I just had surgery for non small lung cancer (bac) which is the kind that cannot be treated with chem or radiation. They removed my right low lobe and wedged out part of 2 upper right ones.
I was told that only a pill that has come out will take care of this type of cancer if it reoccurs. It is multifocal which means they hope they got it all but specs could still be there. Also my margins were clear, and also nothing in the lymph nodes. I was just wondering if anyone has had this type of cancer. My tumor was 2.6 (the big one). I had the surgery where they open you up all the way, and boy I still hurt. It was probably the most painful thing I have ever been thru and yes my back burns and my chest always feels tight and hurts. I am hoping that this does subside in time, but after reading all of these coments on here, it seems that pretty much the pain stays quite a while. I have to return to work soon and that is bumming me out.
Hope to hear back and hope all of your holidays were pretty good.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
BAC
- By magazine2
- Posted January 4, 2009 at 10:42 pm · 24 replies
- In Treatment options
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Taxol Surgery Burns Avastin Pain Tarceva Carboplatin Lung cancer
24 replies
- Oldest first
- Newest first
- By Angie-in-SC
- Posted January 4, 2009 at 10:58 pm
- Report post
Just wanted to share with you someone that I truly admire. His name is Jerrold Dash and also has BAC. He is such an inspiration. You should check out his blog, if you haven't already...
http://2newlungs.blogspot.com/
wishing you a happy and healthy new year!
Angie
- By Wennot
- Posted January 4, 2009 at 11:12 pm
- Report post
Magazine 2,
Tough stuff what you just went through. Best wishes as you recover from surgery. Take the pain meds and get lots of rest. Eat healthy.
If you haven't already seen them, there are a couple of recent postings on Cancer Grace from the oncologist Jack West regarding BAC:
http://cancergrace.org/lung/2009/01/02/prneumonic-bac/#comment-4808
It appears he plans more columns on BAC.
I wasn't diagnosed with BAC but rather adenocarcinoma with BAC features.
Hugs and warm wishes go out to you. I just recently joined this group myself and I knew right away I came to the right place.
Best regards,
Wennot
- By LTLCS
- Posted January 5, 2009 at 12:22 am
- Report post
Hi Magazine2,
Welcome to a great group of people, but I'm sorry you have the need to find us.
I can share with you that I know a gal, Michelle, who was 32 years old 9+ years ago and was dx.d with BAC. She too had part of her right lung removed. At the time she was dx.d she had an 18 month old daughter and a wonderful husband. Well, she now has a 7 year old son to go with her wonderful daughter & husband and she is STILL cancer free and doing very well today.
As for recovery from this surgery, I can agree it's a slow go. I had my left lung removed 13+ years ago and things haven't changed much in the recovery way of things. I have also had open heart surgeries 4 times and I can tell you I healed faster with my open heart surgeries then I did from my lung sugery. But they say this surgery is one of the hardest for people. I agree. But, all of a sudden, one day you'll feel pretty darn good and wonder WOW, where did this good feeling come from.
Hang in there and don't push things. Slow going but excersise is good, walking, walking, and more walking. Build up your lung capacity.
Good luck and I hope you'll hang out with us and get to know us. We're pretty fun and educated people here.
Hugs,
Connie
- By magazine2
- Posted January 5, 2009 at 6:29 am
- Report post
thanks so much for your responses and yes this is a site that seems like one of the best ones. To add to the pain of the surgery, I fell last week on the oposite side and I have more pain on that side than my surgery side, the breast area is so painful where I fell.. I want to eat healthier, so if anyone has any suggestions, I would love to hear about what I should be eating.. I do research, but just get really mixed up with all of the different things.
