Good morning everyone. Thank you for being here. Just a couple of questions
My first and only PET came back with zero uptake on two liver lesions(great) the elisions have never changed size on ct scans. Onc tells me they may never have been cancer or my chemo took care of the cancer. His point, there isn't any active cancer there now. Does that sound right based on one pet scan?
I am considering radiation to one lung tumor which has a pet max SUV of 3.0. I am afraid because that spot never changed in size during my chemo. The reports indicate it is pushing on the airway. I am thinking since it sort of looks like active cancer, I should nuke it. It is Small 1cm by 1cm. Just kind of looking to see if the approach sounds right.
I have been dx as stage 4 because of 1 lung spot, the liver(maybe, maybe not)' and a definite tumor in leg muscle which I am undergoing radiation treatment.
Thanks in advance for any insight.
Sat, 01/26/2013 - 10:30
Hi Bill, I hope you are feeling alright. I can't quite make out the time line in your signature. More info from you may not give the doctors anything extra with which to comment in this particular question but it can give a better context for future inquiries.
Your question is a very common one. Most people have the urge to get rid of as much cancer as they can. Though for most people with metastatic lung cancer it doesn't add time to survival and could diminish the amount of radiation one may get for times when radiation could be used for pain management.
With that said there are times it may be beneficial if there is one or 2 or? mets call oligometastatic disease and has been found when the met is to the brain, adrenals, or the same lung.
Here is a very good start to that conversation of why this may or may not be a good idea.
Please let us know your thoughts and questions after reading/listening to this. Don't miss the additional informative links at the end of the page.
Sat, 01/26/2013 - 12:01
Janine, thank you for the links. Very interesting and right on target to my question. I will update my information per your comment.
It goes something like this: the only indications I have are the spot on lung, the two liver leisions which may or may not ever have been active cancer and this tumor in my hamstring. My completed chemo cycle did not change any sizes anywhere(maybe that's good, maybe it didn't do a thing). Unfortunately, no PET scan was do e prior to chemo. The dx was based solely on an open biopsy of the leg.
So at this point, I have the lung being untreated. My leg is being radiated now, I have 2 treatments remaining. Yes, doing nothing is an option but given the 3.0 uptake in the pet on my lung, that is almost spooky. I guess I need to balance the desire of being aggressive with the possible lung tumor vs saving some ammunition for later if things progress. I don't relish the idea of being maxed out on lifelong radiation level.
My medical onc wants me to start docetaxel as a second line or maintenance approach but quite honestly, I had such a difficult time with my 4 rounds of carbo/taxol and cetuximab treatments that I cannot find the courage to continue any form of chemotherapy given how well I feel at the moment. I won't rule it out for the future but right now, I can't find the logic in what I am sure will be a deterioted quality of life. Additionally, I would like to save that for a point in time where I have no options.
Thanks again, just being able to qualify my feelings and thoughts help a great deal as I prepare for meeting both radiologist and medical oncologist on Monday to tell them what I want. (To be cancer free is what I want! But I heard somewhere, you can't always get what you want)
The links provided me with enough information to be able to ask several important questions which I would have never thought about on my own. Your input and patience is much appreciated.
Sat, 01/26/2013 - 13:32
Thanks, I'm glad you've found the links helpful.
I know you don't have a previous pet to go by but 3 is a pretty low suv that means there is not a lot of cell proliferation. I wonder if doing nothing, like you said, for 3 months until your next scan is an option.
Try these 2 links.
I think your about done with 1st line treatment ? So this may give you an idea of what some of the more standard type options most oncologists give, and have been researched to unmercifully for proof of efficacy,
You might like this one because it purports less treatment is more in some cases. I know finding and keeping a balance is always in my mind but with treatment decisions it takes time watching what the cancer does.
Sat, 01/26/2013 - 13:58
This is FUN, just sat down after my treadmill "walk" and there you are! Yes, I have seen that link.
Yes, I am finished with first line treatment and very happy to be done with THAT.
While I was walking, I came to the following decision:
Do nothing except finish my radiation treatment on the leg and pray it is effective
Schedule follow up scans
Hope and pray my scans are clean
Take my wife on a well deserved vacation and try to figure out how to stop thinking about cancer.
Honestly, in summary, since my diagnosis there has been little if any change to anything in my body (other than I finally found the motivation to stop my stupid smoking habit). I feel fortunate. My good status might be from a very effective first line chemo response or from something entirely different. There seems to be no way to tell.
Jumping in too early to a local treatment for a systemic cancer seems counter productive.
I am guessing this isn't a really fast moving cancer as it has been 4 months of nothing much changing. So waiting a bit for additional scans and solid evidence of progression may be the right approach.
