Dad's Confusing Diagnosis

lovehopefight

Hi everyone,

Summary:
Here for: My father (50 year old - smoker - occupation welder)
Diagnosis: non small cell adenocarcinoma (1cm tumor in right upper lobe) with brain 2 mets
Treatment: Brain: Gamma knife/WBR - brain tumors responding to treatment - shrinking
Lung: ???? Need advice

We have been dealing with this nightmare since the January of this year. In January, a nodule about 1cm in size was found on my dad's right upper lobe, then a following MRI showed two tumors in the brain.. Since in these cases you must "prioritize" as we were told by the doctors, they focused on his brain first. He had gamma knife radiosurgery on the two tumors followed by 10 sessions of whole brain radiation (WBR). He finished his brain radiation back in the second week of May. The latest MRI shows that both of the tumors have shrunk to almost half in size, no new tumors and no swelling on the brain which is great news. It took him until mid-June to wean off the Decadron, he has been off of it for 2 weeks now and continues to have the mouth thrush, chronic fatigue and especially in the past four days extreme nausea and no appetite whatsoever. He had a needle biopsy done on the lung 2 weeks ago and it came back positive as we were expecting - non small cell adenocarcinoma. However the lung specialist keeps telling us that my father's case is out of the ordinary as there has been no growth or spread (Thank God) in the 1cm nodule located in the right upper lung. He had been pushing for VATS surgery up until our appointment today when we told him about my father's chronic fatigue and non-stop nausea. He says now he "doesn't feel comfortable going ahead with the surgery" and has referred us to a radiologist for lung radiation.

I am confused and frustrated as hell because first they tell us that he is stage 4 due to the brain mets but then they can't figure out "why the lung nodule is not growing" (as if it's a bad thing). My father does not want radiation as the effects of brain radiation have ruined him in the last 3 months... He still cannot taste anything and his mouth burns.. He sleeps all day long and has lost his appetite since stopping the decadron. I have been looking into radiation on the lung and I know it does have its own side effects concerning the esophagus even if its not as extreme as brain radiation.

The lung specialist used to talk as if he could be cured of the lung cancer with the surgery.. and now I feel like he is just giving up on my father because he has had a bad week. We are going to get a second opinion from another lung specialist sometime this month. But I just would like to have your views on what route you would suggest? Has anyone of you experienced anything similar to this?

I am thankful to God that the tumor in the lung is not growing or spreading, and I just want it to be gone but I don't want my dad to suffer if the recovery from the surgery will take him downhill.. Please share with me your experiences relating to anything I have said in here.

Thank you so much and God bless,

Deniz

Ex_Rock_n_Roller

Second opinion sounds like a good idea
It would really seem like the surgery is the way to go, but no matter which way he does go, he's going to have to get himself into eating again. I can't really come up with good ideas on that, because I really didn't have that problem at any point. My profile: NSCLC adenocarcinoma 3B, tumor in left main stem bronchus, and mets to two lymph nodes within the chest. Chemo and radiation only; surgery not an option. Last treatment July 2010; looking decent since.

Regarding the radiation to the chest, it will also produce grinding fatigue. The esophageal involvement will depend on proximity of the tumor (and therefore radiation) to the esophagus. In my case, the radiation pattern went right across my esophagus, so I did have the problem, albeit with later onset than feared. I think I got through 2/3 to 3/4 of the treatment before it became a real problem, and the discomfort can be impressive. They do have things they can give you to help, and I managed to get through the treatment without resort to a feeding tube or any hospitalization.

It's a shame he has the brain involvement, otherwise it sounds like he might be able to get away with a very tolerable course of treatment.

If the lung tumor isn't moving, I wonder if they'd give him a little more recovery time before doing anything? If he can get back to eating and feeling semi-decent, I would think he could stand up to either the surgery or the radiation.

Very best of luck to you and him.

lovehopefight

Ex_Rock_n_Roller said:

Second opinion sounds like a good idea
It would really seem like the surgery is the way to go, but no matter which way he does go, he's going to have to get himself into eating again. I can't really come up with good ideas on that, because I really didn't have that problem at any point. My profile: NSCLC adenocarcinoma 3B, tumor in left main stem bronchus, and mets to two lymph nodes within the chest. Chemo and radiation only; surgery not an option. Last treatment July 2010; looking decent since.

Regarding the radiation to the chest, it will also produce grinding fatigue. The esophageal involvement will depend on proximity of the tumor (and therefore radiation) to the esophagus. In my case, the radiation pattern went right across my esophagus, so I did have the problem, albeit with later onset than feared. I think I got through 2/3 to 3/4 of the treatment before it became a real problem, and the discomfort can be impressive. They do have things they can give you to help, and I managed to get through the treatment without resort to a feeding tube or any hospitalization.

It's a shame he has the brain involvement, otherwise it sounds like he might be able to get away with a very tolerable course of treatment.

If the lung tumor isn't moving, I wonder if they'd give him a little more recovery time before doing anything? If he can get back to eating and feeling semi-decent, I would think he could stand up to either the surgery or the radiation.

Very best of luck to you and him.

Thank you for your prompt
Thank you for your prompt reply. My mom and I both agree that he should go ahead with the surgery once he is feeling better, as the tumor hasn't grown in size in over 7 months. He had a bronchoscopy done prior to all of this and thank goodness his lymph nodes were clear. I don't understand why the specialist is leaning towards radiation now when he has been wanting to operate since the beginning. As everyone wants for their loved ones, we want him to be given a chance for a cure - and as you mentioned, many patients do not have the option of surgery so I will definitely be looking forward to a second opinion with perhaps a more experienced surgeon.

