I'm very confused. - 1264050

Mon, 05/26/2014 - 15:29

When we went to the surgeon he told my mom that she's lucky because the place of the tumor is on the bottom and all he has to do is cut out half of the lobe and it is a 98% cure.... Why is it that everywhere I read people with adenocarcinoma stage 1 have surgery and 2 ...3 years later something else pops up in the brain. Not withstanding the 2% how is this happening ?

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Dr West

It could be that this is a very low risk cancer, such as one that is mostly or completely non-invasive (in which a <5% risk is very realistic), but otherwise, the risk of recurrence is higher than 2%. The risk of recurrence of a stage I lung cancer is 20-30% overall. What this also means is that most people who undergo surgery for a stage I lung cancer are truly cured, so when you're hearing or perceiving that most patients are recurring after surgery, I suspect that's because the 70-80% of patients who are truly cured 2-3 years later are not very likely to be writing in, or it's less memorable when they do.

Good luck.

-Dr. West

malki13

Dear Dr West,

Please help me sort this out. We went back for follow up. Not much discussion. Doctor said this is NOT BAC. This is an invasive cancer "the kind we see all of the time". Right now the PET, CT scan, CT Guided Biopsy, Brain CT are "the best tests we have right now" and they indicate no spread. He cannot tell if there are any small ones anywhere else. If there are: no cure. If there are not then "she should be ok." I'm confused by his change in excitement of "how lucky she is" without an explanation. Last week easy 123 this week invasive get it out!

Pathology: malignant cells present (mucinous adenocarcinoma) they had that part in parentheses...BLock a2 predominantly blood clot and a few benign columnar epithelial cells and rare nest of neoplastic cells then somewhere else..background pneumocytes rare cluster of epithiliod histiocytes and few multinucleated giant cells suggestive of a granuloma are also present..Addendum: immunochistochemical staining strongly positive for CK7 and focally positive for Napsin and TTF-1 Negative for CK20, CDX-2, GCDFP-15 profile consistent with an adenocarcinoma of the lung. But the doctor said it could be adenocarcinoma or squamous. Why? no answer.

Since this was found on xray April 9 he said in the month of June should be done. He is not available until June25th. My mom is 86 years old. received clearance from her cardiologist (pacemaker, 4 stents, bypass surgery, high blood pressure, but surgeon described her as a young 86 year old) pulminology function tests were slightly decreased in comparison to 10 years ago ...so that was good. Questions: What kind of lung cancer does my mom have according to the report? What do current studies say about safety for people in my moms age group in terms of surgery and recouperation? We would like to move surgery up with another surgeon are our emotions making poor decisons? We just want my mom to have the best outcome given all of the wrong turns over these 12 years

catdander

Hi malki13, I know you're directing your questions specifically to Dr. West but we have several cancer specialists who contribute to the site. However they are at a or many "The" big cancer conference of the year many of them presenting so they may be slow to comment. Your questions have some very basic components that I feel very comfortable commenting on.

It's impossible to guess why someone's excitement comes and goes without asking. However it seems that the doc thought at first the cancer was a type of adeno nsclc that can be very indolent, called BAC. But today maybe after path report he sees it isn't BAC but a more typical adeno nsclc that can be more aggressive. (Note the words can because typically indolent cancers can be aggressive and vise versa, only time will tell.)

All the tests and scans are the standard for diagnosing lung cancer and its stage. However with all the technology we have there remains the possibility that there are very small nodules that aren't yet big enough to be picked up on CT. Also there today no tests to determine if there are cancer cells circulating in the blood or lymph system.

Grace isn't set up to read and report on individual's path reports. It should be no problem for doc to explain the findings. It's not that unusual for there to be ambiguous findings that make it difficult for the pathologist to determine between squamous and adeno. There is very little difference in treatment, squamous nsclc doesn't respond to alimta, one of several available chemo drugs. The drug avastin which is sometimes added to other chemo drugs has too high a risk for bleeding in those with squamous so it's not given to squam either. Other than that there treatment is the same.

