Bad CT Scan

[ams5796]

I think everyone has given you some good advice here. I would most definitely consider a second opinion at a major cancer center. I've had a couple of go-rounds with lung mets. I had a scan last week and it looks like I may be dealing with them for a third (fourth?) time. The first time a couple of oncologists thought I had a "snowstorm" of mets across both lungs. I was put on Xeloda for eight months to see what they (the mets) were going to do. After the eight months Dr. Kemeny at MSK decided it was time to go in and take a couple out to see what we were actually dealing with since they had neither grown nor shrunk from the Xeloda. I had VATS and the pathology came back that one of the two was a lung met (the other was just a "thing"), but the interesting part was that they discovered that I had a MAC infection (the snowstorm) which is a cousin to TB. I actually rejoiced with that news. I'll take an infection over cancer anytime. Anyway, we decided to not treat the infection and it has been dormant since then. They went back in shortly thereafter and did another VATS and took out another one that had lit up on the PetScan. That was a met, but I remained NED for a couple more years until another one reared its ugly head. This time the surgeon thought it wasn't in a great spot for VATS so I had SBRT which was fine, but I'd rather have VATS. VATS is very easy with a pretty easy recovery. With SBRT it's hard to know if the radiation really got rid of it. There's no pathology. It took many scans for my oncologist to be satisfied with the result. There is a tremendous amount of scar tissue left behind making it very difficult to get a good look at the area in question.

So, as you can see, there are options. You need a good team to come up with a plan for you, Jim.

Ann

[teri3]

Hi Jim!

I'm in the same boat as you. I had my sigmoid removed in 11/14 did 11 rounds of Folfox and on my first recheck scan I showed two .8 mm nodules one bottom right, one bottom left. My onc hasn't that encouraging either. I had a 2nd opinion at the James at OSU where they agreed with my onc and wanted me to do Folfiri + Avistan, they said the mets were to small to consider for surgery. So I started the chemo August 2nd but I'm still keeping in mind some form of removal if need be. Removal seems to be the best choice for a cure. My oncologist just doesn't seem to think removal is an opinion but I will get another 2nd opinion if they aren't cleared by the chemo. Good luck and keep me updated on how thinks go with you.
Hugs,
Teri

[dianetavegia]

Cavitating in medicine implies: Formation of a cavity, as in the lung in tuberculosis or with development of a bacterial lung abscess.

This could be a fungus and the enlarged lymph node would be your body fighting the infection/ fungus. I'd get to a lung specialist right away. I also saw pneumonia as a cause of cavity type nodules in the lungs.

Lung abscess is a type of liquefactive necrosis of the pulmonary tissue and formation of cavities (more than 2 cm) containing necrotic debris or fluid caused by microbial infection. This pus-filled cavity is often caused by aspiration, which may occur during altered consciousness.

Don't give up yet! This could be something totally non cancer related!

Best of luck,
Diane

[stu]

Hi,
Its a blow for sure but there are so many options . I think most people with a possible spread get the pessimistic speech as they don't know for sure how your disease will behave. With time we have learned to accept the speech as part of their medical care but not to let it define your own outcomes. I came here last year as the lung was a new location for my mum . I got such good advise from people like ams and it directed mum's Couse for sure. It turned out to be the easiest surgery to date. We insist on specialist reviews.
Its seven years since my mum's stage 4 diagnosis. Today she could not join my sister and I for coffee. We popped in to find her wallpapering. She still has a fantastic life.
Chin up and go get them.

Ams, I am sorry you have more to deal with , I hope you have a plan worked out soon.

