Follow Up

Portal Forums Lung/Thoracic Cancer SCLC Limited Disease Follow Up

This topic contains 18 replies, has 4 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 1 day, 1 hour ago.

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November 26, 2017 at 6:21 am  #1293563    

bobpaul152

Hi Jim,
I tried to reply on my previous thread but managed to keep getting a technical error when I tried to update it. Originally I was diagnosed through bronchial washing and no evidence at CT scan.
I completed my treatment in the summer and did feel much better, suggesting we were on the right path. Recently I have started to experience tiredness and symptoms that I had prior to diagnosis. I did have a CT scan that was clear, but nothing showed on CT at diagnosis. The doctors can’t do the bronchial washings this time, but have suggested that I could fund a PET scan if I am concerned. I have read everything and it is hard to see what a PET scan could offer when nothing is showing on CT. I know PETs are not a good idea for follow up in normal circumstances, but I do seem to have exceptional circumstances. I did find a report on line that looked like it was saying that PETs could offer more in certain scenarios

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://jnm.snmjournals.org/content/early/2016/12/15/jnumed.116.183905.full.pdf&ved=0ahUKEwjOg6yCrNzXAhUCAcAKHbIZCuQQFggrMAE&usg=AOvVaw1NvlAACc20ZqkR0ZY6NRoe

I can’t find anything to help me make up my mind, do you know of any situations where PET has been more beneficial than CT in identifying lung cancer? It seems such a rare situation that I am in that there is no guidance? The report I found did seem to suggest that a PET scan can find tumors that are not picked up by CT.
Thank you for all the information.

Bob P.

November 26, 2017 at 7:30 am  #1293564    
JimC Forum Moderator
JimC Forum Moderator

Hi Bob,

Welcome to GRACE. I’m sorry to hear that symptoms similar to those you experienced prior to diagnosis have returned. I think the first issue would be how specific those symptoms are. Although you are absolutely correct in bringing these symptoms to your oncologist’s attention, tiredness and many other symptoms can be caused by a variety of illnesses, so perhaps some blood work or other workup might be in order to rule out other causes. Your doctor would be in the best position to judge whether your symptoms specifically point to your lung cancer diagnosis.

The study you cite is interesting (so much so that I’m saving it for future reference), but perhaps not quite applicable to your case. That report consists of a retrospective analysis of the use of PET in cases of suspected paraneoplastic syndrome. In those situations, cancer is also suspected since the syndrome can be caused by the presence of cancer cells, though the symptoms are not directly caused by a tumor. Under those circumstances, a PET scan may reveal metabolic activity somewhere in the body and the location/origin of that cancer. In your situation, you have a lung cancer diagnosis, but no tumor has appeared on CT scans. It is quite unusual to have significant symptoms from a cancer that doesn’t appear on imaging, but cancer seems to be capable of anything.

A PET scan may reveal increased metabolic activity somewhere in the body, but the findings may not represent evidence of cancer, but rather infection or inflammation (either of which might be possible causes of your symptoms). If the results point to a location that is suspected to be cancer, the question becomes “what do you do about it?” If you previously had systemic treatment (chemotherapy, targeted therapy or immunotherapy), then you could take that route again, but treating something you can’t see very well on scans is difficult, since it’s hard to judge the effect of the therapy.

[continued]


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 26, 2017 at 7:43 am  #1293566    
JimC Forum Moderator
JimC Forum Moderator

[continued from previous post]

That would probably mean a follow-up PET to use as a comparison, but if you’re self-funding, the cost of PETs can add up quickly.

The bottom line is that there’s no way to know if a PET will lead to any more useful information than the CT, but when options are limited it might be worth a try. I wish there was a better answer for you,

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 26, 2017 at 8:06 am  #1293567    

bobpaul152

Hi Jim,
Thank you for replying so quickly with so much information. I agree that the study I looked at doesn’t cover my situation. I did speak to a large cancer center and they see a couple of cases a year of lung cancer not visible on CT, out of a total of 5 to 6 hundred. Once diagnosed they just follow the usual pathway, there is no set protocol for these cases.
What I did find interesting from the study was the number of malignancies picked up by PET after a negative CT. There does not seem to be many cases of malignancy after the negative PET. The untrained, like me, could read this as the PET being better for locating a hard to find tumor. I am thinking this through carefully, as I think committing to a PET could be setting me up for finding funding for a further follow up.
I will let you know the outcome.
Thank you again.

Bob P.

December 5, 2017 at 1:02 pm  #1293595    

bobpaul152

Well I had the follow up PET/CT. The doc was pleased with the result and I was very happy, he said it was a pretty clean report. I did take a copy of it and one item worries me a little. It says there is low grade take up in small symmetrical upper deep cervical lymph nodes e.g.left level 3/4 SUV 2.2 size 8mm.
I have looked at some websites and level 3/4 cervical nodes seem to be listed as lower ones, so I wonder if there is a typo? Also, there is no tracer take up in the thorax, so does this make the possibility of mets in the cervical nodes unlikely? I was so happy after the results, now a bit worried. Do these nodes show on chest ct?
Thank you for any information you can add.

