They opened her up and the closed her up - 1264524

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

Thank you, I understand. What does a patient do to seek the appropriate treatment? I'm getting an understanding that an oncologist like yourself with special understanding of this type of cancer is needed otherwise mistakes could be made. When they say not curable but treatable does that apply here? Also they found two nodules on the right lung that were smaller in June on ct scan than in April. Doctors agreed were most likely inflammation because of the resolve. Given the understanding of BAC and how it doesn't show up on scan properly...combined with the left lung surgery findings ...could this apparent and agreed upon inflammation ( because it got smaller) actually be malignant nodules instead?

Thank you so much fir your time and explanations
Malki13

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

Pathology results I think are bad.... Invasive mucinous adenocarcinoma papillary predominant 80% with acinar 20% and lepidic 10%. And micropapilaary 10% patterns. Negative for ttf-1 and alk. Clinical correlation is needed to exclude metastasis from other sites.

That's new.... May hoops said positve ttf-1. Left upper lung resection prominent peribronchiolar metaplasia. Non necrotizing granuloma

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

Anything that shrinks over time, while not on treatment, is not consistent with cancer, and I would suspect inflammation or infection.

I would suggest you read this post I wrote several years ago that highlights the primary importance of how a cancer behaves, vs. the terminology used to describe it.

http://cancergrace.org/lung/2008/08/13/path-vs-clin-picture/

No matter what it's called by a pathologist, if a cancer behaves in an indolent fashion and/or has a low level of metabolic activity on PET scan, I consider this to be more telling than what a pathologist calls it. It's like being told a dog is wild and aggressive, but it's just sleeping at your feet. My mother used to always say "believe half of what you see, and none of what you hear", and I think the spirit fits in weighing the evidence about cancer. If what you're seeing doesn't fit with what a pathologist tells you based on observing it under a microscope, the observed behavior gets priority.

As for finding a doctor with expertise, many lung cancer experts have a lot of experience with indolent cancers. You just need someone with thoughtful judgment, whose recommendations make sense to you.

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

I think you're mom is brilliant...Dr West..does this cancer sound like an indolent behaving cancer to you based on these new results?

Malki13

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

Based on the fragments I've heard, I believe so -- but that assessment really needs to be made by someone who has the opportunity to review all of the scans and other information from directly assessing the patient's case.

-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

Ok ...thank you hugely ....we will do just that. My sister believes in the theory of biopsies and surgery can awaken things that would have stayed quiet otherwise. Is there any medical basis in this!.?

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

It's extremely rare that seeding occurs (the transfer of cancer from a needle or surgical site to another area) but it does occur. In the 5 years on Grace I've read of one or 2. There isn't though any data or studies suggesting cancer is awakened by surgery or biopsy. Probably that comes from the fact that surgery or biopsies are only done when there is really a problem so it isn't unusual to find the problem.

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

Thank you :)))

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

Yes, that is almost completely myth. As Janine noted, there are very rare (<1 in 1000) cases of seeding from a biopsy of lung cancer (a little more of a concern from kidney cancer or mesothelioma), but it's not enough of a risk that it should lead people away from getting a biopsy or surgery when it would otherwise be indicated.

-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

happy fourth!!

Ok my moms pathology says "invasive mucinous adenocarcinoma". 60% papillary etc. I have read all of the articles by Dr West suggested. Those that were suggested by anyone who responded and particularly the last one that Dr West asked me to read regarding pathology. Wonderful articles that truly speak to the lay person like myself...
I found a comprehensive pdf on line entitled Pulmonary Adenocarcinomas Subtying and Differential diagnosis.
Under Invasive mucinous adenocarcinoma it states " most tumors formerly designated as mucinous bronchioloalveolar carcinoms are part of this novelty." As Dr West pointed out so accurately from my prior post...this explanation goes on to say " these tumors show a predominantly lepidic growth pattern. however they invariably also show papillae and/or micropapillae and invasive acinar structures are frequently present" ( also true with my mom.),.but what is confusing is that my mos is not lepidc predominantly..so can it still be ledpic pattern? it goes on to say "tumor growth is frequently multifocal" (mom had many modules outside of lobe where original tumor was found) According to this pdf immunochemistry is ttf-1 negative and Napsin A negative..with ck20 cdx2 positive.. surgical biopsy shows ttf-1 negative and Alk negative....original Ct shows Napsin A positive and ttf-1 postive.

