Hello

[ChristineT]

After lurking for about 3 weeks I have finally decided to post my story. My dad (father-in-law) was diagnosed with NSCLC about a month ago. I decided to be his healthcare advocate for many reasons. I have been to almost every appt with him so far. He actually is taking the news pretty good and is ready to fight the fight. He has a very positive attitude. But as I lurk and read, and read, and read on this board and others, I am worried about how long his positive attitude will actually last.

Here is his story:

70 years old. He quit smoking 34 years ago and worked in a machine shop all his life. He had bladder cancer 10 years ago and they actually removed his bladder and fabricated a new one out of part of his intestine. He has had a history of either bronchitis or pneumonia once a year for the past 5 years or so. Once again, he seemed to come down with bronchitis in early summer. He let the cough go for a while (about a month) like he usually does until he finally went to the dr. Dr. confirmed bronchitis and prescribed antibiotics. His cough did not go away though.

He then went back to dr (a pulmonary specialist) and the dr. requested a chest xray. The xray showed “prominence in the hilar regions” which the report indicated may be within normal range unless he reviews them against prior chest xrays. After a review of prior xrays from 2003 “the left hilum is significantly more prominent”.

This prompted the Dr. to order a CT scan with contrast. The CT scan showed a mass in his left lower lobe measuring 3cm x 1.9cm. They also found some enlarged lymph nodes surrounding the mass.

A needle biopsy was done to determine if the mass was cancerous. It was and they determined it was NSCLC.

Next, PET scan was ordered. Again, this showed activity in the lymph nodes surrounding his left lung, in the middle of his chest, and a couple of suspicious lymph nodes on the right side with low level activity. No other spots showed up.

He then has a brain MRI which came back clear.

We also had a surgical consult. The surgeon performed a bronchoscopy and a mediatstinoscopy and determined that surgery would most likely never be an option. Mainly because of where the tumor is he would need the entire lung removed and at his age and considering some other health problems he would not tolerate life with one only one lung. The good news is that the he did biopsy a few of the suspicious lymph nodes and they came back negative.

The Dr.s are staging it at 3a/3b. I guess it is difficult to really know if the cancer is in the lymph nodes and which ones it is in.

His oncologist decided to do 6-7 weeks of low does chemo once a week for 2-3 hours. And radiation every day, M-F. He claims a high dose of chemo probably wouldn’t yield any better results and would put his body through hell in the meantime. He also stated that radiation works better when chemo is also given. I need to find out what his chemo drugs will be.

He starts his treatments this week.

So, if you got this far, I have some questions!

Does it sound like they are staging his cancer correctly?

What would a first line defense chemo treatment be for someone in my dad’s stage?

Is the dr. correct in stating that a higher chemo dose probably won’t make much of a difference?

I know I have a ton more but can't think of them now. THANKS for reading if you got this far! I have been reading all of your stories and my heart just breaks for each and every one of you. What a horrible, horrible disease this is. Lots of prayers to all of you and your loved ones!

[recce101]

Hi, Christine, welcome to the LCSC! Most of our U.S. mainland members are probably asleep at this hour, but within a few hours you should be hearing from some of them too. It's apparent that your lurking and other reading have been well directed, as you have a very good initial grasp of the situation. Your father-in-law is certainly fortunate to have you as his advocate!

You mentioned your father-in-law's positive attitude and your hopes that he can maintain it. I agree -- attitude, expectation, mind-body connection, whatever you call it, is extremely important when faced with a disease such as cancer. Speaking personally, since I was 71 at diagnosis, with grown kids and a granddaughter in college, I've found it fairly easy to keep a positive attitude so far, and I believe I can maintain it if and when I get to a rough spot in the road. If I'd been closer to 30, just starting a career and family, it would have been a lot harder. At 70, I think your father-in-law can take this challenge in stride and that he has a great chance of fulfilling a goal something like mine -- to keep this thing beat back and eventually die with cancer but not from it.

Now there are a couple or so things that would be nice to know for a more complete picture:

1. Do you know the specific cell type? The three primary cell types within the NSCLC group are adenocarcinoma (including BAC), squamous cell carcinoma, and large cell carcinoma. Although they're similar enough to be grouped together, they're also different enough to call for some variations in treatment.

