Hello, I’m new to GRACE. Jim, I’m so glad that you’re a cancer survivor, and thanks for your great work on this site.
My sister, 63, pretty much a lifelong non-smoker, has just been diagnosed with lung cancer - T2a N0 M0 (I think bronchial) adenocarcinoma with lepidic pattern of growth left lower lobe.
She is reasonably fit and well, though very thin. It was also found she has right middle lobe bronchiectasis.
She had initial CT 5/20/14 and second CT 8/5/14 with biopsy. The tumour hadn’t changed in that time.
It’s been recommended that she have surgery to remove the entire left lower lobe without delay. If she has this done my sister would like to have minimally invasive, video-guided keyhole surgery. She has been told that once opened up, it is never 100% certain what will be found.
My sister is obviously scared but she is reluctant to be rushed into anything and is looking at alternative therapies.
I am worried that she should not delay at all and risk allowing the cancer to progress.
I have also heard that chemotherapy prior to surgery can increase chances of a successful outcome. But would that apply to the cancer my sister has? Would it decrease the chance of further tumours forming?
Any thoughts and information would be very greatly appreciated.
Reply # - September 9, 2014, 10:09 AM
Welcome to GRACE. Thank you for your kind words. I'm not actually a cancer survivor, having lost my wife to lung cancer in 2011, but I guess I'm a survivor of some sort (see the link in my signature below).
I'm sorry to hear of your sister's diagnosis. From what you've written, it sounds as though her doctors believe that her cancer is what has traditionally been called BAC (bronchioloalveolar carcinoma), but is slowly being re-labeled lepidic predominant adenocarcinoma (LPA). One of the features of BAC is that it can be very slow-growing, and the fact that your sister's tumor did not change over a two and a half month period may indicate an indolent process.
In such cases, it is easy to over treat, as Dr. West described in this post: http://cancergrace.org/lung/tag/lepidic-predominant-adenocarcinoma/ If you apply his algorithm to your sister's situation, there is radiographic evidence of slow growth, which might suggest continuing follow-up with scans rather than initiating treatment. The fact that your sister has a compromised right lung is also a factor that might suggest a conservative treatment approach.
You can read about neo-adjuvant (before surgery) and adjuvant (after surgery) chemo in Dr. Wakelee's post here: http://cancergrace.org/lung/2010/05/17/systemic-therapy-for-resected-ns…
Reply # - September 9, 2014, 07:49 PM
I would say that if a cancer has been diagnosed and it's contained within a single lobe of the lung, and it's large enough to be clinically significant (not just a few millimeters in size, for instance), surgery is a very appropriate recommendation. Chemotherapy is sometimes considered before surgery, but it's not the standard approach and doesn't have a clear role in her situation. I would consider chemotherapy to be on more solid ground than alternative therapies, which have no evidence of actually effectively fighting the cancer and would likely be tantamount to just letting the cancer progress over time.
Jim is right to point out that some lung cancers can be indolent, but we do generally favor surgery for a growing lung cancer or one that is proven to be invasive cancer by a biopsy.
Reply # - September 12, 2014, 07:11 AM
First, dear Jim, thanks so much for getting back to me and for your comments.
I am very sorry to hear about the loss of your wife, but incredibly moved and cheered by how you have found joy and new love through the GRACE community.
Dear Dr West
Thanks very much indeed for your helpful thoughts. Is it all right if I ask another couple of questions? I realise that each individual’s illness is different, so anything at all can happen as far as my sister is concerned. Nobody can make any definite predictions.
I have seen that the mortality risk of the surgery itself is 3% - 5%.
But on a statistical basis, how often after lobotomy surgery for someone with my sister’s diagnosis – Stage 1B - T2a N0 M0 adenocarcinoma lepidic growth pattern - are there recurrent tumours and in what sort of time period?
And in what percentage of cases - if any - does the surgery achieve a complete lasting cure?