From what I think I have learned so far... mucinous Bac bad non mucinous Bac better..So I am concluding my moms is mucinous Bac ..bad..BUT a potential indolent process?...which is not what I thought mucinous BAC was. SO can you have mucinous BAC and it still be an indolent growing cancer at this time that perhaps the oncologist would suggest holding off on treatment? She also has all of these chronic fibrous pleuritis which for my elementary understanding doesn't sound good either. Any clarification available from an educational standpoint consistent with this forum would be truly helpful...thanks so much
Malki

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

Any cancer can be indolent or aggressive no matter what that type or subtype normally is. As an example my husband has squamous nsclc moderately differentiated which is usually fairly aggressive. His is/was quite indolent compared even to the most indolent BAC. So your mom's cancer can be indolent and she may indeed be able to break with tx and watch closely with CTs.

I'm not so sure about pleuritis except it can cause quite a bit of pain and may also cause PEs. I hope your mom's can be cared for and in the meantime her pain controlled.

Happy Fourth!
Janine

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

Thank you Janine....what are PEs. And interesting you said pain.....my mom is now 11 days after VATS and she in in terrible pain. I wonder if it's no longer from the surgery and due to this..hmmm.

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

Oh also ...sorry but what is break with tx...?

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

I will add if I didn't already...(I'm getting so confused with what I wrote here and what I wrote to my siblings)..I'm the 24/7 caregiver for my mom wrote now while she's high on Percocet...so I'm on overload....anyway....moms ct scan showed left lower lobe tumor at 4cm in April found incidentally and it was exactly that size when it was wedged out...so I think that fits with what you and Dr ?West have been sharing with me

Thanks Malki

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

I understand the stress you must be under and I'm so glad to be a part of helping out.
PE is pleural effusion which I think you've mentioned before and often goes along with pleuritis. though pleuritis isn't often mentioned on this site. http://cancergrace.org/lung/2007/03/17/intro-to-pleural-effusions/ Both can be quite painful so it's probably a good thing shes high on percocets. I'd just make sure she stays on top of the pain (get and keep the pain under control). If you let the pain come back full on before re-medicating it's much more difficult to get it under control again. It may be that she needs a time released pain med then she can use percocets as breakthrough meds. http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer-...

break in treatment, treatment break, stop systemic treatment until progression.

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

Malki,

My key point of the post that clinical behavior is more important than the pathology description speaks directly to your question. Another point is that cancers can have different appearance under the microscope and even somewhat different behavior in different areas of a tumor or different parts of the body. So again, remember to trust the behavior of the cancer that you're seeing in real life rather than trusting what a report about the appearance of a tumor under a microscope or the trends of how such cancers tend to behave. As Janine's husband illustrates, cancer behavior is quite variable, including cancers that are all put into the same category.

-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

so...im looking at this pathology report and the only diagnosis is the original lung mass "proven mucinioid producing adenocarcinoma.

6 specimens were submitted...besides the one cancer....nothing else says cancer or malignant

pleura chronic fibrous pleuritis..no visceral pleural invasion from the 4 cm tumor found to be malignant that we already knew was. peribronchiolar metaplasia upper lobe...no tumor seen...focal respiratory bronchiolitis...non necrotizing granuloma. The tissue within fissures ( no clue what that is) =pleural adhesion and lung parenchyma with minute meningothelial nodule.

Am I wrong? The doctor's fellow explained this very clearly to me...nothing on this report says multiple nodules...at least ones that are cancerous. Am I reading something incorrectly? If not, could the recommendation possibly be wait for another ct scan. I cant find the cancer on this report other than the original one we went in to get rid of. . Does anyone else see it?
thanks
Malki

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

Legally, as well as in terms of time allocation, we really can't delve into interpreting individual scan or pathology reports. I'm sorry, but you'll need to clarify her findings with her doctors to clarify the way to best interpret her current situation.

