brain met. possible lung cancer

tenten

2 weeks ago my 68 year old dad had surgery for removal of a brain tumor. Path. report indicates the tumor was a met. most likely originating from lung cancer. We have a CT/PET scheduled for 7-19. Friday we saw a radiologist who wants to begin whole brain radiation (just in case there are microscopic cells lingering) and is scheduled to start this Thursday. Currently, my dad is doing extremely well. He is back to daily 1 mi. walks, drives, eats well. He came through surgery w/ flying colors...no ill effects. It doesn't make sense to me to give him radiation which could make him feel ill or lose his memory before we even know what type or if it is definetely lung cancer. Wouldn't it make more sense to address the primary source of the cancer first? Additionally, I read quite a few sad stories where family members felt the treatment wasn't worth it because their loved ones quality of life was diminished. It is all so scary-especially since my dad is now so well. I thank you all very much for your sharing your stories and for your input here. God bless you.

lrrabatt128180

I think you are smart to question Whole Brain Radiation (WBR). My mom had it and it made her have symptoms similar to Alzheimer's in that she lost a lot of memory and was majorly confused. Most of the symptoms have improved, but a lot of her confusion remains.

Knowing what we know now, we would not have done WBR at all. Besides, after all the WBR, she continues to have new tumors and the existing ones have grown.

If there are no known tumors, I'd pass on the WBR. Keep in mind, I'm not an M.D., just a daughter of a lung cancer victim w/ brain mets.

tenten

lrrabatt128180 said:

I think you are smart to question Whole Brain Radiation (WBR). My mom had it and it made her have symptoms similar to Alzheimer's in that she lost a lot of memory and was majorly confused. Most of the symptoms have improved, but a lot of her confusion remains.

Knowing what we know now, we would not have done WBR at all. Besides, after all the WBR, she continues to have new tumors and the existing ones have grown.

If there are no known tumors, I'd pass on the WBR. Keep in mind, I'm not an M.D., just a daughter of a lung cancer victim w/ brain mets.

Thanks for your input...and I'm sorry to hear about your mom. How old is she? Does she improve everyday? I thought that it would be a good possiblilty that a tumor could return if youre not attacking it at it's source. Did you mom have brain surgery before the radiation and did she have any chemo? Thanks again...take care and God bless you and your family

MrsC

Hi, tenten -

So sorry to hear about your father. But glad to know how well he's doing so soon after surgery!

Speaking as a lung cancer patient with brain mets, I would suggest discussing your concerns about WBR with your Dad's oncologist. Treatment decisions are up to us as patients. It's important to know that we (and our families) have a say in our treatment protocol.

I have been fortunate (so far) to be able to have the gamma knife radiation done on my brain because the lesions were small enough. First treatment was in Dec. '04, and now I have to have a second treatment this Friday for a new lesion.

Anyway, all my concerns go right to my oncologist (my husband calls him the general contractor). He goes over the options with the rest of the doctors, surgeons, etc., and then we decide what course of action (if any) to take.

I hope this helps somewhat. It is a very scary and confusing time when there is a new diagnosis, so much to learn.

God bless you!

Deanna

lrrabatt128180

tenten said:

Thanks for your input...and I'm sorry to hear about your mom. How old is she? Does she improve everyday? I thought that it would be a good possiblilty that a tumor could return if youre not attacking it at it's source. Did you mom have brain surgery before the radiation and did she have any chemo? Thanks again...take care and God bless you and your family

I'm curious about what your decision was about your dad's WBR. My mom, age 56 was not fortunate enough to be a candidate for surgery or GammaKnife. Instead her incompentent dr's did WBR and offered nothing more. My family and I took her to CyberKnife (www.cksociety.org) where she was able to receive treatment for her 6 brain mets. It did a great job, but unfortunately, the tumors keep returning. I am not sure she has much time left; she has such a crappy quality of life right now. I would strongly advise anyone against WBR as it truly did contribute to her lessening quality of life--much of which she has never regained. Lung cancer is definitely nothing to play around with. Choose your doctor and cancer center wisely---it could mean the difference between life and death for your dad. We are now on our own as her onc. dumped her because we refused to go to hospice and refuse to give up. My mom does not have an oncologist. We are relying on her nuerologist 3 states away and her family doctor to prescribe pain killers and do lab work and scans.