Is ‘lasting cure’ from lung cancer ever possible for anyone ? (While obviously taking on board that we are not immortal so we’re all going to go from something eventually.) Lots of studies talk about 5 years or whatever, so I don’t know if there is any data, or just general knowledge about more long-term survival than that. Does pretty much nobody with lung cancer live longer than 5 – 8 years? Or is there any lucky but meaningful percentage that live another 10 – 25 years??
With very many thanks. I really appreciate the wonderful opportunity GRACE gives to find out important information and get support in this way.
Reply # - September 12, 2014, 11:29 AM
Yes people do achieve a cure from lung cancer especially from stage I and II and especially if no lymph nodes are involved. Meaning the cancer in question is gone completely. The 5 year mark is a measure for those who have been treated with curative intent then live 5 years without it recurring. We can assume the cancer is gone and not lurking around in the blood or lymph system if it's not shown itself in 5 years.
I forget the stats on cure from Stage 1B – T2a N0 M0 but they're around or over 50%. Some FYI, chemo isn't expected to cure cancer on its own but can help wipe up some of the last cells as when used as adjuvant chemo. Surgery and radiation have the ability to get all cancer cells if they are in one place such as just one tumor.
The problems occur when cancer spreads. Once outside the primary lung it's thought to be in the blood or lymph system circulating until it finds a place to attach and grow. At this time we don't have a blood test the will show lung cancer in the blood like some other cancers so we have to use the info we do have and treat from there. What happens sometimes is we think someone has early stage cancer (I or II) but really the cancer is already in the blood system, we treat as if for a cure but it will show up, probably within 5 years.
I hope this helps and I hope your sister will be cured.
Reply # - September 12, 2014, 06:34 PM
As Janine said, lasting, true cures are certainly possible, and they're more likely than not for a stage I cancer, with a 5-year survival of about 75%. I would also say that your estimate of the risk of dying from surgery is high, and I would put it at more like 1-2% for a lobectomy.
Most cancers recur within 2-3 years if they're ever going to (about 67% of recurrences that will ever happen will have occurred by 2 years after surgery, and around 75-80% of recurrences that will ever happen will have occurred by 3 years after surgery). However, the slower-growing the underlying cancer, the higher the probability that a recurrence will be late. So for a likely indolent cancer like a BAC/well-differentiated adenocarcinoma with a significant lepidic pattern, one that hasn't changed over several months, the chance of still being alive is quite favorable at 4-5 years, but there is less reassurance of being "out of the woods" with almost no risk of recurrence if you're alive at that time.
Essentially, fast-growing cancers recur early or not at all, while slow-growing cancers are more likely to have a recurrence late or never.
That doesn't mean it's not helpful and wise to do surgery if the cancer is entirely confined to one lobe. If so, there's a very real chance of cure.
Reply # - September 12, 2014, 06:48 PM
Thank you, Rachel. As you can imagine, I am extremely grateful to Dr. West and GRACE, for many reasons.
Reply # - September 30, 2014, 12:31 PM
Dear Janine, thanks very much indeed for your helpful answer to my questions, and for your kind wishes for my sister. What your husband has come through is inspirational – I send blessings and good wishes to both of you.
Dear Dr West
I am very grateful to you for clarifying things further.
I hope it is all right to come back to you. My sister had a date for surgery this month but has delayed it to November. It is her life and I haven’t yet tried to influence her course of action – she would have resented that.
But it would be awful if her current situation has some possibility of a complete cure, which is lost if much more time goes by and the cancer spreads.
It is 7 weeks since her diagnosis.
Things may have changed in this time, but her diagnosis - 2-3cm in apical segment left lower lobe - T2a N0 M0 with lepidic growth pattern – leaves some questions.
Would it be helpful/possible to know + reasonable to ask for some/all of the following:
molecular markers (which?)
Whether tumor is mucinous or non-mucinous
Whether it has micropapillary pattern
Also, I’ve seen that T2a N0 M0 has one or more of these features:
• It’s larger than 3cms
• Has grown into main bronchus but isn’t within 2cm of carina
• It has invaded visceral pleura
• Tumor is partially clogging airways
As tumor is/was just 2-3cms, it suggests that one or more of the other features applies.