-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 ok .. I understand. Thank you
Malki13

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

We haven't seen a medical oncologist yet. However the geriatrician/oncologist who was practicing as a geriatrician Friday said that my mom has the EGRF mutation and that right now his advice is for my mother to put off any treatment ideas and to concentrate solely on getting better every day by doing physical therapy with medicare home help etc and to stay away from doctors and hospitals. She is weak right now since she had 5 more days in the hospital after the original 7 days for the surgery. She was filled with fluid and it went to heart. But she is good with that now. Just weak from both hospitalizations..Deconditioning is not something to be undermined. According to pathology there is no visceral invasion and no malignancy in anything other than the original 4cm tumor which was not resected just biopsied through the tumor...so cancer still there. I don't know where these cancerous multiple tumors are because nothing on the path says malignant that was tested other than the original tumor...but maybe the oncologist when we find him/her will tell us where these multiple malignant tumors are....I would think they would be written about in the pathology but all there is is inflammation .....so for now we are focusing on getting my moms physical and emotional health back to her baseline one day at a time and redo pet/ct scan in three months.

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

The fact that her cancer has an EGFR mutation means that she has a high probability of responding well to an oral EGFR inhibitor, and there's a good chance she'll tolerate it well, whenever that gets started.

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 imagine much has been written about this...would you either be able to comment or direct me to understanding how this oral inhibitor works versus chemo because the doctor was really clear that she would not be a candidate for chemo ...at least for now...given her weak status ....they discharged her with a lot of fluid left from the surgery.....So needing the additional hospitalization time to resolve that fluid I think suggested to the doctor that my mom might not be able to tolerate treatments...although he did seem optimistic as well at this mutation information.. .but I don't understand how this oral inhibitor is different from chemo in terms of tolerance and effect. Does it come without side effects? How is it administered?

Thank you

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

Tarceva is a pill taken orally and is most effective for those with an EGFR mutation. We have 270 blogs posts and over a 1000 forum post on the subject. I think it's time to categorize some of the most basic but for now read the ones linked then search using specific terms of interest. Let us know when you need help.

From a previous thread Jim says, "The two most common side effects of Tarceva are rash and other skin/nail conditions, diarrhea and fatigue. Many people find these symptoms quite manageable, while for some they are more problematic. My wife developed a rash within a couple days of beginning Tarceva, and suffered from it throughout her course of treatment, necessitating frequent interventions and one temporary dose reduction. Luckily, the dermatologist she saw is one of the leading experts on these types of skin issues, and Dr. Lacouture shared his expertise with the GRACE community here: http://cancergrace.org/cancer-treatments/files/2011/09/dr-lacouture-on-s...
You can search this site in general for “tarceva side effects” or more specifically for a particular side effect such as rash; there are many archived posts here." http://cancergrace.org/topic/tarceva-side-effects#post-1261819

http://cancergrace.org/forum/cancer-treatments-symptom-management/egfr-i...
http://cancergrace.org/cancer-treatments/2009/03/02/egfr-basics/

All best,
Janine

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

Janine's right that we really need to rely on people looking for information themselves. There's so much information here that we need people to look for it. Admittedly, there's so much information that it can be hard to sort through it, but a reasonable search needs to be the starting place, so that you can focus on follow-up question that haven't been covered over and over and over again already.

-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

Yes! That's what I meant I suppose much has been written...could you direct me to the information

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

Thanks Janine!

