It irks a bit that the condition could go this far when I was under the care of a Pulmonologist for about 6 years, who knew my history - heavy smoker over 50 years, cancer in the family, etc.
I got my CT scans as directed, and the upshot is that the tumors have already metastasized to the mediastinum nodes. Am I unreasonable to think my Pulmo. let me down a bit? That he should have been a little more diligent to spot the problem before it oozed to the nodes?
I haven’t asked this question of any doctor, as yet.
Yesterday (3/21) I asked my Oncologist if my cancer was particularly virulent, and it caught him so off guard he almost said “Pshaw!” in his denial. I don’t know if he knew the answer. I had the needle biopsy on the 3/6.
For the moment, at least, surgery is out. I’ll have chemo and radiation therapies in the hope of a remission and then, maybe I’ll get the upper lobe resected.
So, on Monday I’ll meet with my Radiation MD.
What questions should I ask of him and my Onco,as well? Or should I just shut up and grin and bear it?
Sadly, screening has not yet been shown to be helpful, even for high risk patients (people with over 20 pack year histories of smoking) such as yourself.
I can’t say whether your pulmonologist was remiss or not, but it is not currently standard medical practice to screen for lung cancer on asymptomatic high risk patients.
Demand your doctors’ estimations about the survivability of your type of cancer with its spread thus far. Don’t accept vague “we’ll beat it back and you’ll feel better” assurances. Sadly, too many oncologists don’t like to give bad news.
Make sure you understand just what it is you’ll get from chemo and radiation, in terms of risks, benefits, and side-effects. For some patients, it’s a godsend which extends their life significantly and even cures a few, but for some it’s a nightmare they later say they wish they’d have skipped.
I lost 4 patients and also my uncle to lung cancer, all within the past 9 months.
Also, sorry you’re going through this, and I wish you all the best in your treatments.
I think your question about virulence was completely reasonable, and should have been answered honestly and completely. Next time you see the oncologist, ask again and insist on an answer. I don’t mean being nasty or confrontational. Perhaps more along the lines of, “I really need to understand what I’m dealing with here in order to work with you, and I need your expertise. Can you please explain to me…”
If it were I, or a member of my family, these are the starting questions I’d want answered:
Why wasn’t this caught earlier? Is there something additional that my family members could do to as far as screening in order to avoid my situation?
What stage and type is this cancer? What is the prognosis?
Exactly what therapy are you proposing? How is it administered? How often?
What are the expected results? How likely is it to succeed? (Knowing that no one can guarantee anything, but what portion of patients with similar status have responded well? What is the best I can hope for? )
What is the alternative? What would happen if I do nothing?
What side effects should I be prepared for? What therapy, if any, can you offer to ameliorate those side effects? To what extent do you expect that I will be able to continue my current daily life?
Is this therapy open-ended, or intended for a limited time? What results would lead to it being continued or discontinued? How would you measure success, or at least progress?
If not open-ended, what do you expect to do after this course of therapy?
If this therapy doesn’t work, are there other things you will try?
I’d expect that after examining you and your medical records, that the doctor would voluntarily tell you all of these things and more. If not, you should ask.
Also, bring a list and take notes. If possible ask a family member or close friend to accompany you to help with the questions and answers. Dealing with a serious medical situation (as you well know) is very stressful. It’s easy to forget to ask or to forget the answers.
Definitely take your wife and write questions and the answers down. When my husband was diagnosed with Hodgkin’s, we would talk about what the doctors said while driving home. If neither of of understood something, we’d call the doctor and ask for a fuller explanantion. They were wonderful about explaining and explaining until we understood. I can only hope your doctors are the same way.
I can’t answer too many of your questions, but I can tell you that about a year and a half ago, my mother was given an almost identical diagnosis to yours. And after a course of radiation and two of chemo, she’s now in remission. So good outcomes are possible.
I do know that she ‘interviewed’ several oncologists to find the one she was most comfortable with. The guy she picked was maybe the best question answerer I have ever met. Just having everything explained in very candid, yet positive detail helped her considerably. And she had questions, possibly numbering into the billions. Ask everything. In the office when you can, but on the phone just about any time you’re unclear/confused/concerned. Also, the oncologist set her up with a couple of support groups which she found very helpful as far as coping with the day to day details went.
Between the groups and the library and internet, she did everything she could to become her own expert on the subject as well. It helped her, but I understand that not everybody would want to get that immersed.