No one who is not personally involved can say whether your mom is physically able to benefit from surgery.
I'll post links in the following post with some specialists' views on the subject that may help with this difficult decision.

cont'd...

catdander

It's very encouraging that your mom has an early stage cancer with the possibility of a cure. Some people who don't choose surgery in this type of case instead have radiation and chemo.

Let me add about the tx differences between adeno and squam that elderly patients did worse when given avastin so your mom probably wouldn't be a candidate for it if she were sure of histology.

http://cancergrace.org/lung/2011/10/03/lilenbaum-on-lc-in-elderly/
http://cancergrace.org/lung/2013/10/27/options-for-elderly-with-early-s…
http://cancergrace.org/lung/2012/03/22/dr-weisss-highlights-in-lung-can…

I hope this helps and all the best to your mom.
Janine

malki13

Thank you...and of course was asking about age in general not my mom and was just curious what the pathology says. Im confused as to what mucinous adenocarcinoma is if it isnt musinous BAC.

malki13

Oh I would alsoikes to add that the doctors change in excitement was after seeing pathology and then on follow up different . So it was after seeing pathology that he was looking at this as simple. And then upon follow seemed short on answers

malki13

Also I must be having a problem with what I wrote and ask ... For some reason I see the questions answered and responded to when others ask but then when I do I'm doing it wrong. I have seen dr west explain the tumor markers or explanation of words in a path report before and so I figured its ok. I haven't asked for personal guidance in terms of telling me what to do. I just wanted to know what mucinous adeno carcinoma means if it isn't mucinous BAc.

catdander

I'm sorry you feel you're not being treated fairly. It's true our faculty doctors often answer questions specifically written out in the guidelines not to ask. If it's not against the law or unethical it's hard for them not to answer; they're a wonderful breed of intelligence and innovation and caring. However it does take up a lot of time to answer everyones questions so we ask that you look up definitions, give a try at searching for previously answered questions, and ask your doctor questions about something as specific as what the report means. But we will do our best to get you where you need to be, it's the only reason we're here. We've tried to set up Grace to give the most info to the largest population. Our doctors have a full load of patients and do research, they aren't paid to help out here on Grace, but they want to change how people involve themselves with their own care. It's rare to find a doctor who isn't terrified of a person who starts a sentence with, "I read online...." Everyone of our faculty doctors want to change that, to use the web as a tool for patients and caregivers. The forum and our library work very well together to teach us laypeople what we need to know to help make treatment decisions.
So yes you will find it's not always fair here but we will try to get you where you need to be.

A couple of years ago there was a renaming of BAC terms however the old way of talking about it remains a mainstay here. I found the answer to your question about these terms from a google search, "Finally, because mucinous BAC (> 3 cm) has a poorer prognosis and in many ways does not comfortably cluster with nonmucinous lepidic tumors, this category was renamed mucinous adenocarcinoma and moved to the grouping that contains the other mucus-producing variants of adenocarcinoma." http://jco.ascopubs.org/content/30/13/1401.full Hence it's very much like typical adeno nsclc.

I hope this helps explain some things,
Janine

Dr West

Malki,

It is a mucinous adenocarcinoma, which is an invasive cousin of what has historically been called mucinous BAC -- BAC is a non-invasive cancer.

I cannot address how or why her doctor said other things. I can say that there is no way to answer what an 86 year old patient with lung cancer should do without seeing the patient and seeing all of the details of the scans, etc. for the person. It is always reasonable to seek a second opinion, especially when there is no clear best answer. It's very likely that the best course of action is subject to a lot of judgment in her case, so I think it could be very helpful for you to seek a second opinion from someone else, especially if you don't feel you've gotten a clear answer to your questions thus far.

Good luck.