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

Hi again,
Dr West you mentioned that if my mom has the mutation that there is a high probability of her responding to it but I just read your article on this related to BAC. You mention that this mutation inhibitor sees great response with Non mucinous BAC but poorly with mucinous BAC. My mom is diagnosed with invasive mucinous carcinoma. Is that mucinous bac that wont respond or am I reading something invorrectly?
Thanks

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

People with mucinous adenocarcinoma are less likely to have the EGFR mutation than people with non-mucinous adenocarcinoma/BAC, but it's appropriate to check for the mutation anyway -- if she has it, the probability of a response to an EGFR inhibitor is high, regardless of its appearance under the microscope. And people with mucinous adenocarcinoma may have a significant possibility of having other driver mutations like ALK or ROS1, which are each likely to respond to the oral agent XALKORI (crizotinib).

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

oh ok great...she doesn't have the ALK but I will check into the ROS1....

thanks ...as always

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

well.. unfortunately we have gotten an incredible amount of misinformation and now from the reading and posts Im pretty sure this is more dismal. So here goes.

Surgeon said :EFGR NEGATIVE KRAS POSITIVE. after all of my reading I know this is not good. He said he did not take the tumor out because there were "scattered nodules on the lower left lobe" ...biopsy showed this part to be malignant (this was in addition to the 4 cm mass we already knew about). No spread to anywhere else. (sorry but I still cant see then why the lobe is not out of her!). I understood this when it was scattered outside of the lobe...but not in the bottom of the lobe. He called it a diffuse tumor in the left lower lobe. I know diffuse is not good either.

so the left lower lobe 4 cm tumor malignant and the lower lobe scattered tumors 1mm-2mm are all identified as invasive mucinous adnocarcinoma. And according to the pathology since there is no other spread if the left lower lobe was not there...neither would the cancer. The surgeon said ...when asked why he left the lobe...."because it was a judgment call made at the time of surgery and at that time it was decided that it would not have benefited her treatment.

I dont know how to find a treatment plan for her now with her being so weak post operatively (3 weeks). She is a concentration camp survivor and I think she doesn't have it in her anymore. She always told me that you have to live with hope and I believe thats how she survived 60 years ago but she cant find it now...

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

I'm sorry to hear how difficult things have been for her. Not being a part of her team, I can't make any recommendations, and I'm not sure that any treatment right now is a good idea or would be helpful given how weak and thin she is. But I do think it's not helpful to perseverate over the value of taking out the lobe in this situation. Her case sounds a lot like "pneumonic BAC" extensively involving a lobe with mucinous BAC (and known for having a high probability of a KRAS mutation):

http://cancergrace.org/lung/2009/01/02/prneumonic-bac/

Unfortunately, what typically occurs after surgery is that new areas of disease appear in other parts of the lungs very shortly after surgery. This is a very difficult cancer to manage, and I can assure you that a lobectomy isn't the key to a wonderful outcome. I wish there were an approach that offered that, but I don't think that she missed out on a spectacular opportunity.

Again, I'm sorry about her challenges now. It's all too believable.

-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,

What part of what I said makes it sound like pneumoic BAC? Also are you saying to expect new areas to appear? Or did I write something that says new areas. All I understand from the surgeon is that the nodules are only in the left lower lobe and nowhere else is there any malignancy.

Thank you for your kind words.

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

I don't know exactly what this is, which is why it's important to rely on people who actually see your mother, her scans, etc. rather than people like me who are peering in a keyhole and trying to imagine the room.

Pneumonic BAC is when a lung lobe is very extensively involved with mucinous adenocarcinoma/BAC. You described a lobe that had lots of satellite nodules throughout it. This is a situation in which it's extremely unlikely that removing the cancer will actually lead to all of the cancer truly being removed. And if you do surgery that doesn't remove all of the cancer, some people say that's basically just a large biopsy -- it's not really likely to help in a meaningful way against the cancer to remove 90% of it, but you undertake all of the risks from a surgery.

-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 ...of course you don't know anything exactly, I would never hold you to a claim...I appreciate your time and willingness to share any information that is better than my own background knowledge and understanding. Just to clarify if the upper lobe does not have malignancy or tumors, just the ones on the lower part is this still defined as extensively involved?

thank you again....

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

I would urge you to speak with her doctor. I'm sorry, but I would need to see the details to comment.

-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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