My father Robert, entirely healthy at 65 years of age, swimming 2 miles daily, began to show breathing problems. Diagnosed with pneumonia for 6 months on antibiotics, the doctors finally decided to do a lung biopsy (transbronchial) after his lung collapsed. Even after surgery, his pulmonologist denied cancer, until the lab results indicated Bronchioalveolar carcinoma (BAC). A PET scan indicated BAC in the right lung as well. The doctors claim my father does not have a metastatic disease but yet he does have indications of the disease in the opposite lung while the oncologist waffles between staging him at IV and III. He is immediately put on Tarceva and told surgery is not an option, (although he is a perfectly healthy candidate for surgery). He now has O2 24/7 because of mucus from the BAC and the collapsed lung? He has been seen by the oncologist once since starting Tarceva and told be come back in 4 to 6 weeks. What the heck? There is an unclear stage, unclear where the cancer is exactly in his body, and a shaky plan of attack. What do I do to not upset my father by meddling, or his doctors?
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Father has NSCLC BAC IV after 6 mo. pneumonia diagnosis
- By amberwaves
- Posted June 5, 2008 at 3:04 pm · 14 replies
- In Lung cancer
- Shared with the public
14 replies
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- By chemo1
- Posted June 6, 2008 at 10:13 am
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Please Please Please get a second opinion. If I had I would not have been stage 3 colon cancer at 46 years old. I went through the very same thing you are going through for two years! I should have been stage 1 but because I listened to my doctor who told me I was just middle age and people my age have bowel problems I wasted 2 years until I was stage three. Not all doctors are perfect. We are talking about a life here. so please seek a second opinion. If his current doctors are insulted by this request, oh well, they are not the ones in his situation!
- By IndyEve
- Posted June 6, 2008 at 10:58 am
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I agree with Chemo1, get a second opinion ASAP, I had 4 gyn tell me over 5 years that it was my age and hormones, kept changing gyns because I didn't want to go on hormones, even my primary dr, said the same thing, even after coming in bent over in pain, and an ultra sound said only fibroids and cyst, 5 gyn thought the same but did biopsy to rule out cancer came back grade C, uterus was totally incased in it, that's why ultrasound looked normal, surgery scheduled right away and came back as IIIC, if I'd listened to the other drs, I woundn't be writing this now, get a second opinon now!! Best of luck to you and your Dad and family
- By 28forest
- Posted June 7, 2008 at 5:28 pm
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Hi Just a re tarceva - in my experience (stage IV NSCLC)
I had a dramatic response WITHIN a month. so at least I sort of knew where I stood with that treatment quickly. I am in New Zealand, but my family is in the US and a friend of the family who is an oncologist didn't believe it was possible to see a result so quickly. Wrong.
- So all I'd suggest is maybe trying to get a straight answer about what to expect in terms of response to tarceva and when - (eg 3 wks, 6 wks, 2 months) and get the CT scan sceduled for 3-4 weeks after so you at least know if that is going to be a treatment option. .... while you purse what me be an accurate diagnosis!
(also with the tarceva, i had really nasty skin reactions which were treatable with 1-200mg of doxycylcine/day and subsided after a few months, and anusea that subsided after a couple weeks)
best wishes to you and your family!
- By 28forest
- Posted June 7, 2008 at 5:29 pm
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Hi sorry that last post wasn't clear re the moain point I wasnted to make which was to say you might want to get a repeat ct scan done 3-4 weeks after he started the Tarceva. cheers,
- By Goodget
- Posted June 12, 2008 at 1:14 pm
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Hi there. My sister was diagnosed with BAC (Stage 4 NSCLC) in 2002, after docs first thought it was lupus, asthma, pneumonia, etc. They did a bronchoscopy as a last resort and discovered the cancer in both lungs (looked like broken glass - no hard tumors). Luckily, it is a very slow progressing cancer; I guess if you have to have lung cancer, this is the type to get. She had fluid in her lungs and was put on Iressa, which unfortunately isn't available now. Her response was immediate - no more fluid in her lungs. That response lasted a couple years. She tried Tarceva, which did not work for her. Unfortunately, in the past 2 1/2 months, her cancer spread to her brain and spinal fluid (worst place for it to be), and she did WBR (whole brain radiation). The steroids she had to take wreaked havoc on her leg muscles. She is getting off the steroids today, but her overall health is declining. I have no idea what your father's path will be, but my sis had for the most part a good 5 1/2 years. Her first doctor told her she had a year to live. Do a lot of research, and bring ideas and clinical trials to the doctors. They, for the most part, do not think outside of the box.