Kind regards
Stu

[JDMNYC]

I'm in the same boat as you. I had my sigmoid removed in 11/14 did 11 rounds of Folfox and on my first recheck scan I showed two .8 mm nodules one bottom right, one bottom left. My onc hasn't that encouraging either. I had a 2nd opinion at the James at OSU where they agreed with my onc and wanted me to do Folfiri + Avistan, they said the mets were to small to consider for surgery. So I started the chemo August 2nd but I'm still keeping in mind some form of removal if need be. Removal seems to be the best choice for a cure. My oncologist just doesn't seem to think removal is an opinion but I will get another 2nd opinion if they aren't cleared by the chemo. Good luck and keep me updated on how thinks go with you.
Hugs,
Teri

Hi Teri -

Thanks, and I'm sorry to hear that we are looking at the same thing. I am going to get a 2nd opinion, and then go from there. I would feel better with them removed, but failing that, I'd at least like to get some more chemo going.

I will definitely let you know how I am going - you please do the same. Good luck to you.

Jim

[JDMNYC]

Hi,
Its a blow for sure but there are so many options . I think most people with a possible spread get the pessimistic speech as they don't know for sure how your disease will behave. With time we have learned to accept the speech as part of their medical care but not to let it define your own outcomes. I came here last year as the lung was a new location for my mum . I got such good advise from people like ams and it directed mum's Couse for sure. It turned out to be the easiest surgery to date. We insist on specialist reviews.
Its seven years since my mum's stage 4 diagnosis. Today she could not join my sister and I for coffee. We popped in to find her wallpapering. She still has a fantastic life.
Chin up and go get them.

Stu! Thank you! I'd love to be wallpapering in 2023 - that is enormously encouraging! Thank you!

Jim

[JDMNYC]

Cavitating in medicine implies: Formation of a cavity, as in the lung in tuberculosis or with development of a bacterial lung abscess.

This could be a fungus and the enlarged lymph node would be your body fighting the infection/ fungus. I'd get to a lung specialist right away. I also saw pneumonia as a cause of cavity type nodules in the lungs.

Lung abscess is a type of liquefactive necrosis of the pulmonary tissue and formation of cavities (more than 2 cm) containing necrotic debris or fluid caused by microbial infection. This pus-filled cavity is often caused by aspiration, which may occur during altered consciousness.

Don't give up yet! This could be something totally non cancer related!

Best of luck,
Diane

Thank you Diane - I do have that in mind. I am setting up a biopsy now to see if we can nail down exactly what we are looking at. If it is METS, then I will look for a plan, meet with my colorectal surgeon, and get some review with a thoracic surgeon, etc. I am at MSK, so I am thinking about having a chat w/ MD Anderson as well. But first want to see what exactly we are dealing with. I find your signature very encouraging Thank you.

Jim

[JDMNYC]

I think everyone has given you some good advice here. I would most definitely consider a second opinion at a major cancer center. I've had a couple of go-rounds with lung mets. I had a scan last week and it looks like I may be dealing with them for a third (fourth?) time. The first time a couple of oncologists thought I had a "snowstorm" of mets across both lungs. I was put on Xeloda for eight months to see what they (the mets) were going to do. After the eight months Dr. Kemeny at MSK decided it was time to go in and take a couple out to see what we were actually dealing with since they had neither grown nor shrunk from the Xeloda. I had VATS and the pathology came back that one of the two was a lung met (the other was just a "thing"), but the interesting part was that they discovered that I had a MAC infection (the snowstorm) which is a cousin to TB. I actually rejoiced with that news. I'll take an infection over cancer anytime. Anyway, we decided to not treat the infection and it has been dormant since then. They went back in shortly thereafter and did another VATS and took out another one that had lit up on the PetScan. That was a met, but I remained NED for a couple more years until another one reared its ugly head. This time the surgeon thought it wasn't in a great spot for VATS so I had SBRT which was fine, but I'd rather have VATS. VATS is very easy with a pretty easy recovery. With SBRT it's hard to know if the radiation really got rid of it. There's no pathology. It took many scans for my oncologist to be satisfied with the result. There is a tremendous amount of scar tissue left behind making it very difficult to get a good look at the area in question.

