Who should I trust? BAC - 1252052

greensmythe
Posts:6

On November 12, 2012 I was diagnosed with Stage IV NSCLC Bac (which I have since been told by my current oncologist is no longer the correct term. After going for two opinions and not comfortable with either, I chose a third option, an integrative approach with a team approach including an oncologist, naturopathic oncologist, dietician, and cancer counseling services.
Because it had been six weeks since initial diagnosis this new onc requested a new CT scan that was conducted on December 27.
Yesterday I had my appointment with her and saw my scans (for the first time) this scan showed that there had been no progression and in fact one of the tumors had shrunk (no significantly according to oncologist). The cancer is confined to my lungs and has not spread to any other organs. There are tumors (all under 1 cm in both lungs) and one that that was 4 cm but has shrunk to 3.7cm. –this is why it is classified Stage IV.
The first two oncologists were in a big rush to get me into chemotherapy. I am asymptomatic, with a slight cough occasionally. The SVT that originally brought me to the ER in early November has been addressed and my cardiologist raised the dosage to control that and I have had no problems since. My weight is stable. I am eating healthier, and not as much. I have been told surgery is not an option because the tumors are too small. I have been told that I should not wait until I start to cough up blood to start chemo. I have been told that in approximately 6 months I might have ‘difficulty breathing’ without chemo. I have been told that with chemo I have a 40% chance of remission.
This current oncologist suggested chemo to begin next week, carbo and alimpta. Preceding that suggestion she recommended I talk this over with my family since going from no symptoms to the side effects from chemo could lend a big change to my current life.
I feel like I am in a fun house and there is no one to trust. Early in this journey I was told the harde

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Reply # - January 1, 2013, 11:11 AM

aunttootsie001
Posts: 324

I give you credit, every minute my tumor was still in my Lung I was desperate to get it out! And my Pumnalogist ordered a Pet Scan that confirmed the mass. Lymph nodes had Cancer but it wasn't big enough to show up on the Scan. So they were thinking stage 1. Until after Surgery and then it jumped too 3a after Surgery on Aug. 29. It seemed like forever. so I wouldn't wait too long especially since it is in both your Lungs!

Reply # - January 1, 2013, 12:43 PM

catdander
Posts:

greensmythe, I do so sympathize with your confusion and desperation though I don't have cancer my husband does and I've communicated with many people who do and doctors who care for them. It is such a complicated problem and there aren't easy answers because there is too often not one answer.
aunttootsie is right to say you can wait too long and miss the window of opportunity for treatment that can prolong and add quality to your life.
But each person is an individual case usually with several options for treatment from which to choose. I wonder is one or more of your opinions came from a lung cancer specialist. They are most up to date on best practices as they relate to your individual case.

Knowledge is power, Here's to knowledgeable and helpful decisions in 2013,
Janine
forum moderator

Reply # - January 1, 2013, 12:55 PM

catdander
Posts:

You're smart to be asking how BAC can be treated. It seems that non lung specialist sometimes go down the wrong path.
I think these may shed some light on what's going on. We have an extensive library on the subject. Use the drop down menu above in the big green boxes labeled "Cancer Info" then go to right column for "BAC". Or search for BAC on our search feature (to search you may need to log off first)

How BAC is treated, http://cancergrace.org/lung/2011/11/29/bac-today/
On the basics of BAC, http://cancergrace.org/lung/2010/07/09/basics-of-bac/

Reply # - January 1, 2013, 08:09 PM

Dr West
Posts: 4735

I wanted to suggest that you might want to check out this video I did just a couple of weeks ago, really focusing on the very issue of whether we should definitely recommend immediate treatment for multifocal BAC (or whatever you call it now):

[video]http://www.youtube.com/watch?v=XFCwsytiDuU[/video]

There is no good evidence to speak to this question, but I am the author of several of the definitive references on management of advanced BAC for the oncology community, and I can say that not only is my practice to try to get a sense of the pace of the cancer's progression before starting treatment in an asymptomatic person, this approach was also the consensus of the co-authors of one of the recent references I wrote with several renowned colleagues from other institutions.

Because it isn't especially unusual to see a very indolent progression of BAC, potentially over many, many years without doing ANYTHING to treat the cancer, there is good reason to be very judicious about starting chemo. In someone without cancer related symptoms, you can be sure you won't make them feel better, and you'll likely make them feel worse by starting treatment for an asymptomatic, slow-growing process. It's also very hard to envision that postponing treatment until there are symptoms or you see convincing evidence of meaningful progression will lead to any worse outcomes. Instead, you just prolong the time that someone feels well, ,and it's even quite possible that some of the people in whom asymptomatic, indolent cancer is incidentally discovered might never even need treatment, and it may never limit their survival.

