My father, 63, was diagnosed in May with NSCLC, stage 3b, large tumor in the left lobe and affected lymph nodes on the other side. At the time, Dr.s said that other scans were clear. My dad, a smoker, was tested for, though no genetic markers were found. He had chemo and radiation therapy. During his treatment, several (hopefully minor) errors occurred:One, when the oncologist changed one of the drugs from transfusion to oral administration, he forgot to change the dosing, and my father received too little of the drug until they found the mistake, 1 week later. Second, my dad swelled up with "near" SVC syndrome as he was waiting several weeks before they started radiation, after diagnosis (supposedly the dr.s needed the time to create a plan for his radiation therapy). This was resolved after radiation was started. Third, my dad got a blood clot from the chemo catheter--he'd been really swollen in the face the duration of the treatment, and as soon as the catheter was removed by emergency surgery, the swelling immediately went down. Lastly, on a post treatment scan they found a "small spot"on my dad's brain, which, when they re-examined the initial scans, they noticed had been there all along. This spot changes my dad's staging from 3b to 4. One dr. said if they'd seen the spot originally, they would not have offered him radiation for the lung tumor in the first place. They did a one time radiation treatment on his brain, and we are waiting for the results on this. Otherwise, the treatments, which finished at the end of August, were successful in that the tumor did shrink (though it is still sizable, I don't know all the measurements but I know one measurement was still 6cm), and he tolerated treatment well. Now the plan is maintenance chemo, Alimta, for undetermined duration. My parents are visiting a specialist at MS-K to see if they might discover any alternatives. What questions they should be sure to ask to get the most out of this consultation?
Thu, 10/18/2012 - 12:19
I'm afraid it's much easier for the expert docs to answer more specific questions than very open ones like "what should I ask?". I'd be happy to try to help with one or a couple of more focused questions if you have them.
Thu, 10/18/2012 - 12:22
For the consultation, are their specific drug/treatment trials or alternative we should mention or ask about?
As for the treatment so far, do the missteps I mentioned seem normal or is that exceptional?
Thu, 10/18/2012 - 12:25
Maybe I should explain that along the way there were several times that we'd "wished someone had mentioned to look out for that," i.e. the blood clot, the dosing, etc. Are their questions, in this circumstance, that I might "wish I had known" to ask an expert doc?
Thu, 10/18/2012 - 12:31
I think it may be best if you familiarize yourself with what to expect from your second opinion and what typical treatment is performed for stage 4 nsclc. I'll provide you with links in a moment that will help with that understanding.
I hope for the best for your dad,
Thu, 10/18/2012 - 12:55
Thank you, I appreciate any links that can help better prepare us
Thu, 10/18/2012 - 13:04
I know this is probably too much information but I wanted to try to give you a bit of information on everything you discussed above. I'm sure it will help. Please let us know of any further questions after you've given these a look, Good reading, Janine This is an excellent explanation from our Dr. Weiss of what second opinions can offer, https://cancergrace.org/post/insider%E2%80%99s-guide-second-opinion These are good for understanding and treating stage 4 nsclc, http://cancergrace.org/lung/2010/09/18/lung-faq-ive-just-been-diagnosed… Your dad has essentially had first line therapy (platinum doublet) so his next options would be more along the lines of what is called 2nd line treatment. There's a lot of semantics in some of the terms. http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o… This is a discussion on maintenance like the previous links it will add understanding so you will know better what you want to know. http://cancergrace.org/lung/2010/09/24/lung-cancer-faq-im-coming-to-the… This is an explanation of radiation treatment for brain mets, http://cancergrace.org/radiation/2011/06/10/brain-mets-cases/ These are still considered quite unique situations but your dad may still be considered to fit into this catagory, http://cancergrace.org/lung/2010/03/15/farivar-tsao-precocious-met-case/
Thu, 10/18/2012 - 15:05
I think it's great to look into options at this point. Here is a discussion of the value of maintenance therapy:
and here is a summary of the leading options as "second line treatment" for patients after moving beyond first line therapy for advanced NSCLC:
With regard to the severity of the problems he's had, my impression is that those errors are not especially likely to have had a very significant negative effect. The blood clot is something that is quite common regardless of any error, and the planning for radiation does take time. While the question of the brain metastasis may have led to a decision to not do radiation, it would have actually been profoundly appropriate to do the radiation even in the setting of metastatic NSCLC that still has a bulky chest tumor at high risk of developing superior vena cava syndrome. So overall, I'd say that there are many moving parts with cancer and the treatment, that there will be complications even with very good care, and that the errors you describe don't sound to me like ones that would have had much of an effect on the overall course of his disease.
Fri, 10/19/2012 - 05:06
Thank you for your responses and the links. I find all of the information very useful with respect to better understanding what we might expect, and how we can best take advantage, of an expert opinion. The internet is a complicated tool, and often not helpful or useful, for the patient and family, and this site is an amazing provider and filter of the vast quantities of information available. I wish I'd found the site sooner.
As I am new to navigating the world of cancer care from this perspective, my one piece of advice for others in my situation is that I think there is probably no way around being one's own (or one's loved one's) treatment advocate. Of course this could, and I believe optimally should, be a shared job. It would feel so good just to "hand it all over" to a doctor, but it doesn't work that way. It can't--the dr.s job would be impossible--from the patient and family's perspective, a diagnosis like this is often the most profound shock we've received in our lives so far---for the doctor, it's necessarily, just another day on the job. This is why I think it's important to realize early to be as aware and informed as possible. This website is a wonderful aid in this way.
Thank you for taking the time to help us.