They opened her up and the closed her up - 1264524

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malki13
They opened her up and the closed her up - 1264524

My moms ct scanned localized lung cancer was not stage one. They opened her up today and closed her right back up. Doctor said it has many nodules in the lung and possibly in the fluid and taking out the lobe would not help. Adenocarcinoma he said at least stage 3. I have no idea where we go from here but it does not sound positive. Any hopeful words would be greatly appreciated
Malki13

JimC
Reply To: They opened her up and the closed her up

Malki13,

I'm sorry to hear the results of your mom's surgery. I assume there will be a discussion with her oncologist regarding the next step; if he feels she is fit enough that may include chemotherapy or a targeted agent (I'm not sure if her cancer has been tested for mutations). We will hope that she is one of the patients who responds well to treatment.

Sending positive thoughts your way,

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

malki13
Reply To: They opened her up and the closed her up

Thank you Jim, I think we still don't understand why they didn't remove the lobe..... Is it because minuscule nodules were found all over the lung and some fluid.?

JimC
Reply To: They opened her up and the closed her up

Malki13,

I responded in your other thread, but here is another post from Dr. West which may help: http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-metas...

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
Reply To: They opened her up and the closed her up

Yes, that's probably what happened. With lung cancer there isn't improvement in longevity by taking just part of the cancer out but there is quite a bit of danger to ones health by removing lung tissue. So leaving it be until they find out if she is stage IV is the most helpful thing to do. There is much written on the subject here. such as, http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-metas...
http://cancergrace.org/lung/2014/03/16/invisible-disease/
http://cancergrace.org/lung/2013/03/16/harpole-on-lc-staging-advances/

I hope some of this is helpful in understanding what's happening. The stress from cancer doesn't sneak up on you but jumps right in by being a very complicated thing to need to understand from the beginning. It sounds like the doctors are moving in the right direction with your mom's health foremost in their plans. There is a consensus that things calm down once the diagnosis is sure and a treatment plan is made.

All best,
Janine

malki13
Reply To: They opened her up and the closed her up

thank you ....the more I think about it I am still in shock and confused. he said that he is biopsying the fluid and the lung had multiple tiny nodules. When I asked him if it spread to the other lung he said"...mam...do I know what is on the other side of the wall?" I guess I asked a stupid question? I'm trying to figue out how a cancer that was most likely not a cancer ...became an invasive cancer that ct scn shows localized....to going in for surgery...making her go through the VATs and the recover and not taking out the 5cm tumor.

I read the article and even in the dsecription well written the big army (primary tumor) seems more dangerous then the little tiny ones. the docotr said she will have to recover for 4-6 weeks before any treatment. wouldnt that be the same as with taking the lobe out?...the most offending part :(?

Dr West
Reply To: They opened her up and the closed her up

I offered a response in the other thread that included the same link Jim also provided. I guess great minds think alike (or we've just underscored how superfluous I can be)

I am very sorry to hear about this development, malki. This unfortunate development isn't uncommon, and it sounds like the surgeon made an appropriate judgment based on the findings at surgery. With only very rare exceptions, there's no value in doing a surgery that doesn't have a realistic probability of being curable.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

JimC
Reply To: They opened her up and the closed her up

Malki,

Perhaps it should also be noted that the surgical procedure of opening up and then closing can stress the body, but nowhere near as much as removing a lobe. So the recovery process should be somewhat faster, with fewer complications.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

malki13
Reply To: They opened her up and the closed her up

Thank you Jim....that actually makes me feel better regarding the surgery
Thank you dr west. That helps me understand even more. This sounds like a very poor prognosis.

malki13
Reply To: They opened her up and the closed her up

Stupid question...... When a surgeon goes in via VATS and sees multiple nodules too small to be picked up on scan or Pet scan....can he tell by looking at then that it's cancerous and not inflammation?

Dr West
Reply To: They opened her up and the closed her up

There is some potential overlap, but there are cases in which there can be little doubt that it's cancer. Often the surgeon will biopsy one or more just to be sure, but I think it's overwhelmingly likely that if the surgeon saw what he says was clear spread of cancer as multiple nodules, it's an accurate interpretation of what he saw.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: They opened her up and the closed her up

Thank you Dr. West.

gn21
Reply To: They opened her up and the closed her up

Hi.

The same thing happened to me. 5.5 years ago. And clearly I'm still here. Make sure they test for genetic mutations.

