NSCLS reoccurrence after 5 yrs- Tarceva, progression, biopsy? - 1289809

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snickerdoodle531
NSCLS reoccurrence after 5 yrs- Tarceva, progression, biopsy? - 1289809

My question is should I have an open lung biopsy on a tumor less than 2 cm? How do you know when to wait and see, especially if the doctor is really pushing the surgeon?

Background: Jan 2010 diagnosed with NSCLC stage 2 and had right lower lobectomy with mutation EGFR exon 19 detected. I was declared cured with no further treatment and quarterly/biannual CT scan follow up reviews.

In Sept 2015 a 9 mm tumor was detected and my medical oncologist prescribed Tarceva 150 mg based on my previous occurence. The tumor reduced in size/stablized until Aug 2016 when 2 small perifissural nodules 5 mm and 6 mm as well as a 5 mm mammary lymph nodule.

Progression to Jan 2017 when all nodules are still less than 2 cm and my oncologist wants a biopsy or removal. The tumors are situated such that it cannot be easily radiated or biopsied by pulmonologist. My impression from the surgeon is that finding tumors that small is very difficult and it will have to be an open biopsy using his hands to feel for tumors that small. Because the oncologist wants it and doesn't want to wait further, the surgeon is willing to do it. I don't have much confidence, especially reading some of Dr. West's talks about Adenoma In Situ and the potential over treatment of lung cancer.

How do you know when to go with or against the oncologist? Is it worth it to have an open lung biopsy on tumors that small when even the surgeon is hesitant?

JimC
Hi snickerdoodle,

Hi snickerdoodle,

I'm sorry to hear of your apparent recurrence. Since the original time frame from 2010 to 2015 was so long, it is entirely possible (if not more likely) that this represents something different from the 2010 finding, which would make a biopsy even more valuable.

I assume that there is at least one nodule larger than 1 cm, which normally would not be that difficult to biopsy, but there may be other complicating factors.

I think this is the type of situation in which a second opinion could be very helpful, especially if the second surgeon is a very experienced surgeon who specializes in thoracic surgery.

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>

snickerdoodle531
JimC,

JimC,
Thank you very much for your response.

Are there any suggestions on how to ensure a good second opinion and an experienced thoracic surgeon? If there are, perhaps I should start it as a separate thread since I think many of us have that question. If one has the ability to choose among different providers, what factors would someone hold as most important?

I am currently being treated at an NIH Comprehensive Cancer Center although there are several other NIH centers within an hour's drive that I would consider for a second opinion. How would you weigh the choice of where to go and how to make contact with an appropriate doctor for an opinion? What would someone consider very experienced in this kind of surgery and how do you find out without insulting the doctor?

The reason I ask is because the thoracic surgeon that I consulted has more than 5 years of experience and went to an excellent school, yet he seemed dubious about the success of finding the tumors given their size, doing open lung surgery because of the insistence of the oncologist. I support the biopsy, especially since a few people whose opinions I respect have pointed out that I have been on Tarceva for a year and it may not even be cancer, never mind a mutation that responds to that therapy. But listening to him describe the process of "feeling my lung with his fingers for the tumors" makes me very uncomfortable. Am I being squeamish or unreasonable?

As my husband pointed out, there are advertisements showing regularly on TV and radio for hospitals in this area so it is obviously a business vying for clients. I am grateful that I have choices, I just hope to make the best choice.

Best wishes,
snickerdoodl

catdander
Hi snickerdoodl,

Hi snickerdoodl,

A couple of thoughts about your concerns. First of all it's good you're asking the right questions.

Don't worry about the surgeon or the oncologists feelings. These are by nature pretty hardy individuals with a keen sense of self. It's your life you're dealing with so it shouldn't matter anyway. Plus, most onc welcome a second perspective as the saying goes 2 heads are better than one.

Experience is important for open thoracotomy. A second opinion from a "dedicated" thoracic surgeon who practices at a major research teaching hospital that has a lung cancer specialty usually have the most experience. These places usually do a lot of clinical research.

It's possible it's not cancer. Surgically removing lung tissue certainly posses possible problems down the road when you need as much lung capacity as you can get. I wonder if your med onc wants the tumor out to prevent metastatic situation. That would be the only reason for moving forward with surgery. Otherwise a watch and wait is pretty typical. This is where having specialists on the ground looking at all the info and at you is needed. You having frank discussions with your team(s) will give you a better understanding of options, odds, and even personal needs and wants comes together to make plans that are best for you.