2. Assuming the target of the radiation is the tumor in the lower left lobe (I didn't see anything else in your writeup that it could be), what is the reason for the radiation? A typical reason would be that the tumor is on the verge of pressing on some vital part such as the spine, a large blood vessel, the airway, etc., and it's necessary to prevent that even though some good lung tissue may be damaged by the radiation. (I haven't had radiation, so I'm not speaking from personal experience here.)

3. Is there a pleural effusion (fluid between the lung and the chest wall), and if so, was anything said about its characteristics (presence of malignant cells, color, exudate vs. transudate)?

You asked about staging. I've provided one of the better references on the TNM (primary Tumor, regional lymph Node involvement, Metastatic involvement) staging system for NSCLC just below, and you're probably in the best position to determine if IIIA or IIIB sounds appropriate based on the discussions you've heard:

http://www.emedicine.com/radio/topic807 ... nm_staging

The answer to your question on first-line treatment would depend to a degree on the cell type.

About the chemo dose, if radiation and chemo are being given concurrently, the chemo dose is generally reduced in strength but given more frequently than otherwise, e.g., weekly instead of every 2 or 3 weeks. I believe there is good evidence that radiation is generally more effective if given in combination with chemo, but most patients simply can't handle them both at the same time if the chemo is full strength. Someone in a weakened condition is less able to fight the cancer than a person who is relatively strong, so giving a higher dose than can be reasonably tolerated becomes counterproductive. There may be other factors I don't know about that caused the doctor to use the words he did.

Well, I did it again, got into some areas clearly above my pay grade. For technical questions like these, after you have the other little bits of information I mentioned, you might post a question for Dr. Jack West at onctalk.com. He's a Seattle oncologist, an internationally known expert on lung cancer, who amazingly answers these types of questions from people like you and me, usually within 24 hours. He occasionally posts here too and also hosts a live chat session for our members every couple of months. A lot of us use the same login name on onctalk.com as here. A priceless resource!

Best wishes and Aloha,

Ned

[Ry]

Christine-

I can't add much to the wonderful answer you got from Ned. If you read my profile you will see that my husband is also a Stage IIIb and has been around a long time now. There are many chemos now that are a fairly easy infusion for someone older and already having some health issues like your dad. Do you know which chemo he is starting?

You sound like a great advocate for your dad and that is so important with this disease.

Welcome to the board

Rochelle

[trish2418]

Welcome, Christine, and I'm so sorry to hear of your father's diagnosis. I'm a 2-year stage IIIB survivor and I plan to be around for many, many more years. I'm sending lots of prayers that your dad's treatment is successful. Keep us posted.

Trish

[tiredmom959]

The posts above were great ... the only thing I wanted to add is that being your f-i-l's advocate is the absolute best gift you'll ever give him and the rest of the family.

The information a patient with cancer needs to process is overwhelming, so to have someone help them understand their treatment and deal with all the details is essential for a good outcome I think.

Good luck to you and your family.

[Don M]

Welcome Christine: If your father-in-law has lymph node involvement, chemoradiation is the best treatment. It sounds like the PET scan showed uptake in the lymph nodes at the mediastinum and so he probably is staged correctly. I have heard that PET scans have a 90% reliability for detecting cancer in mediastinal lymph nodes.

However, they could be inflamed for some other reason though perhaps as a result of his recent bronchitis. I think you might go for a second opinion just to pin down the lymph node involvement if there is any doubt at all. If the lymph nodes are clear. He could have cyberknife surgery and be cancer free.

http://www.cyberknifesupport.org/forum/

Don M

[ChristineT]

Thanks for all of your wonderful responses and thoughts!

Ned - You have a wonderful attitude and I hope my dad feels the same way. What you said makes lots of sense. Thank you for the staging information and I will check out onctalk.com

I don't know the specific type. The oncologist basically said it doesn't matter too much because treatment would be the same. I didn't particularly like this answer but took his word. The biopsy pathology report said "the tumor cells are positive for CK7, and negative for CK20 and TTF1". Does this mean anything?