Gail

Dr West
Reply To: They opened her up and the closed her up

Yes, a very helpful reminder of the possibilities!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

The doctor said he doesn't know what the treatment will be but mentioned chemotherapy and or radiation. Does anyone know what proton radiation is and if it works for stage 3? How effective are cancer treatments in the elderly with heart disease? Where here can I learn more? I would like to share that the risks of this surgery were all that I worried about and thank the lord medically she is doing well right now even with the tumor and he two chest tubes (im assuming for the extra one for the pleural fluid?) She is however having a facial flush and is now in the middle of a severe dementa episode ( not her at all) due to ativan which became necessary yesterday after pulling all narcotics because she uses ativan on a regular basis and was in withdrawal.

JimC
Reply To: They opened her up and the closed her up

Malki,

Proton beam radiation is the expensive “new kid on the block” in radiation treatment. As Dr. West described it:

“Proton beam therapy is a technique that allows radiation to be delivered to a particular depth within tissues and then stop, minimizing radiation “in front of” and “behind” the target point (I’ve heard proton beam therapy described as similar to a light saber, going out to a point and then stopping, while radiation would be more like a laser beam, affecting everything in its path — although I think the light saber analogy isn’t quite right in that proton beam radiation shouldn’t deliver much radiation leading up to the target point either). It does allow very detailed administration of radiation to tight areas and is particularly great around the eyes, and it’s also used for some rarer children’s cancers, I believe. It’s being used more and more for prostate cancer, but the problem is that it’s not clear that it provides benefits beyond many other better studied and more widely available tools.”http://cancergrace.org/forums/index.php?topic=788.msg4102#msg4102

As he also describes in that post, the proton beam facilities are very expensive to build, so it is being marketed to many patients for whom it does not add a significant marginal benefit. Certainly the cost and inconvenience of traveling overseas would be a major factor in your decision.

In a subsequent post in that thread, Dr. Goldberg cites an early study which suggests some benefit, but she concludes:

“It is much too premature to suggest that proton beam treatment is better than IMRT or SBRT (intensity modulated or stereotactic body radiation therapy). It is unlikely to be worse, though, by the same token. But definitely more costly.”

[continued in the next post]

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

JimC
Reply To: They opened her up and the closed her up

[continued from the previous post]

Dr. West added:

"Proton beam radiation is unquestionably more expensive, but it’s not clearly better than conventional and still quite advanced radiation techniques like IMRT (intensity modulated radiation therapy) for lung cancer and most other common cancers. The challenge is that it is marketed very aggressively because the centers cost so much that the people need to recoup their $200M investments, which you can’t do if you limit yourself to the few clinical situations in which proton beam RT is actually a clearly superior choice. So you market the hell out of it, provide vague innuendos that newer and more expensive is better, and take advantage of the fact that people are inclined to believe that more expensive must be superior. You can certainly use some dizzying physics theories to provide a plausible smokescreen in the absence of actual evidence it’s better.

It’s possible that additional studies will ultimately demonstrate that proton beam radiation is superior for lung cancer and other common cancers, but not necessarily. A study in prostate cancer showed it was clearly NOT more effective and was associated with worse side effects than more readily available IMRT, perhaps because the more sophisticated software for more mature radiation platforms allows better tailoring of the radiation field than most current proton centers, which have more rudimentary software to guide the process.

This isn’t sour grapes, by the way. Our own center was approached as the first choice place for a proton beam facility by a private group wanting to build in Seattle, but our radiation oncologists saw that the cost couldn’t be justified by the limited group of patients best served by protons. They concluded you would need to market it to people beyond its demonstrated place, and that’s exactly what’s happening." - http://cancergrace.org/topic/radiation-vs-proton-radiation#post-1262315

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
Reply To: They opened her up and the closed her up

It sounds as if the doctors are talking about possible non resectable but curable nsclc. On the subject of stage III unresectable nsclc Dr. West starts a podcast this way,
"..you can get a sense of the variability in how different lung cancer experts share the same set of data but have their own interpretation and style for cases where there are significant gaps in what the data tell us." http://cancergrace.org/lung/2011/08/30/unresectable-stage-iiib-nsclc-cas...

