Now what?

This topic contains 8 replies, has 3 voices, and was last updated by  teamfrank 2 months ago.

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October 9, 2017 at 10:40 am  #1293273    

teamfrank

I’ll start with my question and then give the information that may be needed to give any sort of an answer.

What, if anything can we or should we be doing at this point?

Background:
My 70 year old father has been told by 3 doctors that they strongly believe he has lung cancer. First test was a chest x-ray done for a different medical issue. They saw a suspicious spot and referred him to the VA in Iowa City. He saw a pulmonologist there who ordered a CT Scan. That resulted in them telling him there is a mass in his left lower lobe that is highly concerning, his lymph nodes are enlarged, and there was a spot on one of his kidneys. They stated the lung mass should be considered malignant until proven otherwise. They scheduled a biopsy but the day of the procedure decided not to do that but instead ordered a PET Scan. The day of the cancelled biopsy they attempted to have him perform PFTs but he is not able to do so. He met with the doctor that day who told him that while he strongly believes this to be cancer, it is still possible that everything they have seen could be caused by an infection but we should prepare for the worst. Pulmonologist indicated that due to his very poor health (severe COPD), he is not a candidate for surgery. My father has already indicated he will not do chemo or radiation. He went in and had the PET Scan. After that test they were no longer concerned about the kidney at all. After the PET scan they scheduled him for a bronchoscopy. That occurred last week but they were unable to obtain a sample from one of the lymph nodes. He will not be allowed to have a needle biopsy. He is being referred to a GI doctor for procedure to possibly obtain sample from lymph node near esophagus. No guarantee they can obtain sample. Also referred to ENT due to area lit up on larynx on PET scan. He wants no further tests for at least 6 months and doctors from latest procedure stated his treatment options are limited and won’t improve quality or quantity of life

October 9, 2017 at 1:05 pm  #1293274    
catdander forum moderator
catdander forum moderator

Hi teamfrank and welcome to Grace.

While we nor anyone online who isn’t involved in your dad’s care can suggest what should be done we can give you some info that might help you understand what’s happening.

The only way to be sure something is cancer is to look at it under a microscope. From a CT and PET infection and cancer look very much alike so this is why a biopsy is important before considering what should be done about cancer. While you dad’s doctor said it’s cancer until it isn’t other doctors may say it isn’t cancer until proven otherwise.

To be sure many cancer symptoms can be alleviated for a while by anti cancer treatment for even years with new treatment options for some people with nsclc so I’m not sure what your dad’s doctor meant by his statement about nothing being able to be done. It could be that your dad may be too weak for treatment but that’s a decision best made with an oncologist’s input. If your dad is diagnosed he can then be seen be an oncologist. Since we are a cancer treatment website our faculty and members are looking into treatment options so just because we don’t discuss forgoing treatment it’s still an appropriate option for some people with incurable cancer. In whatever direction your dad takes know that palliative care is always an option that provides comfort care.

I would have a conversation with the pulmonologist about treating for infection, if the nodule and nodes shrink over time (usually 3 months separate scans) then you know it’s not cancer. FWI, someone with COPD will have a more than average chance at getting a lung infection. A “watch and wait” approach isn’t an unusual plan especially for someone who can’t have needle biopsy or an undiagnosable biopsy. Know that there’s always exceptions to options.

I hope you father gets what he needs.
All best,
Janine

October 9, 2017 at 1:15 pm  #1293276    

teamfrank

Thank you for your response. We (my dad and us children) are quite certain that although all the doctors seem certain that this is more likely cancer than infection, he does not have that diagnosis at this time. They have, just to be proactive, treated him with antibiotics and prednisone twice since all of this started about 6 weeks ago and there is zero improvement as of today. We have been told that his treatment options are limited due to his poor health. As they have ruled out surgery due to that factor and he is refusing chemo or radiation of any type, that further limits his options. From my brief research into lung cancer, I do realize that some lung cancers respond well to certain therapies but without even knowing what exactly we are dealing with, there is no way to attempt any form of treatment. I’m just really wondering if there is more that any of us should or could be doing during this mentally exhausting waiting period.