There is certainly nothing about complete non-progression on a follow-up CT scan that would lead me (or any objective judge) to conclude that we should predict you'd have symptoms from the cancer in the next few months. It could be years, or perhaps never.

-Dr. West

Reply # - January 2, 2013, 07:33 AM

greensmythe
Posts: 6

My original CT Scan that led to the initial diagnosis taken on November 5, was no different than the CT scan that was taken on December 27. The only 'symptom' I have is a dry cough that I have had for years. My energy level is the same, my weight is stable. I do not feel sick in any way except for the stress of being told I have lung cancer and have less than a year to live ( first doc diagnosis). When I mentioned to my current oncologist that I have no symptoms and feel fine, she said that is how it goes-but she is a general oncologist and specializes in ovarian cancer. It appears to me from all I am hearing and seeing about this type of cancer that survival with or without chemo is up in the air- and with chemo would just be sick most of the time.

Reply # - January 2, 2013, 01:41 PM

double trouble
Posts: 573

Dr. West, I wish my doctor's had sat me down in front of a monitor and played this video the day I was diagnosed. Great job, informative, understandable, compassionate. Thank you.

Debra

Reply # - January 2, 2013, 10:05 PM

Dr West
Posts: 4735

Thanks -- that's very kind of you, and great feedback to reinforce that it's worth me doing these.

-Dr. West

Reply # - January 3, 2013, 06:12 AM

greensmythe
Posts: 6

Dr. West,

I am going to take your reply to my oncologist next Tuesday to see if this can lend some insight to how to handle this in the future. Is that allright to do? I had shown her another one of the articles you wrote and she just put it aside. This is what happens a lot it seems when I have brought in information on my own.

I understand I am not a doctor, but it would be great if I was not always met with a condescending smile and shake of the head. Her last words to me were, " Getting on the chemotherapy will give you time to prepare...."

Gloom and doom- and here I am feeling just fine.

Reply # - January 3, 2013, 06:55 AM

aunttootsie001
Posts: 324

Had we asked if you have seen someone for a second opinion? Sounds to me you need a different Dr. I was so happy my first Oncologist (who retired) was not of the belief of giving a Prognosis! Who's to say how long we will live. I like you had good health except for a chronic cough which my first general Practioner dropped the ball on. I still am in decent shape. I walked 3 miles every day this past Summer and on some days even more. I've been a Cancer Survivior for a year and a half. I would not have it if someone told me I only had a year to live! I'd leave that office and find me a Dr. Who was optimistic! I'm willing to bet Dr. West doesn't tell his patients point Blank that kind of info? Did you ask what your prognosis was? I feel Only God really knows when our time is up and I have a Ton of living to Do so I choose to do whatever it takes to give me the most time! If that means feling poorly for a few Days out of a month then so be it! That was basicly it. When I had my Chemo I felt fine the first Day and my third and fourth day were the worst. But it was doable. Then each day after got better. Bite the bullet. Some of the Chemo's aren't that harsh. If you take the nausea meds round the clock it is much better! Sorry if it sounds like I'm being harsh. Just trying to give you more info to help you make your decission. Did they test you for Mutations? If not you might seek a Dr. For that. I went for second Opinion to the Biggest Cancer Hospital in our area The Cleveland Clinic. They were like my Dr. Here and agreed with the treatment. Good Luck Sweetie!

Reply # - January 3, 2013, 06:59 AM

aunttootsie001
Posts: 324

Was re-reading your original Post and at this time they don't think it is in your Lymph Nodes. At least as far as they can tell. That is a good thing! If your going to do treatment I would try and do it before it spreads to your Lymph Nodes. Just my opinion. I look forward to hearing what you decide to Do! God Bless!

Reply # - January 3, 2013, 07:25 AM

greensmythe
Posts: 6

I have been to the IU Simon Cancer Center in Indianapolis and they did the mutations testing there. I was negative for that- I was set up to start chemo with them, but was going to do it here in my hometown with the doctor from Indy overseeing. I do not want to go into all the reasons for not wanting to use the hometown facility-but suffice to say that the originating doctor who gave my first diagnosis in my hometown told me this, " You have about a year, you are inoperable and there is nothing I can do" He then went on to explain chemo, etc.

I have not been too lucky with doctors- I have pretty much settled on IU Goshen, but that doctors long and sad face is not too encouraging either. However, no matter who says what, the diagnosis is correct ( three oncs said so)
That is why I finally wrote here, after finding Inspire.com and What's Next-

Reply # - January 3, 2013, 07:56 AM

aunttootsie001
Posts: 324

My original tests after surgery came back resistant to all the drugs for Chemo at that time and after Chemo and Radiation the second opinion Dr. Tested me for mutations and at that time I was still Negative for mutations. Then when my test came back positive for Cancer Cells in the fluid in the lining of my left lung she tested me again for mutations and it came back positive for ALK. So I'm presently trying to take the Xalkori.
You never know with this tickled monster! If you haven't read my recommendation to read Richard Bloch's book " Fighting Cancer" it is free by goingvto Richards. Website and order it! It was a big boost to me! Think Positive and don't let anyone tell you any negative advise!

