My husband had a left pneumonectomy in October 2014 and completed 4 rounds of carboplatin and vinorelbine. He is now 74, fit, active and no other health problems. He was exposed to dioxins and asbestos in his service in Vietnamese waters during the Vietnam War. Even though he is 3.5 years NED, at our request he had a PET scan recently (just to check up on things) and local recurrence has been detected and confirmed by EBUS. We are awaiting mutation testing but seeing an oncologist on Tuesday. This now is a whole new world to us now, talk of genetic mutations, targeted therapy etc. There is talk of chemotherapy, a trial of chemotherapy and 2 drugs, or seeing if he has another mutation - tests will take around 10 days. It seems to me that waiting for the genetic testing is the first step. Does this seem right? He has an oncologist appointment in a couple of days but the results won’t be back. How can my husband make any decisions? Well, he can’t really until more information to hand. Thank you, we are a bit shocked, Judy.
Recurrence 3.5 years after pneumonectomy - 1294432
judy7777
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Reply # - May 19, 2018, 09:04 PM
Hi Judy,
Hi Judy,
I'm sorry to have to welcome you back to GRACE because of your husband's recurrence. It's correct to say that doctors and patients typically wait for mutation test results before choosing a treatment regimen. If an activating mutation is present, the appropriate targeted therapy is usually chosen, as those therapies can often be quite effective, and in any event standard chemotherapy.is an option if necessary after targeted therapy.
Many patients are reluctant to wait for test results before starting treatment, but unless a patient's disease is extremely aggressive, the short delay is not significant. But in order to help you make that decision quickly after the results become available, your husband's oncologist may want to discuss the possible options before the results come in, so that you will be well-informed in advance.
Please let us know if you have any further questions.
JimC
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Reply # - May 20, 2018, 02:43 AM
Hi Jim
Hi Jim
Thank you so much for reply. I have been reading GRACE for the years since my husband’s pneumonectomy and have learned a lot (although really have had nothing to contribute). We can just be thankful he insisted on the PET scan and the recurrence has been found so early. He has no symptoms, is extremely fit and well and his next CT was to be in December. His consultant was reluctant to request the PET as he had said my husband was through the danger period for recurrence. (I know most happen in the first three years).
Yes, I’m sure now that the oncologist wants to talk options. She is the one he saw for adjuvant chemotherapy. We have the trial notes and my husband is ineligible if he has ALK or EGFR so thinking that all tests will be back before they start treatment. In any event we are going to Romania for 10 days at the end of May and that has already been cleared by the two Professors he saw on Friday last. Very pleased about that!
Thank you again. We are feeling less shocked now!
Judy
Reply # - May 21, 2018, 03:52 AM
Where is the recurrence and
Where is the recurrence and what size? I would think surgery is definitely not an option but there will be several to choose from. So getting a heads up on the different options will give him time to absorb and research and make an informed decision. Immunotherapy will likely be one of the options.
Take care, Judy
Reply # - May 21, 2018, 05:03 AM
The bilateral lower
The bilateral lower paratracheal and subcarinal nodes showed disease recurrence on EBUS The right supraclavicular nodes are low grade metabolically active and are suspicious (PET report). It crossed our minds it might be possible to perform surgery on the supraclavicular nodes and have radiation on the others. This is an entirely new ball game now so questions might be a bit off key. The onc appointment is tomorrow Thanks, Judy
Reply # - May 21, 2018, 03:08 PM
Not likely that surgery will
Not likely that surgery will be an option. It will be radiation for all the lymph nodes and possibly chemo or immunotherapy. Take care,Judy