAS 12MM NOW 14MM,RLL WAS 8MM UNCHANGED ,RUL WAS 5.5MM NOW IS 7MM ,RML WAS 7MM IS UNCHANGED ,THEY ARE CALLING THEM BILATERAL SOFT TISSUE DENSITY ,ALL OTHER MULTIPLE NODULES ARE STABLE AND UNCHANGED ,SO I GUESS ONLY TWO OF THEM ARE GROWING BUT I CANT FIGURE OUT THE VOLUME THING AND THE GROWTH RATE CALCULATER IS THERE ANY WAY YOU COULD CACULATE THAT FOR ME ?THANK YOU SO MUCH
Reply # - December 6, 2012, 08:58 PM
I'm not sure if that is even something you would try to calculate because the change of a few mm may be due to the cut of the images not real change in the nodule itself. (the post linked to below will explain that) On the other hand if there is growth it is still very slow and significant enough to watch until it becomes a problem. It just so very unlikely that any problems will occur before the next scan.
A volume calculation would take 2 more dimensions on all the dimensions given. (length x width x height most reports just give the largest of the 3.) If you really want the numbers you may want the radiologist to calculate them for you. But this really doesn't seem to be one of the "battles you need to pick". As I'm sure you know it's best to pick your battles or should I say it's important to use the med pros time wisely with requests that will make a difference. Hopefully that's one of the things we do, help people know when and what requests to make of their medical professionals.
Anyway here is a blog post that may explain the reason to not worry about the small changes that are being reported. http://cancergrace.org/lung/2011/08/09/limits-of-ct-scanning/
Reply # - December 6, 2012, 09:58 PM
Yes, the main point is that if you're focusing on these changes, that's less relevant than the question of how clinically significant the change is -- how much of the overall disease is changing, and over what time period. That is more of a judgment than a mathematical calculation.
But if you really want it, here's a link to a calculator of the volume of a sphere that you can use to evaluate the change over time:
Reply # - December 7, 2012, 04:30 PM
well i know overall the past eight years its took them this long to reach the size they are now ,so im just going to take it step by step and day by day ,i feel good in my heart about it ,god has always took care of her, so im going to leave it in his hands ,thank you both so much for your help .
Reply # - December 7, 2012, 04:33 PM
I think you have very good reason to be optimistic.
Reply # - August 2, 2013, 07:55 AM
well here i am again a year later still been doing cts ,since the lung biopsy was done in aug last year on one particular nodule in the lung that nodule is growing faster and the doctor thinks its mets rcc and said our only option was chemo pills (which are harsh to some peaple) to only extend her life bye maybe 12 ths or less, or to do nothing ,should i go to a lung specialist for another opinon ,i dont know what to do at this point this is so upsetting?
Reply # - August 2, 2013, 07:57 AM
all the nodules are soft tissue nodules ,on what i have read is a bad thing and probably cancer ,here 9 yrs after rcc was removed but yet was no where near the renal vein ,i dont know how this could have spread?
Reply # - August 2, 2013, 12:17 PM
Sharry, Hello. I'm so sorry these nodules continue to grow. The quick answer is it depends, pretty much the same applies as did before. It depends on how quickly they're growing and the dangers they present to your mom. If she's having symptoms then it may be time to think about treatment options.
However if it's still growing at the same indolent pace and not causing symptoms there's very possibly no need to start treatment even if she plans on treatment when the time comes.
As far as who to see, since it's rcc then she would continue to be treated for rcc by a medical oncologist and possibly an oncologist who specializes in rcc. If she has lung problems/symptoms she may need to see a pulmonologist, a doctor that tends to respiratory system problems, including the lungs but that person wouldn't treat cancer.
You asked before about how cancer metastasizes. It's possible for cancer to enter the blood supply no matter where it is. It may be easier to enter if the cancer is closer to a certain vein but that's not necessary. As is stated here all too often, "cancer can do anything".
I can imagine the difficult decisions y'all are having to make. This is possibly my biggest worry, balancing treatment with no treatment, balancing quality of life with anticancer drugs. This seems to be what it all comes down to doesn't it? On a personal note, at least for now and the past 4 years my husband's cancer has either been very well controlled with drugs and even on treatment break for the last year. So I feel like we are in a similar situation as your mom and you. For lung cancer that's very unusual and for us quite lucky. My husband will move forward with drugs and other treatment as slowly and lightly and only as needed to keep his cancer at bay. It will be a balancing act that I hope he can continue to play for for for....a long time.
I'll ask Dr. West if he has any new info for you.
All the very best to you and your family,
Reply # - August 2, 2013, 01:05 PM
forgot to mention the lung biopsy showed chronic inflamation ,no evidence of malignant cells,then after they biopsied it it got bigger ,my thinking is if she has inflamation already and just aggravated that nodule wouldnt it get inflamed and appear larger just from that ?
Reply # - August 2, 2013, 01:06 PM
and is still asymtomatic
Reply # - August 2, 2013, 01:10 PM
thank you janine so much ,god bless
Reply # - August 2, 2013, 09:57 PM
It sounds very much like these are slowly growing metastases from renal cell carcinoma. It's not clear if it's necessary to treat these nodules if they're asymptomatic, but I think the value of treatment is something to consider discussing with a specialist in kidney cancer.
Reply # - August 3, 2013, 07:55 AM
ok thank you foryour response ,it is much appreciated !