diane
- By Munker
- Posted January 5, 2009 at 9:47 am
- Report post
I had upper right lobectomy 4 months ago same diagnosis - stage 1a no lymph node involvement. I had the open surgery also and I agree that it is pretty awful. I went back to work 2 months post up and it has not been easy because of the pain and pulling but I finally tried acupunture and it seems to be helping. As for the nutrition piece, I try to eat a balanced healthy diet most of the time but obviously it didn't make much of a difference in getting the cancer. I tried the juicing for short period of time but it is not a realistic choice for me cause I like to eat and the wheat grass didn't really agree wtih me. I actually ended up having a severe allergic reaction to one of the herbal concoctions. I think that juicing is great if you are in to it but i am not convinced that it prevents cancer. There are so many theories out there that my head was spinning trying to figure what i should and shouldn't do. I have decided that moderation with food and Plenty of exercise is probably the best bet for me. If you ever need to talk you can email me on my personal email martaunker@yahoo.com
- By carolyntoo
- Posted January 5, 2009 at 4:28 pm
- Report post
I had a thoracotomy (the open procedure) 5 years ago come February. It really does get better, but not for a while, a year or so. I had VATS in July and that has made the old incision site hurt, but only the muscle not the ribs. I have adeno with BAC features.
Good luck.
- By Jim08
- Posted January 5, 2009 at 5:29 pm
- Report post
I was diagnose stage 1B BAC Jan 2007. I Had 40% of my right lung removed. Had Clear margins but “Just to be sure” I did Cisplatin & Navelbine chemo. A new tumor was discovered in my medialstenium (inoperable). Next came 33 hits of radiation with Carboplatin and Taxol, no change to the tumor. I did Tarceva & Avastin until Nov. 08.
Obviously my doctor didn't get the memo that BAC couldn't be treated with chemo or radiation. I would be in a lot better health now.
- By Jolene
- Posted January 6, 2009 at 2:36 am
- Report post
Each time I see the letters BAC I am anxious to read any information that can help me to understand this form of lung cancer. I went to the web site that Dr. West has and was impressed with the latest information on the two forms of BAC. My dad was 81, looked and acted 65. He had the type that is aggressive and had the mucous and foam. He was told by the first team to do radiation and chemo. He
was sent to St. Louis and there he was told no to both and just do Tarceva. He opted to do Radiation first and then Tarceva.
I will always think the radiation made his condition deteriorate much more rapidly. He did so well with his treatments, they gave him 35. As soon as the last one was done, his condition changed for the worse. His age, the fact that he was not able to have surgery and that he also had low oxygen saturation made his case very difficult to treat.
Some are living quality lives with BAC.
I DO believe he had his cancer for several years prior to Dx. I also believe that it is amazing how there are so many different opinions from specialists on just how to approach treatment of BAC. It is very scary when one places their faith in others, when "others" aren't even sure.
Thank you for speaking about your BAC. It is rare and I appreciate learning all I can from others on the form that took my dad from us. God Bless you all as you fight this disease. You have my deepest respect. Prayers Jolene
- By DrWest
- Posted January 6, 2009 at 11:30 am
- Report post
Diane,
I'd just add that, as someone with a particular expertise in BAC (I've led national trials on it and write review papers on it for the oncology community),
I'd emphasize that there is likely an important distinction between the more aggressive and less treatment-responsive form (mucinous, especially the pneumonic variant) and a typically more indolent form that often does respond quite well (non-mucinous). There are several posts about BAC on the lung section of the website for GRACE (www.cancergrace.org/lung), and I'd still say that we're learning more about BAC over time. There was remarkably little known about BAC 8-10 years ago, so almost everything has been learned practically in real time, and more with each new study. There were no studies dedicated to BAC until about 10 years ago.
Also, I'd consider it to be oversimplified misinformation that only the pill (I'm sure the oncologist is referring to tarceva) can be effective. It is often impressively active for non-mucinous BAC, but it's not really true that chemo isn't or can't be effective. It's not associated with many dramatic and long-lasting responses, as the EGFR inhibitors like tarceva and iressa can be, but it's also not true that chemo doesn't ever work. because the BAC lesions are typically more like clouds than golf balls, they are hard to measure for shrinkage, but you can definitely see responses to standard chemo, and a trial of the chemo drug alimta (pemetrexed) for BAC was just conducted because of some early evidence that this drug may be particularly active. However, we don't have results from that study yet.