On unresectable nsclc from the drop down menus, http://cancergrace.org/lung/category/lung-cancer/non-small-cell-lung-can...
On proton radiation I found this in a Grace search, http://cancergrace.org/forums/index.php?topic=788.0
On chest radiation in general from the drop down menu up top, http://cancergrace.org/radiation/category/chest-radiation/

I use the search feature most. Just put a term or two of what you're looking for into the search box. Depending on the type of internet browser on your computer, you may need to log off Grace to get the results. This isn't ideal but the search is terrific.

Hope these links help,
Janine

malki13
Reply To: They opened her up and the closed her up

Thank you for the responses:

The geriatrician /oncologist specialist told us that the cancer is in a node but still localized. I don't understand that, He also discussed that there are so many treatment options for non smokers and that my mom should not be depressed that one treatment option (surgery) was not the best one. Me added that he believes our surgeon did a very compassionate thing by not taking out the lobe. He said some surgeons might have without consideration of the recovery and said well figure out the other pieces with radiation etc. that's when he referred to it as finding a lymph node positive and called it localized not metastatic . That sounds inconsistent with what I thought. He described radiation with a specific shot of chemo together as the suggested treatment and explained that this is vey good. Could anyone weigh in on how this is a called localized with node involvement.? Or any of these therapies?
Malki13

dkm5859
Reply To: They opened her up and the closed her up

Hello, Malki 13. I just want to mention before going on that I / my family had a very similar experience that you and your Mom just experienced. To clarify...it is also my Mom who went through the surgery..she in fact was opened twice within about one month. I also want to emphasize that not all people's cases are the same, outcomes vary greatly and my Mom is by no means 'out of the woods' yet.
I do not know what type of cancer, the exact staging, where exactly the primary tumor is located and how many nodes are involved with your Mom. With that stated I will tell you that my Mom's 'journey started in early May 2012 with a X-ray for a pre-surgery screening for a knee replacement.
She was scheduled for a VATS and they encountered spread in some nodes and sewed her up. We were told that given the location of her primary tumor in the outer edge of the ULL that VATS would only be needed but they do 'test' biopies of nodes to determine possible spread. She had three or four nodes involved on the same side of the primary tumor. She was at least Stage 3A adenocarcinoma.
The doctors stated only chemo and radiation. We seeked a second opinion immediately just to get a confirmation only if that was what we would only end up getting.
We did not. University of Penn told us that they would remove the ULL and the involved nodes. They would start the chemo(carbo platin and taxol), IMRT radiation and proton.
She was told that this would be pretty agressive and some would say extremely agressive. She was fully opened twice and then started her treatment regimen within a span of about ten weeks.
Well... it was very rough by the end of her treatment plan and it has been a long recovery but so far every scan has been very good. I do not know exactly how and or why but so far she has been improving slowly but steadily and apparently cancer free...at least so far per her scans and some of the obvious symptoms of cancer. I hope with all my hear that your Mom & others can be free from

dkm5859
Reply To: They opened her up and the closed her up

Hello again, Malki13. I do not want to possibly be out of line in any way and I am not a professional but depending on the exact location of the primary tumor, exactly where & how large the affected node(s) might be she might still have surgery on the table in my book. One BIG warning...this is HOTLY debated.. that is ...if and excactly when is surgery a good viable option... also it depends on the performance status of your Mom... age, other health related problems and if any of these are serious in nature / complexity but if I remember your posts...she has one primary(depending where in the lung) and the one node affected on the one side...I think the surgeon in Penn that we have would at least consider her for surgery BUT like I said I am by no means an expert and do not have all the facts. All the people we spoke to told us that surgery is the gold standard IF it can be done depending on all the factors involved. I would at least call a major cancer center and inquire to seek a second opinion but do not do so soley by what I just wrote. Look into it for yourself and others here might help in some other way. I can only go by what our experience has been so far and the people we know about. Please take care and God bless!!

catdander
Reply To: They opened her up and the closed her up

Don't misunderstand lymph node with nodule. A nodule is a mass and a lymph node is part of the lymphatic system.
Here's a good blog post on lymph node involvement. http://cancergrace.org/lung/2010/11/14/distinctions-among-n1-node-involv...

malki13
Reply To: They opened her up and the closed her up

Thank you dkm...It is so nice to learn that your mom is doing well :))...just to clarify we are at sloan memorial in NY. Our surgeon is internationally known and an American leading expert on lung cancer particularly mesothelioma...I say that only to
address being in the major cancer caner...that said the best can always be wrong or make mistakes.
i am wondering how old your mom was when her treatments first began...We learned that basically the doctor found multiple nodules in the left lung....the primary tumor is the left lobe bottom middle...I think it was explained that its localized in that its in this lung but while the doctor would not to commit without pathology I think from his 45 years in doing this that he believes the pleura is malignant. I would sleep better if a doctor would say you cant see that without testing. But I understand that this makes it a game changer and in his experience a reason not to remove the lobe. this evening he said she will definitely need chemotherapy.