-Dr. West

malki13

Thank you very much to you both for your time and answers. We go for our second opinion on Tuesday at Sloan and I certainly hope that while it sounds not so good...that surgery is still recommended with the intention of a cure for the apparent stage 1. Thats all I can pray for today. I will have no choice but to deal with whatever comes....But thank you so very much.
Malki

malki13

UPDATE

Went for second opinion at Sloan. Mom's pacemaker surgeon recommended this guy. Meticulous. He confirmed the diagnosis. Stated the size of big tumor 4.7x4.5x 5.0. Stated that there is another nodule under this ( did not hear about that) Also stated that right lung has two don't know size but I remember seeing this on the PET scan. SUV 1.1 for both. Doc from Columbia University said "he thinks its inflammation" and has scheduled a surgery for end of June. This doc at Memorial Sloan mentioned it and since he didn't say much i felt it was important but did say ..."it could be inflammation"...when I told him other docs thoughts.
(how do you really find out?)
In order for Sloan guy to consider surgery which he did not say yes or no to .."you had 4 stents and by pass surgery" moms pressure was 180 over 70. He didn't mention that as a problem. He did not like the pulmonary function test results because there were no numbers and our cardiac clearance did not present recent stress tests results. "how do I know that the cardiologist isnt clearing her on simple visits where he took her pressure each time"? I completely love this guy for rejecting these clearances until he does his own. It was one of my concerns with Columbia.

Bottom Line: Doc said standard of care is "can this tumor be removed.
"can this tumor be removed safely.
He said them very clearly as two separate statements.

We are scheduled for pulmonary and stress test Monday at Sloan and back to Sloan doc on Tuesday of next week. Only thing still lingering are these nodules in the right lung. Appears to be a game changer from what I read if its not inflammation....but was not addressed further today or concerned about by Columbia surgeon. I'm guessing this meticulous guy has plan for that....so its more waiting.

JimC

Hi Malki,

The only way to know whether the right lung nodules are cancer is to biopsy them, but if they are small that can be difficult or impossible. Given your Mom's age, the plan may be to surgically remove the tumor and keep a close watch on the other nodules, rather than delay the surgery while trying to biopsy the nodules.

Good luck with the pulmonary and stress tests, as well as the surgery if that is the path chosen.

JimC
Forum moderator

malki13

CORRECTION ...there is ONE in the right mid lateral lung zone 10 mm 1.9 SUV. There is ONE in the left lower lung zone measuring 5 mm. SUV 1.6.. I'm wondering if inflammation moreso presents as many tiny nodules.as opposed to two foci . Given the diagnosis...I'm not sure why Doc would think its inflammation rather than a spread.

malki13

CORRECTION ...there is ONE in the right mid lateral lung zone 10 mm 1.9 SUV. There is ONE in the left lower lung zone measuring 5 mm. SUV 1.6.. I\'m wondering if inflammation moreso presents as many tiny nodules.as opposed to two foci . Given the diagnosis...I\'m not sure why Doc would think its inflammation rather than a spread.

Dr West

There is no way to know that based on looking at the imaging.

There is reason to be concerned about the distinct possibility that these are going to be VERY slowly growing and that is less of a threat to your mother's survival than a surgery. An SUV that low is usually associated with a very indolent process. It's critical to be very thoughtful about risk vs. benefit, and the risks are very real for an 86 year old with many medical issues, while the benefits are very unclear if the cancer is an exceptionally slow-growing process.

-Dr. West

malki13

Thank you Dr West,

I just saw this so not sure if I updated elsewhere. The nodules in the right were deemed inflammatory because memorial sloan took another ct last week. Showed no growth in the last two months since ct scan was done on the large one and the right ones got smaller and the other 5 mm isn't even seen. The tumor from two months ago is stable which is good from a surgical standpoint was told. Tumor is 5cm diameter.
But the cancer is identified buy pathologists at sloan and columbia as invasive non small cell so would that still mean it could be indolent?
Thanks
Malki