So, as you can see, there are options. You need a good team to come up with a plan for you, Jim.

Ann

Hi Ann -

Thank you. I am at MSK right now, and am thinking of checking w/ MD Anderson too. First, of course, biopsy. Then meeting with colorectal surgeon, to get views and referral to thoracic/lung person. I'm wondering if MSK would permit changing onc to someone a little less willing to call it a day so early in the game. I may have to let these grow a bit to see if there is a surgical option, but I think I want to get back on Xeloda anyway. I'm very sorry to hear about your scan - I hope that you are able to put together an approach works for you. I think I have some sense of how you feel right now, and it is kind of you to take the time to help me while you are addressing it too - I am grateful. I will let you know what biopsy shows - say a prayer for a "thing" and I'll do the same for you

Jim

[BrownBagger]

I know the feeling. When my first lung node was diagnosed, I figured I was not long for this world. That was about 6 years ago. I've since regained some hope that if I hold out long enough, there will be new treatments and procedures that will allow us to kick the can down the road while they figure out a cure. You never know, but it's looking promising.

I would echo what my good friend and Lung Thang Gang member Ann said. Get a good team with a good plan and do what they say. I owe a huge debt of gratitude to my doctors, Kemeny (onc), Huang (thoracic surgeon) and Solomon (RFA). Through various chemo prescriptions, timely surgery and ablation, we've managed to keep my overall level of disease quite low and manageable, according to Dr. Kemeny. The trick is keeping it contained, and so far, they've done a good job of that.

I can't stress enough the value in being treated at a place like Sloan-Kettering with the top docs in the world. I recently had a tumor in my bronchial cavity discovered during a CT scan. Two days later, I was in surgery getting it removed. That's the kind of response you want, not "the guy who does that is on vacation for two weeks, so we'll have to wait." There's a huge advantage in having doctors who specialize in precisely what you've got, and have the knowledge and experience to deal with it effectively.

Finally, my philosophy has always been to my doctors worry about treating my disease. I worry about taking good care of my health--both mental and physical. That's a full time job.

Good luck.

[JDMNYC]

I know the feeling. When my first lung node was diagnosed, I figured I was not long for this world. That was about 6 years ago. I've since regained some hope that if I hold out long enough, there will be new treatments and procedures that will allow us to kick the can down the road while they figure out a cure. You never know, but it's looking promising.

I would echo what my good friend and Lung Thang Gang member Ann said. Get a good team with a good plan and do what they say. I owe a huge debt of gratitude to my doctors, Kemeny (onc), Huang (thoracic surgeon) and Solomon (RFA). Through various chemo prescriptions, timely surgery and ablation, we've managed to keep my overall level of disease quite low and manageable, according to Dr. Kemeny. The trick is keeping it contained, and so far, they've done a good job of that.

I can't stress enough the value in being treated at a place like Sloan-Kettering with the top docs in the world. I recently had a tumor in my bronchial cavity discovered during a CT scan. Two days later, I was in surgery getting it removed. That's the kind of response you want, not "the guy who does that is on vacation for two weeks, so we'll have to wait." There's a huge advantage in having doctors who specialize in precisely what you've got, and have the knowledge and experience to deal with it effectively.

Finally, my philosophy has always been to my doctors worry about treating my disease. I worry about taking good care of my health--both mental and physical. That's a full time job.

Good luck.

Thanks Eric - I am so grateful for this community - not six months ago I was sure my only worry now was whether I'd need to do enemas or take Imodium. How I wish for the good old problems. I am at MSK, have just been reassigned to Martin Weiser (my colorectal surgeon, Larissa Temple, is leaving for parts unknown), and will know more after the biopsy. I am a little concerned at the Onc response - essentially telling me that no treatment at this point is intended to cure and what's the rush to get more chemo - and if I had been willing to wait three months for another CT scan instead of doing a prompt biopsy, I think she'd have let me. I mean, this is my first surveillance scan. My LAR was only a year ago.