I am thinking the reason for the radiation would be to shrink and hopefully obliterate the tumor? As far as I know it is not pressing on anything but his cough is pretty bad so I know they want to get that under control.

There is NO plueral effusion.

I think the reason for the low dose chemo is that my dad won't tolerate any high doses. He has a-fibrilation and high BP. The dr. did mention it would probably do him more harm then good to get a high dose.

DonM - My dad mentioned cyberknife to the dr and he said he wouldn't be a candidate. They are saying the lymph nodes are involved but can't be 100% positive they are cancerous unless they biopsy all of them. Once the surgeon got in there and saw the tumor he felt he wouldn't be a candidate for surgery so he only biopsied a couple. Those did come up as non-cancerous.

See, there are so many conflicting things and I want to beleive that my dad's oncologist is doing the right thing. He is going to one of the best groups in the area and his dr actually came from Sloan Kettering. I hate to put him through a second opinion at this point, we just want the treatment to start already! I just feel like I don't have ALL of the answers I should at this point. But maybe having ALL the answers will make no difference? I am the type that NEEDS TO KNOW though. I research things constantly.

Not sure what to do from here. Thanks again everyone.

[fillise]

Christine--Welcome! I see you've already gotten some excellent advice, so I won't add much except to say that serving as your FIL's advocate is the best gift you could give him. His attitude will go along way, but do recognize that he will experience ups and downs. I think all of us caregivers have learned that the hard way! I've found that it is important to be suppportive but not to be dismissive about their fears or concerns. Sometimes it is a great gift to let our loved ones express their fears and have a little cry every now and then so they can deal with it and move on.

This is a great group, full of useful information and support.

Susan

[dadstimeon]

Welcome Cristine,

Glad you found us, stay with us and keep us posted.

Rich

[recce101]

I don't know the specific type. The oncologist basically said it doesn't matter too much because treatment would be the same. I didn't particularly like this answer but took his word. The biopsy pathology report said "the tumor cells are positive for CK7, and negative for CK20 and TTF1". Does this mean anything?

Christine, I've seen articles discussing use of the CK7, CK20, and TTF1 "immunohistochemical stains" in trying to determine if an adenocarcinoma is a primary tumor and whether it might be one of the unusual variants like BAC, but I won't hazard a guess on what your FIL's pattern implies. I suggest you post a question for Dr. West, if you haven't already. I've received answers from him even on a Sunday afternoon! If you lay out all the known facts and he comes back with something like "your oncologist's analysis and plan of treatment seem very appropriate," you have cause to relax. But while he's not likely to directly contradict what your oncologist has said, if he hedges and goes into an Alan Greenspan type of on the one hand, on the other hand discussion, that would tell me that a second opinion might be justified. Yes, it's a hassle, but at least one of our members credits the fact that she's still alive to getting a FOURTH opinion!

Aloha,

Ned

[carolhg]

Hellow Christine,

I had low dose chemo (carboplatinum/taxol) weekly and daily radiation. After that I had surgery. My surgeon removed my upper right lobe, 20 lymph nodes and one rib bone and all specimens tested negative for cancer. That was in July 2005. My scans have been clear since surgery. Praying that all works out well for your father.

Carol

[wiesia]

Yes, for most treatments it does not matter what type of NSCLC you father has. It is only recently that we have learnt that Tarceva (for example) works differently on adeno than on squamus. If I were in your shoes I would not worry about it now and if you ever need to know it for further treatments you can always ask them to check it (they should have enough tissues).

[Shelley (MLC)]

Hi Christine, welcome to the boards. Gosh, you've received some great advice. Keep asking questions and lets us know what we can do to help. Shelley

[ernrol]

Christine,

Welcome to the site. You have already received lots of good info. I am just another one of those 70 year people that tries to keep a positive attitude. I had 18 month of remission and I am now taking chemo again. I look at this of just part of the process of living with cancer.

Stay positive,

Ernie

[J.C.]

Hello Christine,

I think you got your questions

answered already.

Welcome

Jackie

[ztweb]

Christine,

My dad's diagnosis was quite a bit different, so I have no answers for you, but I wanted to know that I welcome you with open arms to this amazing forum.

Blessings,

Jen