December 5, 2017 at 6:01 pm  #1293596    
catdander forum moderator
catdander forum moderator

Hi Bob,

Congratulations on the excellent scan results! 8mm would show up on a CT. That size and level of uptake could easily be left over from an infection you may not have noticed or felt. It’s pretty typical for a person not to know he or she has had infections that the immune system takes care of and the lymph system eliminates, it’s what it does. I get that you may worry about it but it’s probably nothing.

Again…Congrats!
Janine

December 5, 2017 at 10:41 pm  #1293597    

bobpaul152

Hi Janine, and thank you!
I was trying to establish if there could be a typo with the cervical lymph nodes being classed as upper deep but also referred to as level 3/4. From what I can find, level 3/4 would be lower.
I am asking as I believe the lower nodes would be more susceptible to metastasis, although still pleased that the thorax shows no tracer uptake.

Also, I agree that 8mm would show on a CT, but would a standard chest CT show them, or would they be outside the field of view captured on a chest CT?
Thank you again,

Bob P.

December 6, 2017 at 12:07 pm  #1293598    
catdander forum moderator
catdander forum moderator

Gotcha. It’s very possible it’s a typo by the radiologist. Either your onc or the radiologist should be able to clear that up.

A PET/CT integrated system is the most typical way to get PET scans today and would give both PET and CT for the given area. So if there was PET of the neck then there would be CT of the same area. Likely you were given a scull base to mid thigh PET/CT. Otherwise it would be just the chest or just the head and neck or other specific area. So yes if the cervical nodes were covered in your PET it’s most likely a CT was taken as well. It’s good to note that the resolution on the CT wouldn’t be as high as a stand alone CT but I’d expect 8 mm to be plenty large enough to capture with the CT and most likely the picture with which the measurement was taken.

Janine

December 6, 2017 at 12:20 pm  #1293599    

bobpaul152

Thanks Janine, if I was to follow up at some stage, would a chest CT pick up a cervical node or are they too high in the body to be in the chest CT picture?

I would like to avoid another PET if possible as there was nothing worrying enough to go down that route, but I will be planned in to have a chest CT in the future and it would be reassurance if I knew the hadn’t enlarged.

Thank you again!

Bob P.

December 6, 2017 at 6:05 pm  #1293600    
catdander forum moderator
catdander forum moderator

Typically a chest CT and head and neck CT overlap a bit but probably wouldn’t pick up the higher of the level 3 cervical nodes. Talk to your onc about getting the cervical nodes scanned…or scrunch your shoulders up real high so the top of the lungs are up around the top of your neck. That’s kind of a joke but not entirely.

December 7, 2017 at 12:40 am  #1293601    

bobpaul152

Thanks Janine, I think I will try the scrunched up approach. I just can’t afford to keep self funding for scans. The worry about the low grade take up in the cervical nodes is a personal one and not one that the docs think significant, so there is no medical grounds on which to scan the neck.
One thing I got from the docs which I thought might interest you was an input from a well recognised and highly regarded radiologist in the field of lung cancer diagnosis. I won’t give her name here as it wouldn’t be fair when her communication was between her and my doc. But she does appear on many published reports on lung cancer programmes. I think my doc got worn down about my need to find the primary.
Her words (as verbatim as I recall) were:

We see a fair amount of SCLCs normally with adenopathy and difficult to see primary. We don’t always find the primary.

I think that this was interesting as I was led to believe that the primary was easy to see in SCLC hence my quest!

Thanks again for your help, I hope the scrunched up technique works!

Bob P.

December 7, 2017 at 7:39 am  #1293602    
JimC Forum Moderator
JimC Forum Moderator

Hi Bob,

Sounds like the statements from the large cancer center and the radiologist are pretty similar, since the radiologist sees a fair number of cases where the primary is difficult to see initially, but only some are never found. I wouldn’t be surprised if the percentages are fairly similar between the two practices.

In any event, great scan results, and we look forward to more good-news updates in the future.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

December 7, 2017 at 11:58 pm  #1293604    

bobpaul152

Hi Jim, I think the key thing my doc and radiologist was trying to get across is that most primaries are never found in sclc and that is contrary to what many people think. The tendency is to assume it is only a few that are never found.
This document may help explain it:

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://pubs.rsna.org/doi/pdf/10.1148/radiographics.17.2.9084079&ved=0ahUKEwj7mJiF9vnXAhVqLsAKHd86BiIQFggnMAA&usg=AOvVaw38B0vOPvDsDAkahzFlvySj

Where it talks about sclc on page 382, it says

Identification of the primary tumor is uncommon

I just thought sharing this might help dispel some of the myths and misinformation out there.

Thank you for you help,

Bob P.

December 8, 2017 at 8:28 pm  #1293608    
Dr West
Dr West

Bob,

I think that is either a misinterpretation or an erroneous statement. I’d also highlight that the article you’re referring to is essentially ancient by oncology and imaging standards.