So, I'd say that there are still many unanswered questions about BAC, but a definitive no is probably not completely accurate.
-Dr. West
- By magazine2
- Posted January 6, 2009 at 11:54 am
- Report post
Thank you so much for your information Dr. West. I am so new to this and while I am off work trying my best to do research, like should I follow a certain diet, etc.... Also I was told that this type of cancer is slow growing usually. Also that is is multifocal which means there could be specks I guess that is what it means. How often do you recommend getting a CT , I am almost 2 month post-op. I go back to the doctor this week for my checkup on the pain, etc.
Thank you again for responding to my question.
diane
- By DrWest
- Posted January 6, 2009 at 12:56 pm
- Report post
I don't think there's any compelling evidence that a specific diet makes any meaningful difference. We just usually recommend a balanced diet, without focusing on lots of any one thing or avoiding anything in particular.
If I don't have a good idea of the tempo of progression, I often start with a scan every 2-3 months, but if I have evidence that growth has been slow (such as little change between scans 4-6 months apart before the patient saw me), I think a longer interval of 4-6 months is often about right for indolent BAC. Really, I think it needs to be individualized. BAC can be as aggressive as other forms of NSCLC or worse, but many of the slowest cases of NSCLC progression happen to be people with non-mucinous BAC.
-Dr. West
- By marilynmm
- Posted January 6, 2009 at 12:59 pm
- Report post
Hi Diane,
I was diagnosed last February with BAC, stage 1A, 2 cm tumor, and had a left lower lobectomy at Hopkins.
I still have discomfort and some days I'd even call it "pain". I have a shoulder impingement from the surgery and still am working through getting full shoulder rotation back. I find yoga really helps. I have practiced for about ten years, but am a beginner again! That's ok.
It has definitely helped me get my flexibility and strength back. As far as diet goes, I was given a list from a nurtitionist for foods that combat cancer. Among the top foods: drink 4 - 5 cups of green tea everyday (brewed), use lots of garlic and onions, curry, fresh ginger, basil, turmeric for spices, drink tomato juice with each meal, raw broccoli and cauliflower and sweet potatoes and winter squash (cooked). Eat an orange or tangerine everyday, pomegranate juice, de-alcoholized red wine. Use beans and lentils with whole grains, soy milk instead of cows milk and small amats. of tofu and tempeh in place of meat. Oat bran, and oatmeal, dense, flourless whole grain bread, no butter or margarine use jam or pumpkin butter instead. Whole grain macaroni (pasta). Multi vitamins and fish oil tablets.
I hope this helps. You can email me at mmmartens@comcast.net if you want. Take care and heal well.
Marilyn
- By Munker
- Posted January 6, 2009 at 2:25 pm
- Report post
Dr. West. Thanks for your input on the diet. After my diagnosis I was getting myself crazy with all the advice but my doctors pretty much confim what you have stated. On another note, I am now more petrified of my diagnosis since the 2 oncologists i saw both made it sound like I had a pretty good prognosis. I was staged w/BAC1a no lymph node involvement and my upper right lobe was removed. My nodule (2cm) had not changed in one year but my Pulmonologist saw some "soft findings" so I decided to go for the operation. I guess now i have to find out if i have the mucinous or non-mucinous. I hope it's the latter. i have been advised to go with scans every 6 months. If any trial or studies come up I would love to participate.
- By magazine2
- Posted January 6, 2009 at 3:28 pm
- Report post
what is non-mucinous, I am not sure which I have, how do you tell.
I just want to make sure I am not eating something that the cancer cells like and help them to grow and feed them. (if that is even true).
My doctor thought mine was slow growing and I even could have had it for awhile before it showed up. My pulmonary doctor told me I was one lucky girl, that only about 5 percent of lung cancer is caught early.
