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How many of you have been diagnosed with BAC. ?
Are you watching and waiting and watching to see if the tumors are growing or staying put? What type of treatment are you receiving for it? I just would love to hear from any of you that have been diagnosed with bronchoalveolar carcinomas
thanks diane
Cancer Surgery Burns Watchful waiting Anxiety Pneumonia Menopause Tarceva Targeted therapy Asthma Avastin Sweating Breast cancer Pain Lung cancer Depression
On May 1, 2009, I had a VATS biopsy which showed BAC, so my LLL lobectomy was done that day. I am just now feeling a bit less pain and have actually finally driven myself places the past two days. Mine was a nodule found after my breast cancer dx, did not grow, no one really thought it was cancer, BUT it is. It was not active on the PET and did not grow from Sept-May. Yes, I am interested in a study in Los Angeles. I see my oncologist about genetic testing of the tumor on Monday. So far surgery is my only treatment as the nodule was 1x1x1.4 cm, stage 1A. (Wondering too if my BRCA2 gene is related to this! And having the house tested for Radon next week.)
Thank you for your info.
Blessings,
n
Hi linda, just hit reply under my message and it will be on here.. my reg. email is dmaas22913@aol.com if you would like to write to me there.
diane
OOps, as you can see, I'm new to this! I thought I was responding to Dr. West. Hi Magazine 2. My email tells me I have a message from you, but I can't figure out how to respond! Can anybody help guide me to answer? Thanks-Linda
Hi Dr. West,
My name is Linda and I have been reading your comments for months concerning BAC. I'm so happy that both you and my doctor are saying the same things concerning my BAC. My question is, have you ever known of a patient or patients who have lived more than 15 years with BAC?
Is this possible with Stage 1b BAC ? Of course everyone is different, just looking for honest answers. Thanks-Linda
Hi, well thanks for the email. I feel ok. I do get tired after work and dont seem to have much energy like I use to. I did not have any treatment after my surgery, did u? I am 68 and I tend to look younger than I am which is nice, when I was younger I did not like it of course. lol
So what is involved in this bac study. ?? I live in MO. where do you live? Financially I could not contribute, since I live from check to check. Please let me know what is involved... I think it would be great as this is really needed... give me more details...
How are you feeling What do the doctors tell you about your situation, what you should do. How often do you have scans etc...
Looking forward to hearing back and learning much more about this.
diane
Hi Diane,
I also have BAC cancer. I read your blog several months ago. At the time my head was spinning with returning to work after my surgery. I'm sorry I didn't contact you. How are you feeling now? You look very young in your picture. Did you say how old you are? I am 53 yrs. old, never smoked, both my parents died from lung cancer and I'm currently looking for other BAC people who want to join, organize, a BAC group to be studied at one of the top hospitals in LA, CA. We now have 10 people who are interested in joining. Are you? I have an appointment tomorrow to discuss further with my DR. exactly what we need to launch this idea. He has been guiding me to amazing professionals who have given me so much information and hope. My feelings are, if this is the hand I am dealt, I need to do as much with it as possible. In my mind, the only way the medical and pharmaceutical industry is going to deliver more options and tools to us is for BAC patients and all our supporters to advocate for research, funding and education as to what BAC is. Of course all lung cancers need this too. I am choosing to focus on BAC at this point which will naturally reflect on all kinds of lung cancer. I do understand the stigma associated with lung cancer and my passion to bring attention to this disease is stronger than ever. I am lucky to be in the early stage 1b so I have more time and now, energy, to help build this. I welcome any and all people who want to help. Thanks-Linda
Thanks, for the reply. I had a cough before and after surgery, which is almost gone. But I am always tired it seems especially at night after work. I have always had trouble off and on from childhood till now of sometimes cannot get a yawn out , Since I am missing part of my lung, it does feel different since my surgery.
I am for sure going to change my next scan back to a cat scan, as I know in my heart that a chest x-ray is not the way to go.
I just wish there was more research on the eating thing, I have a major sweet tooth and I know it is the sugar thing , but I have given up soda and only drink water and orange juice.
thank you so much for being here.
diane
thank you so much.
Cancer can do anything it wants to, and occasionally we do see a BAC change its behavior, sometimes going from very indolent to a little faster, but still on the slow side. If that happens, that's a time when I'd recommend initiating treatment.
The most common symptoms would be an increasingcough and/or shortness of breath, but I'd still say that the vast majority of patients have their progression detected on a scan long before they'd feel a change.
-Dr. West
thank you This will be my 3 day off project... of course my main interest is bac features since that is what I have. So its interesting to talk to people with the same thing and see how they are doing and what treatment if any they have had. I was really surprised when my cancer doctor told me just to do a chest x-ray this time and then next time cat scan, but he did tell me that if I wanted to I could do a cat scan instead.