Reply # - January 3, 2013, 09:25 AM

Dr West
Posts: 4735

It's certainly fine to bring whatever documentation you have from here. Of course, your doctors may or may not be interested in that information, but I think that over time, more doctors will come to respect the input of patients who have learned about their own medical issues and have thoughtful input about the treatment plan.

My hope is that people will be able to choose among doctors and soon even no longer be limited by their geography by using telemedicine services to work with a specialist who is right for them, even if they aren't close by.

-Dr. West

Reply # - January 3, 2013, 09:48 AM

catdander
Posts:

aunttootsie, Your advise is so encouraging and uplifting. I hope you continue to help those on who come to Grace for real information. If I may add to your discussion to make the point of doctors who give prognoses. Every doctor on this site who has mentioned prognosis has said that doctors are notoriously bad at it. They only give it if the person demands one and with much caveat. Nobody knows.

greensmythe, have any of your oncologists been a lung specialist? I think you understand that BAC can be very indolent and as such be treated with the idea of a slow steady turtle beats the rabbit. But I'd want to make sure the oncologist was on the same level of understanding as the most up to date lung specialist. And like others here you will be much more happy getting opinions from a doctor who will have conversations with you about you disease.

One more point I've learned on Grace. It doesn't really matter where you get your chemo treatment. The drugs are the same and the checks and balances are uniform. (my own argument here would be that nursing care could be different from place to place). It has been suggested for people in a situation similar to what you are describing to find a doctor who suites your needs and see them periodically but get chemo at the center near you. I'm not sure what the relationship is called, they would be your second opinion doctor?

happy new year,
Janine

Reply # - January 3, 2013, 10:41 AM

laya d.
Posts: 714

greensmythe:

Over the years, there have been many many many discussions here on GRACE re prognosis and statistics, etc. One of the most profound things that has stayed with me is when someone very eloquently said that patients are not cartons of milk with expiration dates stamped on the bottoms of their feet. The statistics that are spouted off come from very large populations. Who knows where exactly you or anyone else (as an individual) falls within those ranges. Plus, a lot of the data for these things was collected before the newer meds that we now have came on the market. Don't hang on your doctor's words. He doesn't know specifically as to you. Noone does. And, he obviously is not a very good communicator. There are many many many examples of people here on GRACE who have outlived these so-called statistics by years (and are continuing to do so). And GRACE is a relatively small world in the lung cancer universe. I'm not saying you should be an ostrich and bury your head in the sand (unless you want to ;o) ). I'm just saying that the numbers are irrelevant to you specifically as an individual. They mean nothing.

I hope you continue to do well and feel well for a long long long long long time. . .

Laya

Reply # - January 3, 2013, 11:19 AM

greensmythe
Posts: 6

I would really appreciate the name and a way to contact a lung cancer specialist in or close to Fort Wayne, Indiana.

Reply # - January 3, 2013, 11:19 AM

aunttootsie001
Posts: 324

Hi Laya Dear! You took the words right out of my mouth! So glad your sticking with us and sharing your wisdom! Lord knows your Mom and you went thru a lot! I think about you dailey!

Reply # - January 3, 2013, 04:14 PM

Dr West
Posts: 4735

I think that Dr. Nasser Hanna at IU in Indy is excellent, and Chicago also has several terrific lung cancer specialists, including Drs. Jyoti Patel or Melissa Johnson at Northwestern, Dr. Tom Hensing at North Shore/University of Chicago, Dr. Ravi Salgia at U. Chicago, or Dr. Phil Bonomi at Rush. There are even others, but I don't know that you need 8 names.

I'm sorry I can't offer anyone closer, but the only way I could really be confident of the quality of the opinion you'd get is to give the name of a nationally known specialist I know personally.

Good luck.

-Dr. West

Reply # - January 26, 2013, 08:09 PM

craig
Posts: 330

greensmythe,

Can you be more specific about which mutations were tested? I assume they tested for KRAS, EGFR, and ALK. If those all came back negative, did they go on to test for the rarer ROS1 (like my mBAC-behaving adenocarcinoma has)? (BTW, another once called RET looks promising, too. The optimal profile for ALK, ROS1, and RET is a younger-than-average never-smoker adenocarcinoma (incl. BAC), although at least ALK and ROS1 are sometimes found in people in their 70's and in smokers.)

Best hopes,

Craig

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