There is no way my mom could go through two surgeries and right now she is having pyschotic episodes in between normal crossword puzzle afternoons ...so the pathology will be back in a few more days. BAsically I think we are looking at a spread from the primary tumor downward and into the rest of the lung and pleural fluid....that I pray can just be fluid of no importance.

catdander...thank you for the information reading it now...

Dr West
Reply To: They opened her up and the closed her up

I would definitely want to defer to the doctors who are seeing all of the details of her case, but if there are pleural nodules, this is considered advanced/stage IV NSCLC, regardless of lymph node involvement. This may get to the issue of why chemotherapy is being recommended -- systemic therapy is the cornerstone of treatment for advanced NSCLC -- but I think the role of radiation here needs to be carefully clarified, as it would not be associated with a survival benefit for stage IV disease (if cancer in the pleural space is present).

Another question is still how quickly things are progressing. It sounds as if there is enough ongoing progression now that treatment is indicated, but if it's actually a slow-growing process, there is a real risk that the treatment could be worse than the disease and poses more of a risk to her, especially at 85 and somewhat frail, than a slowly progressing cancer.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

Thank you for that information. How does one determine progression? Would that information be obtained from the pathology? Also it seems that I can't get a consistent answer. The surgeon will not say anything other than at least stage 3 but told my moms internist today that he believes its stage 4. The geriatrition from SLoan stated that the pleura is not believed to be malignant. and that this is localized with node involvement. He said this without pathology reports. I have to assume he read my moms chart before speaking with her so in either event I would like to prepare myself with the right questions and knowledge as best as I can.

He seemed very hopeful for her but everything I rad about malignant pleural effusion seems very bad. Is there hopeful opportunities even with that?

JimC
Reply To: They opened her up and the closed her up

Malki,

Progression is noted by comparing the visible cancer on scans over a period of time, not by pathology. If successive scans taken over a period of months show that nodules have increased in size, or new nodules have appeared, then progression has occurred. The amount of difference noted over that time period indicates whether progression is slow or fast.

The staging cannot be finalized until it is determined whether there are malignant pleural nodules or a malignant pleural effusion. If either is present, it is stage IV, if not it appears to be stage III. You may want to find out whether any of the pleural nodules or the pleural fluid has been tested for the presence of cancer cells.

Prognosis depends on whether the cancer is slow-growing and/or whether it responds to treatment. The growth rate is determined by watching it on scans over time. Some patients respond very well to treatment, others do not; the only way to find out is to begin therapy and then rescan to judge the results. Although generally the prognosis for stage IV disease is not good, more and more patients are living well beyond the medians.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

malki13
Reply To: They opened her up and the closed her up

Thank you Jim. The only problem with those scan s is that they didn't pick up anything that seems to be a problem and the reason he didn't proceed with surgery . So how will scans be helpful?

JimC
Reply To: They opened her up and the closed her up

Scans can image very small nodules, so that if they do progress to a clinically relevant size, they should be visible on the scan. If they stay small enough that they don't appear, they are probably not clinically relevant. Of course the scan will also show whether there is any progression, and at what rate, of the primary tumor.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

dkm5859
Reply To: They opened her up and the closed her up

Hello again, Malki13. To answer your questions about my Mom: She was (70) when dx'ed ..almost 71 technically... and had other health issues at the time but the doctors stated her performance status was good enough to proceed. MSK is definitely a great place to be with a very good reputation I hope everything works very well. I wish you and your Mom all the best.

Dr West
Reply To: They opened her up and the closed her up

Yes, to underscore Jim's point -- if you aren't seeing clear progression on scans over a significant time, I wouldn't consider it to be clinically significant progression. There is no formal definition, but I'd say that if you can't see progression or need to squint to see a millimeter of change over 4-6 months or longer, this represents a very indolent process, for which there is a very real risk that the treatment could well be worse than the disease, no matter what the stage technically is.