Small cell lung cancer usually has very substantial visible disease. It is sometimes the case that there is so much central disease that involves the mediastinum and the hilar lymph nodes that they are not uncommonly confluent with a medial primary cancer, and it is difficult or impossible to distinguish a separate primary cancer. However, we just presume that it’s a medial cancer that is indistinguishable from the central disease involving the lymph nodes.

I would say that nearly all oncologists and just about every lung cancer expert on the planet would strongly disagree with the idea that there is rarely an identifiable primary tumor in patients with small cell lung cancer. Most would be incredulous about it. I understand that the statement appears in a journal article, but there have been thousands of journal articles about small cell lung cancer over the past 25 years, and I think very few have made a similar statement.

So to clarify, I think it’s reasonable to say that it’s not rare to be unable to distinguish a separate primary tumor some distance away from the bulky central disease in many patients, but that’s just because small cell is often characterized by bulky, central disease that heaps onto itself.

Good luck.

-Dr. West

December 11, 2017 at 3:10 am  #1293623    

bobpaul152

Dear Jim, Janine and Dr West,

I’d like to thank you all for your replies to my continual questions, your responses have been so helpful to me though. Over the past couple of days I have done some thinking that may help others, so I’d like to share it.
During my diagnosis, I had a wonderful team who just filled me with confidence. I thought that was the complex part and the subsequent treatment would be routine. I did not appreciate that the oncologist conducting the treatment had an equally any maybe more complex job to do, to ensure optimum care. I do not mind admitting that I chose my oncologist more for convenience than any other criteria. I realise now that he does not fit my individual needs and perhaps that is what gives me some anxiety. I do not question his knowledge, skill or competence but he isn’t what I need and I expect I am not the type of patient that fits his style. I am currently looking to change doctor.
I also think that I may have interpreted the mail from the radiologist incorrectly. When she talked about the difficulty in finding the primary tumor, it could well have been due to accompanying bulky disease. She was a site lead investigator on the ACRIN lung cancer screening program, so her credentials are superb but my interpretation wrong as the context was probably more around screening.
As well as learning that the doctor-patient dynamic is important, I have also realised that the internet can be outdated and difficult to navigate through when you are anxious and desperate to find an answer. There is so much out there, that you could find whatever answer you want, if you look hard enough.
Thanks to experts like yourselves, I feel in a better place.

Bob P.

December 17, 2017 at 7:28 am  #1293641    

bobpaul152

I met with my Doctor and had a frank talk, for some reason he said he liked me as a patient as I was always challenging him! I am still looking at parting from him but he asked me to reconsider. He still has a different view on the seeing the primary of sclc on CT. He thinks it is well documented that the primary is not found and that is what the rads tell him. He gave me an upon to date reference https://www.google.co.uk/url?sa=t&source=web&rct=j&url=https://www.ajronline.org/doi/pdf/10.2214/AJR.12.9043&ved=2ahUKEwj2l4mDq5HYAhUsBcAKHTT7DJEQFjABegQICRAB&usg=AOvVaw3gEaNMayqESjZeoU9eTJFf
that might be more helpful. I must admit it does say Small cell lung cancer is the second most
common lung cancer arising in the central
bronchi [12]. Unlike SCC, the primary airway
mass is frequently imperceptible on crosssectional imaging [10]. The most common
imaging finding is extensive hilar or medias-
tinal lymphadenopathy (Fig. 4) secondary to
early metastasis [13]. Bronchial obstruction is
much less common with small cell lung can-
cer than with SCC

I just wonder if radiologists have their own spin on this?

My doctor seems to be well connected with radiologists so I wonder if that is why he tends to align with them??
Thanks again for this valuable site.

Bob P.

December 17, 2017 at 8:33 am  #1293642    
JimC Forum Moderator
JimC Forum Moderator

Hi Bob,

Thanks to you (and your doctor) for providing that link, which completely clears up the confusion. From the previous posts, it seemed that your doctor and radiologist were saying that the primary tumor in all SCLC cases is rarely imaged. But the linked article makes it clear that they were referring only to SCLC in the central bronchi. As stated in the article, cases of tumor or tumorlike cancers in the central bronchi represent fewer than 0.4% of tumors in the body, and SCLC is the second most frequent cause. That means we are talking about a very small subset of all of the cases of SCLC, while most SCLC cases involve lung masses that are easily imaged.

This is one of those rare cases in which two seemingly conflicting opinions both prove to be correct.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

December 17, 2017 at 8:37 am  #1293643    

bobpaul152

It just goes to show how a little knowledge in the wrong hands (mine) can be dangerous. I am not sure if any other doctor would be prepared to take me on.
Thank you again
Bob P.

December 17, 2017 at 9:10 am  #1293644    
JimC Forum Moderator
JimC Forum Moderator

Hi Bob,

Please don’t criticize yourself too much, Bob. You’re doing a great job learning as much as you can about your condition, and these days a greater number of doctors are open to discussing the finer points of diagnosis and treatment with well-informed patients who get their information from authoritative sources.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

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