I'm going to try to get with Weiser and then see about putting together the thoracic and RFA pieces. Maybe a different Onc would be a better fit for me at this point. I have your theory - hang on, at the minimum try not to get worse, and pray for a cure. The world is changing too fast to throw in the towel - who knows what will be out there a few years from now?

Thank you again.

Jim

[mypinkheaven]

I am a little concerned at the Onc response - essentially telling me that no treatment at this point is intended to cure and what's the rush to get more chemo - and if I had been willing to wait three months for another CT scan instead of doing a prompt biopsy, I think she'd have let me.

My oncologist's response was essentially the same as yours - wait on starting chemo. I have several "thangs" in both lungs that are all under 1cm. I've been told that they are too small for a biopsy or PET scan. This is the second oncologist who is sure these are mets due to my history of the colon cancer metastasizing to the uterus. The spots showed up after I had adjuvant Xeloda after the hysterectomy. He is proposing Irinotecan and Avastin when the mets grow. He feels the mets are too scattered for VATS, although he did mention SBRT.

I questioned his decision of waiting on more CT scans before starting chemo and this is his reply:

"Given the minimal change on the scan, I see no disadvantage to delaying chemotherapy.
The reasons for chemo are 1. To improve your quality of life and 2. To prolong your survival.
Currently you have no symptoms from the cancer in the lungs since they are very small. So chemo certainly will not improve your quality of life at this time. In my opinion , we don't lose anything by delaying treatment until the mets are larger.
The advantage is that we delay the side effects of treatment by waiting, without compromising the chance of the cancer responding to therapy.
There is no need for needle biopsy or PET scan.
I hope this helps to clarify my recommendation. "

I'll have another CT scan towards the end of October. I'm waiting for future CT scan results before I push to see a thoracic surgeon or interventional radiologist.

Is this oncologist throwing in the towel? Or being realistic?

[JDMNYC]

I am a little concerned at the Onc response - essentially telling me that no treatment at this point is intended to cure and what's the rush to get more chemo - and if I had been willing to wait three months for another CT scan instead of doing a prompt biopsy, I think she'd have let me.

My oncologist's response was essentially the same as yours - wait on starting chemo. I have several "thangs" in both lungs that are all under 1cm. I've been told that they are too small for a biopsy or PET scan. This is the second oncologist who is sure these are mets due to my history of the colon cancer metastasizing to the uterus. The spots showed up after I had adjuvant Xeloda after the hysterectomy. He is proposing Irinotecan and Avastin when the mets grow. He feels the mets are too scattered for VATS, although he did mention SBRT.

I questioned his decision of waiting on more CT scans before starting chemo and this is his reply:

"Given the minimal change on the scan, I see no disadvantage to delaying chemotherapy.
The reasons for chemo are 1. To improve your quality of life and 2. To prolong your survival.
Currently you have no symptoms from the cancer in the lungs since they are very small. So chemo certainly will not improve your quality of life at this time. In my opinion , we don't lose anything by delaying treatment until the mets are larger.
The advantage is that we delay the side effects of treatment by waiting, without compromising the chance of the cancer responding to therapy.
There is no need for needle biopsy or PET scan.
I hope this helps to clarify my recommendation. "

I'll have another CT scan towards the end of October. I'm waiting for future CT scan results before I push to see a thoracic surgeon or interventional radiologist.

Is this oncologist throwing in the towel? Or being realistic?

That's a fair question, I suppose. I was put off by the entire approach. We had a decent, not great, rapport during my initial chemo and chemo/radiation in January - June 2015. When my CEA began to rise in April 2016, I expressed concern and was told not to worry, it was normal fluctuation. When I went in yesterday for what I expected to be a routine visit after the first annual surveillance scan, she asked if I wanted to get my wife on the phone and offered a box of tissues (literally). When she said that this report was bad news, I said Ok, so, what do we do next - and there was no specific response other than wait. The emphasis was on ensuring that I understand that that no treatment is intended to be curative. There was no discussion of specific drugs (e.g., Irinotecan, Avastin) and and no discussion of VATS/SBRT or any other removal option). I wanted to hear about how we are going to keep me alive as long as possible in the hope that something may come along, but did not hear that. Could be that your Onc is just a better communicator than mine.