JimC

Hi Malki,

Even an invasive cancer can be quite indolent, to the point of being non-life-threatening. You may want to review this post by Dr. West, in which he discusses some of the issues you raise: http://cancergrace.org/lung/2013/04/13/follow-up-duration-for-ground-gl…

In particular, he states that:

"Even when [these nodules] turn out to be something technically called cancer based on [their] appearance under the microscope, it’s often a non-invasive adenocarcinoma (sometimes termed bronchioloalveolar carcinoma, or BAC, but shifting in terminology to adenocarcinoma in situ, or AIS) or minimally invasive adenocarcinoma (MIA), in which the invasive component is less than 5 mm in diameter. Even when they grow, it can be at an extremely slow pace.
...

"What I think is also critically important is the distinction between an extremely slowly changing nodule, even one that is technically called an indolent cancer, and one that is actually a threat to a person’s survival over the next few years, or perhaps EVER. What this report shows is that any lesion that doesn’t change over three years is clinically insignificant. However, it doesn’t say that a lesion that grows by 2 mm over 2.5 years is actually a threat: even if it’s called a cancer technically, it might actually only become a problem if it grows over 40 more years."

Especially in the case of an older patient, it can be very important not to over-treat, since the treatment may create worse problems than the cancer could cause in any meaningfully relevant time period.

JimC
Forum moderator

Dr West

I completely agree. There is a very real risk of overtreating and doing more harm than good by intervening with an aggressive treatment in an 86 year old with a cancer that has progressed minimally over a long period of observation.

-Dr. West

malki13

Thank you Jim,

I appreciate your responding. I only wrote to dr west as a response to his response, not intending to leave out response from any other wonderful people on this site.
I actually have read the article/ link. I truly hope that the doctors at these major institutions in New York that treat cancer would use this information in treating their patients. I can see that my mom is having symptoms. She is tired in a very different way than her age identifies and she has no appetite. But in truth I am worrie that the surgery will become more of aong term problem. That's my biggest fear today. I am definitely unclear as to why they didn't say wait.... Exceot for tumor doubled in size not sure in how much time and the doctor said if she wants to live until 90 95 etc she needs this surgery. I would welcome any other thoughts or suggestions
Thanks
Malki13

malki13

Hi and thank you.....they proceeded with surgery today but found tiny nodules all over the lung and some fluid and the doctor said there was no point to taking out the lobe. I think I still,don't understand. Testing for malignant pleural effusion. I asked the doctor what stage it was and he said "at least stage three"
Malki13

JimC

Malki13,

Usually a surgeon will not proceed when it becomes obvious that the cancer has spread farther than thought, because the debilitating effect of the surgery would require a period of recovery which would make the systemic treatment (chemo or targeted therapy) inadvisable until the patient has regained enough strength to tolerate it. Removing only part of the cancer is ineffective if the cancer has spread.

The doctor said it was "at least stage 3" because he saw evidence of local spread, and if there is a malignant pleural effusion that would categorize it as distant spread, making it stage 4. If you haven't already seen it, Dr. Weiss has a very thorough "Introduction to Lung Cancer" here: http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/ in which he explains staging.

JimC
Forum moderator

Dr West

Here's another link that might be helpful.

http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

Multiple nodules means that it's overwhelmingly likely that the cancer is present in areas beyond where the cancer can be seen. And a malignant pleural effusion (cancer in the fluid outside of the lungs) means that cancer can travel through the bloodstream to faraway parts of the body. It's an index of disease elsewhere in the body, whether you can see it on scans or not.

Good luck.

-Dr. West

malki13

Thank you very much...when you beyond where the cancer can be seen you mean even microscopic nodules in the same side of lung can mean in other organs.? How do you find out where it went? How do we find out our best options?...

Thank you...we are so devastated. But I guess that's a common emotion here.
Malki13

JimC

They are called circulating tumor cells, and with lung cancer they can metastasize to other organs. At present, they can only be easily detected when they form metastases which can be seen on scans.

JimC
Forum moderator