- By amberwaves
- Posted June 12, 2008 at 4:37 pm
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Goodget,
I am very sorry to hear about your sister. I hope her situation improves. Sounds like she is going through quite a lot and she deserves a break thru. My father also has a lot of mucus (you refer to as liquid?) in his lungs, and no hard tumors. Is your sister a former smoker (20yrs), healthy, athletic (diving, biking, swimming, etc.), and young like my father? Thank you for sharing.
Regards,
Amber
- By Goodget
- Posted June 12, 2008 at 5:01 pm
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Hi Amber. Yes, the fluid is mucus (she would cough up a lot in the evening - hard to sleep thru the nite). She just turned 61, and she smoked over 40 years ago. Not a heavy smoker at all. BAC seems to target women more than men, and is more of a non-smoking type of cancer. When she was young (teens) she would get colds that often settled in her chest. The repeated coughing probably scarred the lung lining and tissue, making her more succeptible to disease. I feel this is another reason she got this cancer. Tell your dad (and you) to do a lot of research, look into clinical trials (Phase 2-4). Chemo really doesn't address this type of cancer. The only chemo that may help is Alimta. But if your dad is feeling well, and the progression is slow, he should do all he can to find alternate ways to stabilize the cancer.
Leslie
- By amberwaves
- Posted June 12, 2008 at 5:21 pm
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Dear Leslie,
Sounds like you have struggled through all the complicated literature yourself, fighting alongside your sister. I would like to discuss more with you offline. Please email me at amberwaves@nethere.com when convenient, if this is alright with you.
Regards,
Amber
- By Goodget
- Posted June 16, 2008 at 12:42 pm
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Hi Amber. I just sent an email, and it came back saying "undeliverable"...let me know if you received it.
Leslie
- By amberwaves
- Posted June 18, 2008 at 2:31 pm
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Hi Leslie,
Sorry about that. I am now in town with my father in San Rafael, CA, and my mailbox got too full. Your mail should get through now. I am returning to San Diego, tomorrow (Thursday), and should be able to give you my attention then.
Cheers,
Amber
- By magazine2
- Posted January 23, 2009 at 11:17 am
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Hi, I sent you a email and not sure if it went thru, just wondering how your dad is doing since I have the same dx. Mine is multifocal spec bac with multifocal specs. Its just so scary.
diane dmaas22913@aol.com
- By amberwaves
- Posted January 23, 2009 at 1:36 pm
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Hi Diane,
Unfortunately, my father passed away Oct 3, 2008. He ran into complications with nose bleeds and blood flow. It was a terrible scene with my Step-mother and myself. It has been hard for me to even visit this site. You are welcome to email me @ amberwaves@nethere.com anytime.
-Amber
- By kmarienap
- Posted January 24, 2009 at 8:22 am
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You must talk to another dr. My momwas treated for pneumonia for about 6 months also. It turmed out to be lung cancer but this was not "discovered" until she had such horrible pain in her bones-the cancer mestatised. The whole situation was just not right and she to was very private and independent. Had she not relied on the wrong doctors she might have survived longer. The worst started in August of 2000 and she only lasted until October 2000. She was still getting the run around while she was actually half way through in the terminal stage of this disease. The pain was absolutely horrendous. Sometimes we have to over step those we care about to help them. Ultimately the decisions are up to them. I look back now and realize how scared she really was and was only worried about me! At least I was able to show her that she was my main concern and she felt very secure in that I handled EVERYTHING right to the end. I only wish that I had interceded earlier as maybe it would have made a difference. Your dad will appreciate anything you do!
- By FAMILYGIRL
- Posted June 29, 2009 at 10:21 pm
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Please help me understand......my sister was told she has BAC lung cancer of course stage 4 she is only 54 and she is a fighter so if anyone has anything helpful to share we would love to hear.
Thanks
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