It's never easy or cut and dry.
Keep us posted on the journey.
All best,
Janine

cards7up
Where is the larger 2 cm

Where is the larger 2 cm tumor located? When they say open biopsy, could they mean via VATS and not thoracotomy? I personally would not have a thoracotomy to get to a biopsy. Have you had a PET scan? Though if it's AIS, it may not light up on a PET, but one should be done as it checks further than the CT.
It will depend on where you are as far as finding a top rated thoracic surgeon. Are you in the US?
Take care, Judy

snickerdoodle531
The thoracic surgeon

The thoracic surgeon described an incision in my ribs 3-4 inches, spreading my ribs, and inserting his hand to feel for the tumors so I am pretty clear that it is a thoracotomy.

I asked about VATS and robotic surgery and the response was they would use whatever means was necessary and he would remove as little tissue as possible but would remove any/all nodules.

This is the hospital that did my original lobectomy (lowest lobe of right lung) using the Da Vinci robotic system. While it was not the surgeon's first use of the system, I did not find out until after the surgery that it was the first time the system was used at this facility. The surgeon who performed has moved to a different facility so this surgery would be performed by a different doctor who typically does a heart and a lung surgery daily so is very experienced according to his nurse. I spoke with the office again and the oncologist is insisiting the tissue be removed. Part of me wonders if it is CYA since they never tested the new areas using either PET or biopsy before having me start Tarceva (which was the only option discussed with me when I was diagnosed.)

cards7up - I am not clear how to describe where the tumors are as the location isn't described in the reports. It looks close to the spinal column and the surgeon suggested it was close to the heart. The reports say there are a slight increase to the right upper lobe nodule currently measuring 1.4 x 0.9 cm, a stable subpleural nodule in the anterior right upper lobe measures 5 mm, and a stable 7 mm right internal mammary chain lymph node.

Who does one call to request a second opinion/consult? UCLA, City of Hope, and USC are all within driving distance. Do I just choose one and call to ask for second opinion consult? Is there a way to ask Dr. West for a second opinion?

snickerdoodle531
Janine,

Janine,
Thank you for confirmation.

I am resigning myself to the biopsy because I really feel it is important to confirm the cancer or whatever it is. I don't believe that a Lung Capacity test is even planned since the surgeon wants to remove as little tissue as possible.

I am becoming more concerned about the difficulty I have talking to my oncologist who may be an excellent researcher who bases his decisions on pure science (as described by the surgeon) but who really lacks in discussing options or rationale so that I as the patient have a clear understanding of what is happening and confidence in the treatment course. Sometimes I feel that my doctor would prefer I choose another provider since I don't simply accept his decisions without question. I am very ambivalent on the care I receive, sometimes feeling it couldn't be better or more convenient and other times feeling it is very lackadaisical.

It is wonderful to have a place to ask questions, find expertise, and share experiences. Thank you for your work on our behalf!

snickerdoodle

cards7up
Please get a second opinion

Please get a second opinion before agreeing to a biopsy this way. City of Hope and UCLA are both very good cancer centers. The surgeon you've already seen is not a dedicated lung surgeon but a cardio-thoracic surgeon. You would call either cancer center and ask for a second opinion. You have to sign a medical release form so your records can be forwarded. It sounds like you should get a new onc also.
Let us know how you make out.
Take care, Judy

JimC
One of the contributors to

One of the contributors to the GRACE site, Dr. Edward Garon, practices and teaches at UCLA. You can find his biographical information here: https://www.uclahealth.org/edward-garon

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
Like Judy stated, a second

Like Judy stated, a second opinion from someone who only performs lung surgeries is considered most desirable. A cardiothoracic surgeon like you said can be quite experienced performing heart surgery. A dedicated thoracic surgeon is experienced performing the more complicated lung surgery (practice makes perfect so the saying goes). Resigning yourself to a procedure is appropriate if it's a procedure needed. If you're in the LA area you have experienced lung doctors available where Judy suggested.

All best,
Janine

snickerdoodle531
I thought I'd give an update

I thought I'd give an update in case anyone else is in a similar situation with their lung cancer reoccurrence after 4 1/2 years. It has taken this long to have a second opinion with a thoracic surgeon at UCLA and the follow up tests: pulmonary breathing test, chemical stress test, needle biopsy and PET CT. I see the surgeon for his opinion later this week.

The needle biopsy confirmed adenocarcinoma - lung cancer but the mutation results aren't in yet. I suspect we are now going to schedule a resection.

I wonder if I made a mistake in my selection for a second opinion. I requested an opinion from a thoracic surgeon as the surgeon with my oncologist didn't give me confidence of success. But now I wonder if I should have requested an opinion from an oncologist at UCLA - who would coordinate and refer if needed, instead of going directly to the surgeon.

Also, I haven't spoken with my oncologist since Jan and deciding if I am returning to my original oncologist or finding one at UCLA (2 hour drive each way) is another question facing me.