I do still cough alot and wonder if that is forever or if the cough gets better. I know I have to do more deep breathing.
diane
- By DrWest
- Posted January 6, 2009 at 4:21 pm
- Report post
Mucinous and non-mucinous are ultimately assessed by a pathologist reviewing what the cancer looks like under a microscope. however, we can get hints from how it looks and acts. Mucinous is associated with a very productive cough (frothy thick sputum) and often has large areas of lung involved. Non-mucinous is more typically associated with tiny little nodules and small wispy areas of haziness, and while BAC is a lung cancer subtype especially common in never-smokers (about 1/3 of BAC vs. about 10-15% of NSCLC in general), I think nearly all of the never-smokers have the non-mucinous variety.
The idea that there is a clinically significant differences between these subtypes is just emerging, but the true BAC experts are coming to recognize this as a real and important distinction.
Here's a summary post about this:
http://cancergrace.org/lung/2007/05/14/bac-mucinous-and-non-mucinous/
My apologies if the pictures don't come out in the post (they don't on my browser), but if you click on them, you can see the images.
-Dr. West
- By magazine2
- Posted January 6, 2009 at 6:33 pm
- Report post
Thanks for the info. I can see where this can be a very confusing one to diagnose. I had a cough for at least 3 mos that would not go away, like a tickle in my throat, dry cough and I still have that cough off and on , which I hope will go away in time, I heard from reading different things on here that some people never seem to get rid of the cough and others do. What is really strange after reading your article, you said that this person could have had this for years and my best friend and my old boyfriend both told me in the same week after they found out, that years ago when I use to work out at the gym with him, he remembers me having a little cough and my girlfriend told me she remembers me having a little cough when we use to go out dancing. So I wonder if maybe mine was starting back then. Does that mean that it will be growing faster now or does it have any meaning. My doctor also told me, when I went to him, that I could have had this for a long time cause its so slow growing. Just kind of would like to get your opinion.
diane
- By DrWest
- Posted January 6, 2009 at 7:13 pm
- Report post
I don't know if the cough from years ago is related, but if anything, that's a favorable sign, because it indicates that if it's been around for years, the future time line is likely to be measured over many years. I don't think I'd presume that it's been increasing in speed of progression unless scans suggested that.
-Dr. West
- By magazine2
- Posted January 6, 2009 at 7:41 pm
- Report post
well that would be just great if that was true, we all would like to be around .. I have radon in my home and I am also dealing with that. I am 2 mos post-op and will be returning to work soon. Hopefully can handle that. I work at St Lukes Hospital for internal med doc and that is how I got diagnosed so quick and had surgery within 3 days of the diagnosis...
It was a hard hard painful surgery and I hope that I dont have to ever do it again., thats for sure.
diane
- By magazine2
- Posted January 8, 2009 at 1:53 am
- Report post
I was just looking over my surgical path report and saw something in there that I did not understand. It says"right upper lobe parenchymal margin involved by invasive carcinoma, all of the other margins are clear and lymph node staging pN (NO), also the distant metastasis cannot be assessed. it says there is no evidence of any malignaancy in 9 lobe spec, and again on the right upper lobe states adenocarcinoma is present at the cauterized parenchymal margin of the right upper lobe wedge biopsy specimen.
histologic type- adenocarcinoma multifocal with some bac features I am a T2. so dont understand when the doctor told me they got everything. ??
What do you make of this?
diane
- By magazine2
- Posted January 8, 2009 at 8:31 am
- Report post
Hi, I was just reading my path report and I also have adenocarcinoma with bac, the upper lobe was the bac and the lower lobe was the adenocarcinoma. It said all of my margins and lymph nodes were clear but what I did not see before and just saw now is that it says adenocarcinoma present at the cauterized parenchymal margin of the upper right lobe wedge biopsy specimen, i have a appt today with the surgeon for follow up and I will discuss it with him, I know I could not sleep night. I am going to post this and see if anyone knows what it means.
diane
Add to the discussion