There are a minority of people with an advanced cancer, as proven by biopsy, who still do remarkably well for a very, very long time, often on no treatment. If they are doing well on treatment or after some intervention (surgery, radiation, etc.), I think it's very often that they are doing well despite and not because of the intervention they've received -- they'd be doing as well or better if they had never had that intervention because the cancer wasn't nearly as much of a threat as it was reflexively presumed to be.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

OH GOSH..ok so the cancer cells could be so non threatening right now that chemo might make things worse...I understand this...
Many nodules...pleura not diagnosed yet... found in the lung represented a reason not to take out the lobe. I understand this.
What I dont understand is the two together. If these nodules were so microscopic that they didn't get picked up on the ct scan...the test that will be used for progression...then why didn't they take out the lobe? Or why ......if these microscopic nodules could possibly represent no immediate threat....why didn't they take out the lobe? and instead doc says she will definitely need chemo...?

thank you

Dr West
Reply To: They opened her up and the closed her up

Because taking out good lung when there is zero chance that it will get rid of all of the cancer is a very bad idea -- you get all of the negative effects of a surgery and no anticipated benefit. There is no point in taking out a lobe or a lung if the cancer can still grow elsewhere. And if the cancer is slow growing, there is no reason to take out the lobe.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

I understand. Thank you. How will we know if Chemo will make things worse before we try chemo? Will the final pathology give more information as to these tumors and rate of progression?
Thank you

JimC
Reply To: They opened her up and the closed her up

malki,

Chemotherapy always has some side effects, but there's no way to know in advance how bad those side effects will be in one particular patient, and no way to ever know if it is the chemo successfully controlling the cancer or it is just a slow-growing cancer.

As far as the pathology, for the most part it won't tell you, except that the grade of the tumor may give an indication of how aggressive the cancer is likely to be. As Dr. West has written:

"[T}here is also evidence that, stage for stage, patients with poorly differentiated cancers don’t tend to do as well as patients with better differentiated cancers. This is probably because they’re also more aggressive. The cancers that are so chaotic that experts can’t determine the histologic subtype are also likely to grow and divide very quickly, and be far less likely to have a specific mutation like EGFR or an ALK mutation driving them — instead, they’re driven by a combination of many, many mutations."
- http://cancergrace.org/lung/2010/03/12/nsclc-nos-poorly-differentiated-n...

He has also discussed tumor grade here: http://cancergrace.org/lung/2007/03/20/tumor-grade-and-prognosis-in-nsclc/

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: They opened her up and the closed her up

Exactly. There is no way to know with certainty how any person will tolerate chemotherapy or how well or poorly a cancer will respond. However, there are a few general ideas to follow:

1) People with no symptoms can only feel worse from treatment. That may be justified if there is a potential for cure, but it is of much more dubious value if you're talking about a non-curative treatment that can't make you feel better (if you have no symptoms) but can definitely make you feel worse.

2) Chemotherapy tends to be most effective against faster-growing cancers and less effective against indolent (slowly growing) ones. A person also has "less to lose" by pursuing aggressive treatment when it is anticipated that the cancer will be increasingly threatening quickly, but has a greater risk of the treatment being worse than the disease when the cancer is indolent.

3) Though there is a lot of variability across individuals, chemotherapy tends to be better tolerated in fit people with fewer medical problems, and younger patients tend to have fewer side effects than older patients.

4) Patients with more medical problems have a greater chance that their other issues will be a bigger problem than the cancer over time, especially if the cancer is slowly growing.

This means that it's very wise to be judicious about the risks of over-treating an older person with many medical problems and a slowly growing cancer. But weighing the anticipated risks vs. benefits is a complex issue that should be done by the people directly involved with a person's case.

Good luck!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

Thank you both Jim and Dr West...particularly for taking time to point out the numbered points. Thank you so much.
The doctor (geriatrician/oncologist ) here told us that the pleura was negative. No one has given us a final pathology yet but it appears to be "locally advanced " Doe this preliminary change often.? Also I understand these very important points. I understand how treatment can effect versus not effect based on cancer types with age. Do we start the treatment? What good protocols should we look out for or questions are important for us to know to protect a good best under circumstances outcome?

Thank you again
Malki13

Dr West
Reply To: They opened her up and the closed her up

I think the key is to get the final staging and hear the recommendations from her doctors. It is absolutely critical to get the input from the full pathology review, and yes, it's not uncommon to learn new information from that compared with what was previously seen on scans or at surgery.

