Father in law with FTD and stage 3b lung cancer - 1254265

diljen24
Posts:2

My father in law has advanced frontal temperal lobe dementia (FTD) and COPD and was just diagnosed last week via PET/CT scan with stage 3b lung cancer. His oncologists are insisting on a biopsy to determine which type of cancer it is (non small or small cell) and are refusing any treatment without biopsy. He is unable to tell us of any side effects or pain at this time because of the advanced FTD, and we feel that the biopsy itself carries too many risks to take (collapsed lung, bleeding, etc). He has been given 3-6 months with no treatment, but the oncologist/ radiologist both seem angry with us for choosing no treatment as they say they can help his symptoms with radiation (16 rounds daily) and chemo. He is so weak already it seems in humane to put him through treatment he cannot comprehend and side effects from that treatment that he cannot communicate to us.

With his FTD and COPD, does a biopsy and radiation/ chemo treatment carry more risks than your average healthy patient? They are trying to convince us it does not and it is different for each patient, but we do not feel they are adequately understanding his cognitive function which is severely lacking.

His PET scan shows 3 tumors, 1 in the lung, and 2 behind his esophagus, with some spread to the lymph nodes. An MRI shows no metastasis to the brain, but severe atrophy due to the dementia.

Thank you so much for any insight you can give.

Forums

Dr West
Posts: 4735

I'm sorry -- that's a tough situation. I'd say that the argument that we don't treat cancer without a biopsy proven cancer is a fair one. That's really considered a critical rule, and it comes about because it's not possible to truly diagnose a lung cancer or any other cancer without a biopsy that shows it under the microscope. And believe me that it's possible to presume someone has lung cancer and then find that it's actually an infection or a lymphoma or an auto-immune disease. We DON'T want to give people the wrong treatment, especially chemotherapy and radiation, for the disease they actually have.

I would really say that the risks of the biopsy are quite small in real terms compared with the potential benefit, though it would be very appropriate to say that no treatment is appropriate and the focus should be on his comfort during whatever time he might have. However, it is possible that treatment could be curative, even if the odds aren't great.

To me, the central question is not the biopsy but the treatment of chemotherapy and radiation. That's a helluva tough treatment plan to give to someone who can't really understand why they are experiencing these treatment-induced symptoms. The biopsy is really a cakewalk compared with the treatment, which can be a huge amount even for people who can understand what is happening to them and participate in these decisions.

My sense of the key points:

1) It's worth knowing that the treatment for stage IIIB lung cancer could possibly be curative (small cell or non-small cell), though the odds aren't as good as we'd like.

2) The treatment of chemo and radiation is a lot to go through, especially in someone who can't understand what's going on. They far overshadow risks of the biopsy.

3) It would be completely reasonable to decide that the risks of harm exceed the benefits here, given his unique situation, whether these doctors are pressing for treatment or not.

Good luck.

-Dr. West

diljen24
Posts: 2

Dr.West,

Words cannot describe how grateful my husband and I both are for your extremely prompt and thoughtful response. Thank you so very much for taking the time to offer your insight. You have assisted us in making an extremely difficult decision, and we sincerely thank you. If only our local doctors had been as willing to expand on our options and pros and cons as you did!

With gratitude,

Jen

double trouble
Posts: 573

Dear Jen,

I'm am very sorry your family is going through this. I wanted to give you some perspective from the patient's side. My family understands me pretty well, and if it were me, they would choose no treatment. I have been very clear. If I had a high degree of irreversible dementia I would not want to be treated aggressively for any life threatening ailment or situation that came along. I would want to be monitored and treated for pain (or best guess at pain). But otherwise I would want no treatment.

I know that if/when the time comes it will be very hard for my family to withhold treatment. But I have told them not to feel guilty that they didn't do everything they could, because quality is more important to me than quantity. If I can't understand what's going on around me, and there is no hope that I ever will, I don't want to be here. Let me go.

A palliative care team or a hospice team might be very appropriate here. Just because we have the ability to keep someone alive longer, that doesn't mean we should always use it. And in addition, how much will this cost the family? Cancer treatment isn't cheap, and I'm sure the medical expenses are a consideration already. There are doctors out there who are not exactly honorable. At the very least get a second opinion from a totally different institution (about the cancer treatment). Maybe even a third.

I need to emphasize that this is all just my opinion, that there are others who would say it is appropriate to fight to the bitter end, and that anything less is giving up. I'm just saying that I am not one of those people. I don't think that accepting the inevitable and trying to go through it gracefully is giving up.

Agian, my heart goes out to you in this very tough situation. I hope that you are fully committed to and comfortable with what ever decision you end up making. Either way, the love you feel is obvious from your post.I wish I had a magic wand to make this easier.

Debra