Thank you for any insight or shared experiences.
Cindy

cards7up
What stage? Just ask at UCLA

What stage? Just ask at UCLA to include the med onc in your second opinion.
Take care, Judy

snickerdoodle531
Hi Judy,

Hi Judy,
Sorry for the delay. I did a computer update and suddenly my passwords aren't recognized and the laptop is a heavy paperweight.

What stage is an interesting question to me. I don't have a definative answer. Since it is a reoccurence of the nsclc diagnosed 5 years ago, I think that automatically puts me at stage 4. But because the tumors are 0.4 mm and 0.5 mm in the same lung, I could also be considered stage 1. My oncologist hems at answering but the UCLA doctor said he doesn't necessarily agree with the stage 4 classification unless after we test some lymph nodes and they come back positive.

The plan is to do a bronchoscopy to test some lymph nodes and carefully check them. If negative, then I will have another lobectomy of the middle lobe. If the nodes are positive, then I will go back to the oncologist for a treatment plan as stage 4 progression.

Blessings to you,
Cindy

cards7up
How did you do on the

How did you do on the pulmonary function test? If you keep removing lung lobes, then you're going to lose pulmonary function. You said you had a 2 cm lesion and are you saying you also have two more lesions in the mm range in the same lung/lobe? It doesn't automatically put you at stage IV. I had a mediastinoscopy to test for lymph nodes and think it's similar. Let us know how you make out.
Take care, Judy

lgg1918
Cindy,

Cindy,
Thank you so much for coming back here to post a followup. I'm so sorry to hear your biopsy was positive for another cancer. I really appreciate how hard it can be to sort through everything to be able make the best decisions for yourself as you move through all this.
I wanted to let you know about Dr. Jae Kim, the Chief thoracic surgeon at City of Hope in LA. He is amazing, kind, patient, and so well equipped to give you great guidance in a 2nd opinion so you can make truly informed choice.

Sometimes the "top" major cancer centers can be a slow moving bureaucratic maze, and at times a long time coming for getting the answers you need to consider your options. I remember it took two months for another major university cancer center in southern CA to call me back with an initial appointment time.

If you have an oncologist closer to home you trust, and a closer facility that can provide your treatment, there's no reason a major cancer center such as UCLA or City of Hope can't coordinate your care with that doc and your local facility. City of Hope was quite happy to do that for me, and my closer to home oncologist and phenomenal hospital were happy to coordinate my care. Also, a number of large community hospital cancer centers have now affiliated with the top cancer centers, so that the patient has access to care close to home as well as the expertise of the major cancer center that local hospital center affiliates with. Keep in mind also that these large community hospitals also have their own built in internal 2nd opinions via their Tumor Boards, and via their pathology departments. For example, my initial biopsy was sent out to Mayo Clinic automatically for diagnostic 2nd opinion after being reviewed by several pathologists locally.

You have so much support here. My best wishes to you as you move through this.

catdander
Hi lgg1918, Thank you so

Hi lgg1918, Thank you so much for providing such thoughtful and informative info. :)

snickerdoodle531
Igg1918,

Igg1918,
Thank you for the support and insight. City of Hope was definitely one of the places I strongly considered for a second opinion. To know that I could coordinate with a top provider while using a local provider closer to home is a great option.
I really appreciate the insight several people offered to choose a Thoracic Surgeon if possible because of additional experience they have over Cardiothoracic Surgeons. I didn't realize there was a difference.

cards7up-
You have caught another confusing aspect of my adventure. I have 2 small nodules that sometimes are referred to as 0.4mm and 0.5 mm but because they are side by side and appear to have "coalesced" they also are referred to as a single 0.9mm tumor. My pulmonary function was good. I asked about a wedge instead of a lobectomy and was told the middle right lobe is the smallest of the lobes and so shouldn't cause excessive stress as opposed to a wedge resection but will hopefully improve the possibility of "cure." He said they would be as minimally invasive as possible. I am having lymph nodes biopsied a week before to be sure none are affected. If they is a positive result, we won't do the surgery but move on to other treatments.

I have now opinions from my NCI designated oncologist, an NIH lung cancer tumor board, and a thoracic surgeon at UCLA and they all agree so I'm in with fingers crossed.

The support and opinions of the people in this community have been so valuable for both treatment, education and mental health. THANK YOU! I send all the good wishes and energy back to you!

catdander
Cindy, I'm glad you've made

Cindy, I'm glad you've made your decisions and had the opportunity to get such excellent heads in the game. It sounds like you've got your ducks in a row. Your next hurdle is the wait. It's often thought to be the hardest part. At least that what Tom Petty says. :) But also many who go through it.

I hope this is all over very soon.

All best,
Janine