We can't begin to suggest what would be an appropriate treatment here. First, you and we don't have all of the information to know what the situation is, and then, as I mentioned above, her general health, other medical issues, and pace of the current cancer are very important variables that go into the recommendations, but we don't have those insights available to us.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

Oh absolutely...I would never expect treatment recommendations...especially under these conditions. I am a proactive forward thinker type of anxious individual and want to be informed best for mom based on what has been shared here when we do speak with her doctors. Too bad about the pathology can change...we were hoping for the preliminary information to be a small victory.

Regarding the pace...is there any accuracy in assuming its not indolent since lymph nodes did not show up in April on the Pet scan and now its found to have cancer?

thanks again as always,
Malki13

carrigallen
Reply To: They opened her up and the closed her up

Oftentimes, surgeons will repeat a CT or PET/CT before a planned cancer operation, because by the time of the procedure, the original imaging is >45 days old. Nonetheless, it is still quite common for mediastinal lymph node(s) to be positive after a careful surgical inspection, even if the preoperative PET/CT or high resolution plain CT scan did not suggest any. I would guess at least 30-40% of lobectomies for lung tumors do turn up positive lymph nodes not well-seen on prior imaging, if a comphrensive mediastinal lymph node dissection is done.
I think that speculation about the pace of cancer based on prior imaging in this situation is not that helpful. I would be curious what all the reported pleural nodules were, if not cancer. In general, it is common for cancers with positive lymph nodes to be less indolent or more aggressive. Hope this helps.

malki13
Reply To: They opened her up and the closed her up

Thank you Dr Creelan,

Yes they did a ct one week prior showed no change from April. Is it common to do a frozen section on all pathologies before they are sent to final pathology?

Malki13

malki13
Reply To: They opened her up and the closed her up

what I mean is on all samples taken...wedge...pleura etc

Dr West
Reply To: They opened her up and the closed her up

It's common to do frozen sections on at least some, but not necessarily all, of the different areas of material sent to pathology at the time of surgery. It's understood that this is just the "quick and dirty", provisional assessment of the pathology, not the final word that comes from more detailed assessment later.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

Thank you ...just making sure that they have definite reasons to believe nodules seen and lymph nodes swelled were something conclusive in order to not proceed with surgery.. I would love to know that they are in deed an inflammatory thinkg and are not cancerous in the final pathology...but thinking that they must have had some kind of confident preliminary readings...waiting is very hard for a little anxious daughter.

JimC
Reply To: They opened her up and the closed her up

Malki,

I understand; waiting for results is often one of the most difficult aspects of the cancer journey.

Hoping for good results from the final pathology.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

malki13
Reply To: They opened her up and the closed her up

ok the results are in...no malignant pleura....multiple nodules in the left lung were tested and found to be cancer. When I asked if the lymph nodes were found to be cancerous he told me they were not tested because of the multiple nodules. I have no idea what that means..unless lymph node involvement means spread and if multiple nodules mean that already ...then you don't test lymph nodes? However we were definitely told no metastisis... He said it was stage 3.... when I asked a or b or does that not make a difference.... he said it does not make a difference. However it seems to make a difference..so of course I'm confused. I know that this surgeon told my mothers doctor before the path came in final that he believes it will be stage 4 so Im sure he was surprised by the pleura being negative.

Any suggestions for a first line of treatment? Where there might be reliable info regarding this stage? Also mutations not done yet.

Thanks
Malki13

dkm5859
Reply To: They opened her up and the closed her up

Hello again, Malki. Again...I am no expert but if I am interpreting correctly what you have written regarding your mom's situation with this most recent post it appears she has what is normally referred to locally advanced lung cancer. It also appears she has to deal with multiple nodules that are on the same side of the chest. A cancer dx is never good but it usually better than receiving a Stage 4 dx. The treatment options still depend on many factors yet...tumor load,,, that is the total number and or size of each one, type of cancer, if any muttations that can be targeted, exact location of tumor(s), and performance status of your mom. Treatment also likely will depend on what your mom may or may not want to do regardless of all the other factors. Cancer is normally so troubling...I sometimes you the following analogy... sometimes it is like trying to squeeze a handful of jello and expecting to be able to control all of it and none of it making a mess on the floor. I'm sure it is maddening sometimes for most everyone..especially with medical providers who try to cure or at the least keep stable those who are afflicted with this. Please take care and God bless.