After CT scan and CT-needle biopsy would there already be answers to any/all of the above? If any/all those things create more problems, does surgery still have reasonable chance of good outcome?
(I took on board what you said about recurrence of slow-growing cancers.)
With very many thanks,
Reply # - September 30, 2014, 08:13 PM
There is no clear role or value in testing molecular markers or testing a genetic signature in this setting. These are sometimes done in an investigational setting but are not the standard of care and not routinely done or recommended.
You could potentially learn from a biopsy about whether the tumor appears mucinous or nonmucinous and whether it has a micropapillary pattern, but these things are not consistently discerned based on a small biopsy and don't change any management recommendations.
I wouldn't read too literally about the staging before a surgery. It's not accurate until the cancer is out.
I applaud your effort to learn as much as you can but would suggest you don't get many steps ahead of where things are right now. The findings are that she appears to be a good candidate for surgery, and that would be the recommended treatment.
Reply # - October 1, 2014, 12:49 PM
Dear Dr West
Again, your helpful comments are very much appreciated. I guess my sister is lucky that she is a candidate for surgery. I pray that whatever treatment she has is successful, and that she decides on her course of action while all options are still open to her.
She has mentioned wanting another CT scan. Would having that – on top of the two already done on 5/20 and 8/5, plus CT-guided biopsy 8/7 – have adverse effect on her disease?
If she decides to go ahead with surgery – either this month or next – is it likely that another CT scan would be done anyway prior to treatment?
With grateful thanks to you and GRACE
Reply # - October 1, 2014, 01:55 PM
I'm not sure what her reason would be for having another CT, but it should not have an effect on her lung cancer, as the risks from a single CT are quite small.
If there is a long period between the prior CT and the surgery, it's possible that a new CT might be ordered.
Reply # - October 1, 2014, 07:38 PM
So yes, I think there are several reasons to repeat a scan if it has been a long while since the last scan was done.
First, it's possible that the cancer has progressed enough that it is now at a stage for which surgery wouldn't be clearly indicated. I hope that isn't the case, but if the cancer is more advanced in October than it was months earlier, it's worth knowing that before undergoing the rigors of surgery.
Second, even if nothing has changed, or things have changed very little, it's valuable to get information about the underlying pace of the cancer. This is a very helpful variable to understand , as I explain in this link:
Reply # - October 10, 2014, 07:26 PM
Dear Jim, My warmest good wishes to you and thanks very much indeed for your helpful comments.
Reply # - October 10, 2014, 08:39 PM
Dear Dr West
I realise each cancer is different. My sister wants to organise an X-ray to see if the alternative treatment she’s been having has reduced the size of her tumour, in which case she’ll refuse surgery.
Her last CT scan was 8/5, so the interval between that and her next – if she goes ahead with the lobectomy in Nov or earlier - will be 2 – 3 months.
My sister’s diagnosis in August showed she was a candidate for surgery. I believe – is this correct? - that for her apparent status, surgery offers 35% prospect of a lasting cure.
Her cancer’s BAC element means there will be risk of recurrence for a long time.
If my sister’s next CT scan shows her tumour has grown, she may no longer be a candidate for surgery. Or it may have grown a bit, with surgery still an option. I assume in that case she should have surgery without further delay..
But if the next CT scan shows little or no change, isn’t surgery still the best thing to do? , Many people with lung cancer don’t have this possibility - it offers the chance of a cure.
Judging issues of progression, indolence and not over-treating are difficult.
I’ve no idea how long it took for my sister’s tumour to grow – could it have been many years?
Is it possible to make any assumption about rates of progression or indolence – except in retrospect? The BAC component suggests a slow-growing cancer, but is it just a case of waiting until years have gone by with no disease progression – in which case all well and good. Or of waiting a shorter time to find that disease has progressed, surgery is no longer an option, and the chance of survival is gone.