I do think that the answer your Onc gave is likely consistent with what mine would say, but as I was sitting there, I was thinking of the stories I have read here about people with METS that later are NED, and thinking I don't see how we get to NED without doing anything. Given that I'm not the house here, I was looking for someone that wants to fight the odds, not play them, if that makes sense.

[ams5796]

Is this oncologist throwing in the towel? Or being realistic?

I think it is a realistic and common strategy to "wait and see" with lung mets. When my lung mets were first discovered way back when, my local oncologist's plan was to wait and see, have a few scans and see what happens. I got a little antsy with that approach and ran off to NYC to meet with Dr. Kemeny. She was appalled with the idea of not being on chemo and said "mets can cause mets" (that still may be debatable even though it was Dr. Kemeny who said it). She immediately put me on Xeloda which I stayed on for the next eight months. I'm honestly not sure if that was necessary. My local oncologist is a big believer in keeping the chemo options available for when I'll really need them.

Ann

[mypinkheaven]

Is this oncologist throwing in the towel? Or being realistic?

That's a fair question, I suppose. I was put off by the entire approach. We had a decent, not great, rapport during my initial chemo and chemo/radiation in January - June 2015. When my CEA began to rise in April 2016, I expressed concern and was told not to worry, it was normal fluctuation. When I went in yesterday for what I expected to be a routine visit after the first annual surveillance scan, she asked if I wanted to get my wife on the phone and offered a box of tissues (literally). When she said that this report was bad news, I said Ok, so, what do we do next - and there was no specific response other than wait. The emphasis was on ensuring that I understand that that no treatment is intended to be curative. There was no discussion of specific drugs (e.g., Irinotecan, Avastin) and and no discussion of VATS/SBRT or any other removal option). I wanted to hear about how we are going to keep me alive as long as possible in the hope that something may come along, but did not hear that. Could be that your Onc is just a better communicator than mine.

I do think that the answer your Onc gave is likely consistent with what mine would say, but as I was sitting there, I was thinking of the stories I have read here about people with METS that later are NED, and thinking I don't see how we get to NED without doing anything. Given that I'm not the house here, I was looking for someone that wants to fight the odds, not play them, if that makes sense.

I was wondering if my oncologist was throwing in the towel for me. But, I certainly did not get that impression - he's having me tested for KRAS which indicates to me that he's thinking of the future if Irinotecan doesn't work - and he sure didn't offer me a box of tissues!

Maybe a different oncologist would be a better fit for you at this time is an understatement. This whole process is hard enough without having to walk out of the exam room feeling like shite because your oncologist is a poor communicator!

Sally

[JDMNYC]

I think it is a realistic and common strategy to "wait and see" with lung mets. When my lung mets were first discovered way back when, my local oncologist's plan was to wait and see, have a few scans and see what happens. I got a little antsy with that approach and ran off to NYC to meet with Dr. Kemeny. She was appalled with the idea of not being on chemo and said "mets can cause mets" (that still may be debatable even though it was Dr. Kemeny who said it). She immediately put me on Xeloda which I stayed on for the next eight months. I'm honestly not sure if that was necessary. My local oncologist is a big believer in keeping the chemo options available for when I'll really need it.

Ann

Thanks Ann - that's interesting. I have been reading that it is very hard to change oncologists at MSK, so I'm not sure how to play it here. And, obviously, I don't know enough to know if mets can cause mets (although I have to say it makes sense to me). How was the Xeloda? I only took it during chemo/radiation, and didn't find it that bad.

Jim