malki13
Reply To: They opened her up and the closed her up

Thank you :)...yes we definitely felt better knowing the pleura was not malignant...wile at the same time still trying to recover fro a surgery that did not happen and presented a cure from apparent localization and not advanced. Right now its difficult to determine symptoms because of the surgery ...which for her 87 years Im remarkably impressed with how well she is doing and looking...however she is very swollen..feet and legs look like tree trunks and her legs are very very thin...this is impacting on her walking recovery....and so when she does walk its harder for her because she is carrying around 13 pounds of fluid....however prior to surgery she had no glaring symptoms...no persistant cough...no chest pain...bloody cough...however did have productive mucous cough for years...

Just trying to find some hopeful options....
Thanks again
Malki

Dr West
Reply To: They opened her up and the closed her up

There is no standard approach for her particular form of cancer. Having multiple nodules on the same side is often seen with bronchioloalveolar carcinoma (BAC), now commonly termed lepidic predominant adenocarcinoma (LPA) if it is multifocal (as it is here). This is often a slower growing process that is relatively unlikely to spread outside of the lungs.

The issue here that is worth considering is that the stage groupings are based on a collection of patterns that share a similar prognosis. However, the biology of these scenarios is not always the same. Having multiple lung nodules in the same lung is really quite likely to be a biology that isn't curable, I'm afraid. Sometimes, if slow growing, it's possible to remove the entire lung with curative intent, but that's obviously not the plan here, nor would I think it should be in her particular case.

The default option for most patients with stage III NSCLC is a combination of chemo and radiation, but hers is stage III with a different biology than most. Based on what you've conveyed about her particular case, I think that systemic therapy such as chemotherapy or, if indicated by her molecular testing results, a targeted oral therapy, would be the cornerstone of any treatment.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

malki13
Reply To: They opened her up and the closed her up

Thank you Dr West...I'm sorry but I think my 10 th grade biology has just met its match with some of what you wrote. Would you mind helping me out with the slow growing versus the biology explanation. I think all I was able to get is one scenario would be good but then something about what I wrote indicates it's not in her case. One thing I can say is that I asked 10 different times when the first ct biopsy was done if this was BAC...after being corrected (accurately) that it's not called BAC anymore ....he said no and then no again. I asked the surgeon today if this was well differentiated poorly etc...he said it wasn't described. He.confirmed that it was adenocarcinoma.

Thank you...
Malki13

malki13
Reply To: They opened her up and the closed her up

Just to add... The reason I asked if it's BAC is because 10 years ago when the 2cm spiculated nodule was found....multifocal lesions was mentioned unlit was mentioned as reason to watch not resect... Careful monitoring ...believing to be possible inflammatory process but doctor pointed out could also be bronchioalveolar so careful monitoring was crucial.

Dr West
Reply To: They opened her up and the closed her up

I suspect that whatever they're calling it, as it sounds like it's behaving like what we would consider characteristic of BAC... too often people get caught up in the terminology. What someone happens to call it is less important to me than how a cancer behaves.

My point about the biology of a cancer is that staging really has to do with just grouping together sets of patients who have a similar prognosis. For instance, imagine the following groups (this is imaginary numbers, for purposes of illustration):

A) half of patients have died after 6 months
B) half of patients have died after 1 year
C) half of patients have died after 3 years
D) half of patients have died after 5 years

Now suppose that among the pateints in group C, 90% of them have a pattern where they are likely to die after about 18 months if they aren't cured, but they are likely to live more than 5 years if they're cured, and the chance of being cured is 30%. The other 10% have the same median survival of 3 years (half have died by that time), but they really don't have a curable disease and tend to have a higher chance of slowly progressing, ultimately dying after about 3 years. They can all be categorized into as the same stage, because they have a similar prognosis, but it's a mistake to presume that the right treatment for the slow-growing, incurable patients is the same strategy that is optimal for the faster-growing but potentially curable cancer.

BAC is often slowly growing. It's not likely to be cured when it appears as multiple lung nodules throughout one lung. There is some variability, but most often, even when patients have a lung removed, the same cancer appears a few years later in the other lung. Sometimes, the entire lung is removed for a few slow-growing nodules, and patients can do well, but they might have done better with their slow-growing cancer and their lung left in.

There's no clear best answer here, but the right choice isn't just based on stage.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

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