Do people with indolent lung cancer often live comfortably for a long time? Can an indolent T2a N0 M0 BAC adenocarcinoma ever take 10 – 20 years to progress significantly, or is one looking at a much shorter time frame?
I see you’ve said removing sufficient lymph nodes in surgery is important to achieve a better outcome.
Thanks so much to you and GRACE
Reply # - October 10, 2014, 11:07 PM
I'm sorry, but it's really not feasible for me to answer 8-10 questions all at once. It's much easier for me to address one or at most two clearly prioritized questions, as long as they don't ask for medical advice or for insight about the specific situation of someone who isn't my patient.
There is huge variability in how BAC behaves, with some cases behaving very aggressively, sometimes refractory to any treatment, but very often it is among the most indolent lung cancers. That means it can be so indolent that it may take 1-2 years or more to have the cancer change on imaging, and it may never threaten survival, even if the cancer is always detectable and may be growing over time. If it takes 40 years to grow to the point of being a threat to survival, that's often effectively irrelevant for many patients. Similarly, while a person MAY have a recurrence years after initial surgery, if a cancer takes 7 years to even become detectable after surgery, it's very likely that it will be 10, 20, or maybe 40 years before it is a real threat.
As an aside, I'll say that chest x-rays are extremely unlikely to be helpful in detecting remotely subtle changes in a BAC over time. BAC lesions often take many months to even years to show changes on a chest CT, which has a resolution remarkably higher than a chest x-ray.
Reply # - January 9, 2015, 03:05 PM
Dear Dr West
Very good wishes to you, and to everyone in the Grace community, for 2015.
I'd be most grateful for any thoughts.
A study was published in the December 2014 issue of the American Journal of Roentgenology. re the unrecognised significance of aerogenous spread of primary lung adenocarcinoma - especially relevant with invasive mucinous, papillary and micropallary subtypes.
Where primary tumour has been removed in lower left lobectomy – do you think bronchiectasis in the middle lobe of right lung could leave a patient – with possibly one of the above subtypes - more vulnerable to any aerogenous spread of disease?
Can anything generally be done to maximise chances of survival?
Keeping lungs free from infection, either with nebulised hypertonic saline, or antibiotics, is obviously important. But do you think it has any connection with cancer?
By the way, I believe radiologists regularly under-stage when diagnosing lung cancer. Is the correct staging usually/often/regularly told to patients after successful operation?
With very many thanks, as always,
Reply # - January 9, 2015, 03:30 PM
I am not certain what the significance of aerogenous spread would be for staging and management of lung cancer, since the main consideration for staging is where the cancer has spread outside the lung (whether locally or distantly), and the article you cite seems to refer to spread within the lung.
After surgery for early-stage disease, if there is an indication that the cancer has spread beyond the local site, the cancer is re-staged and the patient is informed of the change, since treatment strategies change along with the change in staging. I suppose that some doctors might not actually state that the staging has change from I or II to III or IV, instead just informing the patient that the appropriate treatment options have changed because of the findings resulting from the surgery.
Reply # - January 9, 2015, 04:29 PM
Thanks very much indeed for getting back to me.
The paper I've mentioned is re aerogenous spread of disease being much more significant than up to now thought - "that lung adenocarcinoma may spread through the airways and not just through the blood". So I was thinking of it re potential disease recurrence, not in terms of staging.
I believe radiologists regularly downstage disease. I've seen it written in the literature, then I spoke to one radiologist who said this is because where there is any doubt - as might often be the case before operating - the lower stage would be given, because surgery is thought to be best option, so they wouldn't want patients to be incorrectly/unnecessarily denied opportunity of that treatment. So I wondered about patients being enlightened on correct staging after surgery.
With thanks again + lots of good wishes to you for the coming year,
Reply # - January 9, 2015, 09:02 PM
I think the approach to informing the patient is a function of the individual thought process of the doctor, but the general trend is to be transparent in giving patients important information like as precise staging as possible.
Aerogenous spread has been identified as a potential mechanism for BAC-type lung cancer for many years, but these cancers are still infrequent enough that this issue isn't very well studied.