You sound like your doing the right thing already though. You are asking questions, researching the diesease, and reaching out to others. Keep doing that. It does help!
Best wishes and prayers for your dad!

garcia

I'm so sorry that you and your family are having to deal with this, but am very glad to hear your father is doing well.
My father was diagnosed with metastatic lung cancer, as well (at 55 yrs). His doctors did not give an option of surgery and he underwent whole brain radiation. I would also strongly recommend against it. Unless there is a tumor present in the brain that is diminishing quality of life, I would not choose the WBR. My father had many cognitive issues within a year of WBR with no more brain tumors present. Also, I think you are doing the right thing by being an advocate for your father and gathering all the information that you can. The doctors typically have a certain protocol to follow. If they had known your father's tumors were lung mets, they probably would not have removed the brain tumors (which was a great thing). It is an extraordinary doctor that will look beyond the protocol and address the individual, so it is wonderful that he has you to question things, on his behalf. Also, I would highly recommend getting him to meet with someone at a hospital that does cutting edge research with cancer (teaching hospital). They have a different way of approaching cancer and are looking to the future of treatment. I would stay away from clinical trials that simply try new combinations of existing chemo options, but there may be other options for him to consider. My thoughts are with you and your family.

tenten

garcia... thank you for your comments. It was really timely. My dad is not comfortable w/ WBR and it's hard for him to go against dr. recomendations... WBR is "the standard of care" for a lung tumor w/ brain met. A local radiologist would do nothing but WBR, we sought a 2nd opinion @ Jefferson in Phila. the rad. there says he would rec. WBR, but could do "focal radiation" at the spot where the tumor was removed (I didn't realize that they probably would not have remove the tumor knowing it was a met...so I guess that was lucky). My dad feels too uncomfortable to do nothing with his brain...the focal seems like "middle of the road". I'm thinking he will probably do that. I'm wondering now the effects of focal radiation...is there still a good chance of brain damage? I still don't understand why we can't get anyone to move on his lung...if that's where it's coming from, why won't they address that first??? Is it just "protocol" like you said?? I'm sorry to hear about your dad and especially sorry to hear of his cognitive probs. What have drs. done with your fathers lung at this point? Did they deal with that first? Thanks again for your thoughts. My thoughts and prayers are with you, your dad and your family as well.

garcia

I'm sorry that this reply took so long, I haven't been on-line much. I think the focal radiation is a much better option. I'm not a clinician, but from all that I've read, it will greatly restrict the amount of tissue exposed to radiation. It may injure some surrounding tissue, but is much better than radiating the entire brain. It sounds like you and your father are very smart and are doing everything you can to get him the best care possible. Just as you have done, searching for medical opinions until you are comfortable is key. I know that it was a different situation, but that is exactly what Lance Armstrong did. If he would have followed "protocol" they would have done WBR on him, a very young man.
There is an organization called ECAP, Exceptional Cancer Patients. They have a video or DVD called "Fight for Your Life" that is very encouraging and positive. The founder of the organization is an M.D. who did not completely agree with the approach most doctors take with cancer patients. The have a website http://www.ecap_online.org/
They have many resources audio, visual, books, relaxation techniques, etc.
I believe that the doctors probably want to deal with the brain issue first, because it may be the most urgent issue as far as quality of life is concerned. They never directly treated my father's lung. The lung lesions never appeared to cause any difficulties for him (I know that sounds strange). They treated areas that caused him the most pain, through radiation. It sounds like my father's cancer was much further progressed. He actually passed away about two years ago. It is very important that your father keep eating and try not to lose much weight. It is a hard thing to do for some people undergoing treatment. But, if he becomes malnurished, it is much harder to fight. My thoughts are with you and your family.

tenten

garcia said:

I'm sorry that this reply took so long, I haven't been on-line much. I think the focal radiation is a much better option. I'm not a clinician, but from all that I've read, it will greatly restrict the amount of tissue exposed to radiation. It may injure some surrounding tissue, but is much better than radiating the entire brain. It sounds like you and your father are very smart and are doing everything you can to get him the best care possible. Just as you have done, searching for medical opinions until you are comfortable is key. I know that it was a different situation, but that is exactly what Lance Armstrong did. If he would have followed "protocol" they would have done WBR on him, a very young man.
There is an organization called ECAP, Exceptional Cancer Patients. They have a video or DVD called "Fight for Your Life" that is very encouraging and positive. The founder of the organization is an M.D. who did not completely agree with the approach most doctors take with cancer patients. The have a website http://www.ecap_online.org/
They have many resources audio, visual, books, relaxation techniques, etc.
I believe that the doctors probably want to deal with the brain issue first, because it may be the most urgent issue as far as quality of life is concerned. They never directly treated my father's lung. The lung lesions never appeared to cause any difficulties for him (I know that sounds strange). They treated areas that caused him the most pain, through radiation. It sounds like my father's cancer was much further progressed. He actually passed away about two years ago. It is very important that your father keep eating and try not to lose much weight. It is a hard thing to do for some people undergoing treatment. But, if he becomes malnurished, it is much harder to fight. My thoughts are with you and your family.

Thanks for your response. I'll look into the DVD. We saw a pulmonary dr. yesterday. They have a dr "pow-wow" on Wednesdays where they discuss indiv. cases w/ other drs. in various fields. My dad is to be discussed tomorrow with an appontment to follow in which they will recommend treatment. He put the radiation to his brain (now that the tumor is removed) on the "back burner" for a little bit...until the course of treatment for his lung lesion is determined. Thanks again I'll let you know.