Did you find that the side effects of the chest radiation are long-lasting? How long was it before you were able to eat without discomfort again?

Samsungtech1

lovehopefight said:

Thank you for your prompt
Thank you for your prompt reply. My mom and I both agree that he should go ahead with the surgery once he is feeling better, as the tumor hasn't grown in size in over 7 months. He had a bronchoscopy done prior to all of this and thank goodness his lymph nodes were clear. I don't understand why the specialist is leaning towards radiation now when he has been wanting to operate since the beginning. As everyone wants for their loved ones, we want him to be given a chance for a cure - and as you mentioned, many patients do not have the option of surgery so I will definitely be looking forward to a second opinion with perhaps a more experienced surgeon.

Did you find that the side effects of the chest radiation are long-lasting? How long was it before you were able to eat without discomfort again?

Radiosurgery
I am from the prostate cancer website. I have metastic prostae cancer that spread to the lungs. Had 5 nodules in both lungs. They took one with a biopsy that is bad. Had to cut it open. Anyhow my doctor who did surgery for biopsy said he could not do it. Went to a group called radiosurgery. They set me up for twelve threatments. This is cutting edge. The computer watches your breathing and will not fire if your breathing changes. Anyhow completed my 12 treatments and went for my ct scans and mri three months later, my normal schedule, and the nodules in lungs had disappeared. My PSA went to 0.000. It will not last, but gives me time. Side effects were not too bad.

Good luck.

Mike

Ex_Rock_n_Roller

lovehopefight said:

Thank you for your prompt
Thank you for your prompt reply. My mom and I both agree that he should go ahead with the surgery once he is feeling better, as the tumor hasn't grown in size in over 7 months. He had a bronchoscopy done prior to all of this and thank goodness his lymph nodes were clear. I don't understand why the specialist is leaning towards radiation now when he has been wanting to operate since the beginning. As everyone wants for their loved ones, we want him to be given a chance for a cure - and as you mentioned, many patients do not have the option of surgery so I will definitely be looking forward to a second opinion with perhaps a more experienced surgeon.

Did you find that the side effects of the chest radiation are long-lasting? How long was it before you were able to eat without discomfort again?

Length of side effects
"Did you find that the side effects of the chest radiation are long-lasting? How long was it before you were able to eat without discomfort again?"

Not bad. As I recall, I was eating bland stuff without significant discomfort inside two weeks, and anything I wanted (translated as Mexican with a Margarita) at not much more than a month. I don't think I recorded Margarita day on the calendar, but I should have!

I think I have to be a little more careful to avoid conditions that would give me reflux now, but nothing that affects my quality of life in any noticeable way.

What the human body will withstand is pretty impressive.

Samsungtech1

Ex_Rock_n_Roller said:

Length of side effects
"Did you find that the side effects of the chest radiation are long-lasting? How long was it before you were able to eat without discomfort again?"

Not bad. As I recall, I was eating bland stuff without significant discomfort inside two weeks, and anything I wanted (translated as Mexican with a Margarita) at not much more than a month. I don't think I recorded Margarita day on the calendar, but I should have!

I think I have to be a little more careful to avoid conditions that would give me reflux now, but nothing that affects my quality of life in any noticeable way.

What the human body will withstand is pretty impressive.

Side effects
They gave me something called Clack's syrup. Your throat starts to go out. I was unsure what was happening but one of the doctors jusr said I will prescribe this. I had not said my throat was hurting, but when you are doing all I was doing at that point in time how would you know that it was from radiation? Anyhow medicine was a godsend. Took the throat and made it well. Can not answer about other side effects because I started on hormone theraphy and not sure what caused what. I quit the hormone theraphy and eventually side effects went away, but at my Dr.'s urging I started taking this again. So far I am having aide effects, but not like I was having before. So I am unsure.
The people at radiosurgery said they can succesfully, no guarantees, treat up to 1.5cm tumors.

Samsungtech1

Ex_Rock_n_Roller said:

Length of side effects
"Did you find that the side effects of the chest radiation are long-lasting? How long was it before you were able to eat without discomfort again?"

Not bad. As I recall, I was eating bland stuff without significant discomfort inside two weeks, and anything I wanted (translated as Mexican with a Margarita) at not much more than a month. I don't think I recorded Margarita day on the calendar, but I should have!

I think I have to be a little more careful to avoid conditions that would give me reflux now, but nothing that affects my quality of life in any noticeable way.

What the human body will withstand is pretty impressive.

Side effects
They gave me something called Clack's syrup. Your throat starts to go out. I was unsure what was happening but one of the doctors jusr said I will prescribe this. I had not said my throat was hurting, but when you are doing all I was doing at that point in time how would you know that it was from radiation? Anyhow medicine was a godsend. Took the throat and made it well. Can not answer about other side effects because I started on hormone theraphy and not sure what caused what. I quit the hormone theraphy and eventually side effects went away, but at my Dr.'s urging I started taking this again. So far I am having aide effects, but not like I was having before. So I am unsure.
The people at radiosurgery said they can succesfully, no guarantees, treat up to 1.5cm tumors.
I for got to mention that Dr.C. Ron Kersh was the man sent to Switzerland to work with the Dr. Who invented it. He spent two years in Switzerland and then cam back to the USA and started opening clinics that are controlled by the University of Virginia. He is a good DR. When I asked him about my likely longivety he said 5 years best bet. VA says 2.88 years. I would ise this treatment. Not everyone has the "big one". Everyone needs to fight to their best ability.
Good luck to all of you, but do not place survival on luck. Do your homework, and get the best help you can get.

Mike