To my knowledge, there is nothing in terms of pulmonary hygiene or treatments for other pulmonary issues that have a significant effect in terms of reducing risk of aerogenous spread of a lung cancer in the spectrum widely thought of as bronchioloalveolar carcinoma (BAC).
Reply # - January 6, 2022, 09:35 PM
My wife 73, has undergone 6 Ct scans, 2 biopsies 3 months apart in different areas, one causing a collapsed lung, a PET scan has been done. She has multiple growths in both sides of her lungs described as lepidic. Her lung function is fine. She has some cough but no other issues. All this over the past year. There have been no changes in a full year but the PET indicates a couple of areas of slight metabolic activity. These growths are not small one is 3.5 Cm others are 2.5 cm. The biopsies found no cancer. There is nothing outside the lungs. Surgery can not be done. It was suggested a lipid biomarker test be done but she was told the test may not show any markers. What does a person do in this situation? Does she have indolent cancer or just a lung condition?
Reply # - January 7, 2022, 01:17 PM
Please excuse the late response.
Hi John, Welcome to Grace. I'm so sorry your wife is going through this. You've asked a good question. One that I couldn't answer when my husband couldn't get a diagnosis 12 years ago for what turned out to be nsclc. He had 2 biopsies and a VATS all undignosable. Only a thoracotomy was able to capture the cells. His was aggressive and needed prompt attention, hence the thoracotomy. And he had a 3rd biopsy for suspected met that caused a collapsed lung. I think you're the 1st person I've spoken with that had all these similar diagnosing issues.
If this is cancer that y'all have been watching for a year it must be slow growing and treated only when needed to control symptoms. That type of cancer can sometimes be treated as a chronic condition that needs attention periodically.
A second opinion at an academic center is very possibly in order. This is an excellent "Insider's Guide" to 2nd opinions. Today, they can often be done via web or phone.
Let's see what Dr. West has to say.
All the best,
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - January 7, 2022, 03:39 PM
I'm sorry to hear about what your wife and you have been going through. This sounds extremely like the disease previously known as "bronchiolo-alveolar carcinoma" (BAC), which has had the name revised to "lepidic-predominant adenocarcinoma". It is well known for often being very slow-growing, often appearing in multiple parts of the lungs, and it can be hard to diagnose. Here is a link to a (painfully long) summary of this entity that is more than 10 years old, but it states what we knew at that time:
And here is a summary of how the actual experts manage this once it's diagnosed:
In a nutshell, there's no urgency to intervene if you see little changing over time, because there's a risk of "overtreating" this with therapies that may make no difference and not be needed but can have side effects.
However, this does presume that you have made a diagnosis, because it's always possible that the hazy findings on imaging are infection or inflammation and not the slowly-growing cancer that we might suspect. I don't know who has been doing the biopsies, but if you haven't had an "interventional pulmonologist" or thoracic surgeon involved, this could help. A CT-guided biopsy or bronchoscopy by someone who isn't an interventional pulmonologist may not be as successful (or you can certainly have bad luck), but it may ultimately require a minor (minimally invasive) surgery called a "video-assisted thoracoscopic surgery (VATS)" to make the definitive diagnosis. This would need to be done by a thoracic surgeon, specifically a surgeon who only focuses on lungs, not a cardiothoracic surgeon who does heart surgery and lung surgery here and there, or a general surgeon who does gallbladder surgeries and appendectomies, and also says that they also do lung surgery.
That said, I'd again emphasize that if it isn't changing, there isn't necessarily anything to do, so there is not a clear imperative to press for a diagnosis of a process that would likely not need treatment anytime soon. The main reason to chase it down would be to know for sure what this is, and to be able to run molecular marker (biomarker) tests to look for mutations that may have a very effective targeted therapy for them. But even if there is a marker for which there's a good target, I don't tend to start patients who have no symptoms and essentially no growth of their disease over time on a therapy just because we know that a therapy exists.