He said he has not seen any thing in my cat scans and just feels it really slow growing , so that is why I asked if it could just turn around and grow really fast all of a sudden, have you seen that happen or does it usually just gradually creep up. Are there any signs that you can tell that you may know if its growing, etc...
I know questions that are hard to answer..
diane
Diane,
Your point is very well taken. We are doing a site makeover in the coming weeks, and one of the main goals is to make it much easier for people to see exactly how to post new questions in new topics, as well as find what they're looking for around the site in general. In the meantime, though, there's an FAQ that can help highlight the process we have now:
http://cancergrace.org/grace-faq/
The issue of how to start a new discussion topic is the fourth topic down.
-Dr. west
Hi
When I go to Grace, I have trouble posting. I cannot seem to find the link to post or start a new topic. Its clear on here to do that.
So what am I doing wrong.??
Diane
Also, please note that I'm not confident that I can reliably address questions here; I cover them when I can, when I see them, but if you'd like me to try to address something, you can definitely post at the GRACE website forum, www.cancergrace.org/forums.
Thx.
-Dr. West
There is no clear standard. I think tarceva's an option, but so is chemo. The emerging evidence is that EGFR mutation status counts more than smoking status or the particular cancer type in predicting whether chemo or EGFR-based therapy is a stronger first choice. I've written about that here, if people are interested:
http://cancergrace.org/lung/2008/11/03/ipass-mutation-diffs/
-Dr. West
Thank you so much.. I think I will have the doctor change it to a cat scan.. So if you see a 20 percent change, then what type of treatment can be used. Is it time to go on tarceva then, or what.
Its just so scary for us when we get those scans. I hope that the sweats is not my cancer, but we just never know. Its been almost 8 months now since my surgery,
I do know x-rays dont show nearly as much as the cat scans. Can the bac suddenly just change from slow growing to fast.? Does this happen alot.
Again thanks so much for being there for us to answer these questions. It just helps so much to know there are Doctors like you that care so much.
diane
I think a chest x-ray (CXR) is better than nothing but provides far, far less information than a CT, and I rarely use a CXR to monitor BAC, where much of the time we need to be looking for rather subtle changes that we wouldn't have a prayer of seeing on consecutive CXRs.
My definition of an indolent cancer is one in which you basically need to squint to see any change between scans done about 3 months apart, or more. If you can readily appreciate a change, and I'd say a 20% change between consecutive scans is a a real change, then I don't think it's so indolent that waiting is generally the best option when there are potentially effective treatments on the table.
As for sweats, cancer can definitely be associated with sweats, and particularly night sweats, but other common possibilities are menopause or other hormonal changes, or an infection. I wouldn't consider the development of new sweats as a strong indicator of progressing cancer in the absence of scans showing this.
-Dr. West
Hi, well thank goodness you did get treatment then, yes like he said we are all different and have to be treated accordingly.
I am glad you are here and hope you will be for a long time. I see on here alot of people did very well on tarceva.
diane
Thank You Dr. West, Obviously I must have the quicker growing type, and yes they are stubborn, I am being treated at Northwestern In Chicago and am very pleased with my Dr. I seem to handle chemo pretty well problem is so does the beast. Hoping Tarceva gives it a tougher fight than the last drug I was on.
Diane, Like we always say everyone is different and as Dr West said there is no fits all treatment. I truly think at the rate it was growing that I would not be here today if I stayed with the 1st Onc and just watched it grow.
Staying positive
Linda
Hi, well thanks for the email..I did have the open surgery and they removed the lower left lobe and wedge out 2 things on the top right lobe. So I did pretty good after about 4 months. It was a veryhard surgery and I thought I would never feel good again.
all margins except one were clear and no spread, lymph nodes all clear...So since then have had 3 cat scans and so far so good.
Good for you, it sounds like your doing great... Keep it up.
diane
Diane,
I had a left upper lobectomy April 20 - VATS so the ribs weren't cut. 3 days in hosp., and recovered pretty quickly. Stage 1A BAC, and no chemo was recommended (no evidence that it helped prevent recurrence). I'm up near Glacier Park now - doing a little hiking. Yes, I'm short of breath on the uphills but will keep at it to increase my capacity.
Just wanted to mention that sleep is very important for healing and emotions, so don't be adverse to medication to help you sleep. I really feel for you because of the inoperable dx. Sometimes I can forget about it, but when I think about my first followup CT, I just feel sick and fearful. However, I'm thankful that mine was discovered early (a fluke pain but thank God my PCP suggested a CT scan "just to make sure". Hang in there.
Alisa
Hi Linda
thanks for the response and did you see Dr Wests reply that he sent above yours. That man is amazing and donates so much time to all of us cancer patients and we are so lucky to have someone like him that cares...
Well hopefully yours stays under control.. are you going to keep having chemo?
That was kind of fast to grow, but if you noticed there are alot of people on here that have survived with alot more tumors than that. So we have to hang in there and believe and i think our attitude has alot to do with it too...
Keep in touch and let me know how you are doing and I will do the same.
diane
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