October 9, 2017 at 1:16 pm  #1293277    
catdander forum moderator
catdander forum moderator

I want to add something about your last statement about quality and quantity of life. Our oncologists here on Grace are adamant on this subject and they are among the best in the business. Dr. Weiss put it this way, “Every cancer therapy has two purposes: to improve duration of life, and to improve quality of life. Every other measure of chemotherapy success, such as response rate or progression-free-survival, is a surrogate to these two true goals. I am using the broken record as my pseudo-apology for repeating this mantra repeatedly on GRACE, to my colleagues, and in my mind every time I make a treatment decision.” http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-therapy-for-advanced-nsclc/

The remainder of the post doesn’t really apply but I want you to know this is how today’s oncologists look at their patients. Oncology is very different than 10 or 20 years ago it’s more caring and thoughtful of the person and loved ones.

October 9, 2017 at 1:21 pm  #1293279    
catdander forum moderator
catdander forum moderator

Seeking a second opinion from an “interventional pulmonologist” that sees a lot of lung cancer may be able to reach and capture diagnosible tissue. This is an area where experience is crucial. A large teaching hospital often have the most experienced docs.

October 9, 2017 at 1:39 pm  #1293280    

teamfrank

Thank you again for your thoughtful response. I will try to discuss that possibility with my father. I am not too hopeful he will consider it as his medical care is provided through the VA (closest to him is in Iowa City) and the insurance he does have is Medicare. He is not interested in running up large medical bills which is why he mostly sticks to the care the VA provides. His mindset tells him that lung cancer is what he deserves for decades of being a smoker. I have assured him that no one deserves cancer. We may not be surprised at such a diagnosis (should he ever get one) but he certainly doesn’t deserve it. I love him dearly but he is definitely stubborn. He almost left without getting the bronchoscopy done when the doctor did let us know beforehand that she could not guarantee that they would get a sample for testing. The only reason he stayed was because she said that his medical records indicated he had started coughing up blood and she felt that the procedure could help them figure out if there was a concerning cause for him doing this. Incidentally, the University of Iowa Hospital is right there.

October 9, 2017 at 5:23 pm  #1293286    
catdander forum moderator
catdander forum moderator

I wonder if the University hospital is connected with the VA. It is here in Birmingham and they do share some of the same doctors. You could speak to someone on his behalf if your dad consents. That way you could get info about insurance and options directly about his care.

October 10, 2017 at 6:13 am  #1293288    
JimC Forum Moderator
JimC Forum Moderator

Hi teamfrank,

You have already received some great information from Janine, and I’d just like to add a couple more thoughts. First, as you have experienced, it is not at all unusual for a patient and his/her loved ones to have very different opinions on what type of procedures to perform and treatments to choose (or forego). Of course your father has the ultimate decision-making authority, and though it can be tough to abide by his decision to forego certain treatments, he is not alone in his desire to avoid therapies that may actually make him feel worse (especially given his existing COPD issues).

That being said, you want him to make as informed a decision as possible. For example, we have seen situations in which a patient equates today’s chemotherapy with the extremely toxic chemotherapy of twenty years ago, because the patient recalls a friend or family member who struggled with it at that time. Treatments such as chemotherapy and radiation are much more sophisticated than they were just a few years ago, and the interventions available to mitigate side effects have improved as well. We have had many patients here who have described their treatment as not too burdensome. If he is as stubborn as you’ve described, it may be difficult to change his mind, but the best you can do is gather as much information as possible to help him make good decisions, with your help and that of his doctors. At some point, even in the absence of an actual cancer diagnosis, perhaps a consultation could be arranged with an oncologist, so that the available options could be presented to him, and likely side effects described.

My best to him and all of you.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 10, 2017 at 7:06 am  #1293291    

teamfrank

JimC, thank you for your response to my question. He is definitely very stubborn. At this point, I am waiting to see how he responds to the GI doctor and the ENT before deciding what my next move might be. I would love to have him give his doctors permission for me to discuss his health/care with them. However, he already has given that permission to my younger sister (I’m the middle of 3 daughters) as he lives with her. I am going to assume, and understandably so, that the doctors don’t want to have to field questions from each of my dad’s daughters individually. I would love to discuss some of this stuff with my younger sister but she gets very easily overwhelmed and just the simple act of us asking her questions that she doesn’t know the answers to makes her feel inadequate. I’m sort of in a tough spot when it comes to this process right now. After I know how my dad responds to those two doctors then I will figure out what may be the next best move. I may simply gather some information about questions she can seek answers to or good resources for her to consider utilizing so she can make the best decisions possible about how she would like to go forward in trying to help our dad. I would share the same information with my dad so that he is able to give proper consideration to all options. I do not like being involved in a way in which I am not very proactive. I am always proactive in everything. I have had more than my fair share of health issues, very major ones included, and I always get the most information available for my decision-making.

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