I will see on Monday how my doctors feel about my decision
If anyone thinks I am missing something here, please, please let me know.
Only remaining question I have is 3 month between scans the correct interval? And should scans include the brain as well? I assume ct lung, pelvis, and leg. MRI for head. Do they normally include pet in recurring scan as well?
Sat, 01/26/2013 - 14:09
Wait, I fibbed! I had not seen the post from dr west on jan 16. That thing is brilliant!
Everybody needs to read that one!
Sat, 01/26/2013 - 16:13
The only thing I'd want to add and that's because I've led you through some posts is your doctors know what's going on best and at best your doctor uses your input including your desire to catch your breath after chemo and take your wife on vacation to make a collective decision.
3 months is the norm on followup and it's usually just a CT and not a brain MRI or a pet. Usually it's the chest that's the most important place to keep a watch and otherwise followup on symptoms as needed.
Sun, 01/27/2013 - 16:26
Bill, this is lung cancer right? I've never heard of the leg spread before and they did biopsy this correct? If any tumor is pressing on something and causing symptoms such as SOB or pain, they'd radiate to relieve those symptoms. You don't say if you're having any symptoms from the lung tumor? What type of LC do you have? Take care, Judy
Sun, 01/27/2013 - 17:04
It is a little different to be in the leg, so I am told. I had an open biopsy on the leg which apparently indicated a lung origin. My chest x-ray prior to biopsy found a lung spot. The pathology report stated squamous cell on leg. Ct showed lesions on liver as well. I see how they made their dx.
So, I think assumptions have been made.
My pet scan showed nothing -totally cold/dark on liver so my radiologist(treating leg) suggested maybe I do the lung too....
I can't say I have symptoms for sure. I used to smoke and have emphysema but since my diagnosis, it seems a little harder to breath but that really could be just in my head, you know?
The pet scan with an SUV max of 3 sort of makes me feel I have cancer in lung and it somehow found its way to leg but honestly, I have no hard evidence to prove it.
Thus my dilemma.
At the end of the day, the only thing I do know is I do not like chemo at all. I mean maybe the chemo killed my liver of cancer or more likely it was never cancer there but the treatment was the hardest thing I have ever done
Thanks you for asking.
Sun, 01/27/2013 - 18:53
There really are a lot of assumptions like that made in lung cancer. Maybe other cancers as well. I know neoplasms (cancer tumors) have a look that can be different than other things but like you said it could be that it wasn't cancer to begin with. This type of questioning comes up a lot.
You can't biopsy everything that maybe cancer. Especially when so often even a CT guided biopsy comes up without any cancer cells when in actuality the lesion is cancerous. The needle just misses it.
For example my husband has had 3 CT guided core needle biopsies and one VATS biopsy none came up with any cancer cells but out of the 4 attempts 3 were to the primary tumor that an open thoracotomy found. I find myself wondering if the mets were mets. I know it's silly wishful thinking but I will admit it once here.
Let us know what questions remain, use our search (you may need to log off depending on browser) and continue doing well.
Sun, 01/27/2013 - 19:38
Sorry I missed this thread until now. I'm glad my post from Jan 16th was helpful. I think it's something many people -- including docs, patients, and caregivers -- should consider far more in making treatment decisions.
The tissue diagnosis of the leg metastasis really clarifies it -- that's the definitive test. Yes, it's an uncommon pattern of spread, but we see weird things from cancer all the time, so it's definitely believable. Unfortunately, I'd say that it's really a systemic process, as you've already concluded. I don't think yours is a situation in which I'd be treating it with local therapy to every spot of detectable disease in hopes of killing every last cancer cell, since I don't think that'd be possible.
I really do think your conclusion of not using local therapy until it's clearly needed makes sense. As Janine noted, an SUV of 3 is not particularly high. Also, 3 months is a reasonable interval to be off of treatment, but I really favor a shorter interval of 6-8 weeks. I think 3 months puts the odds a little too high that someone could be progressing at a clinically significant pace for a month or more without any treatment being initiated.
Repeat head imaging in the absence of neurologic symptoms isn't the current standard and isn't something I routinely do in surveillance for people who don't have known brain metastases.
Good luck. I hope you take and enjoy that vacation.
Mon, 01/28/2013 - 03:53
Thanks dr west.
It isn't very pretty and I cannot bring my self to the second cycle of chemotherapy. I have been off the first line chemo for a month as of today. (Not sure if the radiation I am undergoing for my leg qualifies as vacation!)
I am sure I am not the only one around trying to avoid restarting chemo. I will post after my meetings this morning.
All of this input is more valuable than you may know. Thanks again