Question about mets, spreading, etc.

[Guest hearrean]

I'll try my best to word this question to where it makes sense. I read the profiles of so many of the members of this forum & there are a lot of folks who talk about being diagnosed with Stage III,IV, advanced & even where there had been a tremendous amount of spreading even before their treatment began. But then again I'll read those same profiles where that person is responding or has responded well to treatment even to the point in many cases where there has been long-term survival.

But then I meet with a Doc like I did yesterday who would not give me any words of encouragement and simply kept saying that quality of life is most important. In other words he would not even commit to a slight possibility of a cure or long-term survival, etc. Don't get me wrong; I'm not looking for the Dr. to give me false hope, but since a big part of this battle is mental attitude, I would think he would at least try to help me maintain a positive mental attitude. When I hear someone tell me that "quality of life" is most important, the 1st thing I interpret of that is that they want to make my last days comfortable. That may not be what he meant, but it was the way I interpreted it. I simply do not want to hear that! FYI: He indicated my chemo regime would be a milder dosage so I shouldn't have many side affects. Now is this because my type of cancer responds better to chemo than some others or is he saying something else? I should also say that he showed me a very small nodule (less than 1 cm) which was further to the right of my primary mass & I think he may feel this is a spread. But he said that would be determined by my response to Chemo. It was almost like he was saying that we don't want that nodule to respond to the Chemo because that would mean it was a met. And if it had spread here, then there would likely be spreading elsewhere that we just couldn't see.

Here's my point; I would much rather have aggressive treatments & be sick for a time because of it if it means a better chance of survival than have mild treatments if my chances are much lower. Now this may just have been this Dr's personality as compared to someone else. I just wanted to run this by everyone to see if my thinking makes sense or, am I again over-thinking this thing. Being an Engineer, I sometimes tend to do that. Sorry about being long-winded....

Ken

[Alisa]

Ken, have you considered another opinion? I know MD Anderson is a great hospital, but with all your concerns, I would go to a completely different comprehensive cancer center and get another opinion, just to ease your mind. Most hospitals work with their own protocol, so you may find something for you elsewhere, you never know.

I went for 3 opinions from 3 different hospitals before I chose my course of action. I think it's that important if you feel any hesitation about your treatment.

Feel free to email me any time at abrenes@thelen.com.

Take care,

Alisa

[Muriel]

Well, that experience didn't leave you any better off or improve your quality of life. There are a couple of things you could/can do. The first, of course, is to find an Onc. that you feel better with and who understands your wishes better than this one. The other option is to be very, very assertive (but not yet, aggressive) and tell the Onc how you would prefer (or, in further conversations, demand) to have your lung cancer treated. I think you are saying that you want very aggressive treatment. Fortunately, he isn't telling you how long or short your life is going to be. He doesn't know. He should, however, answer your question re: why he's chosen low dosage - quality of life or effectiveness. It does appear that side effects are his interest, rather than effectiveness.

The fact that he offers no encouragement concerns me. I wouldn't want him to lie, but I'd expect that he would be trying to do everything possible to help you re: both length and quality of life.

FYI: I have an appt. at MD Anderson-Orlando in a couple weeks. (I'm not happy with my present Onc.) I hope I don't also meet Dr. Gloom and Doom.

Muriel

[Connie B]

Ken, have you had a Bone Scan and a PET scan yet? These are a couple of the tools used in checking for spread of cancer. (could I ask you to please post your PROFILE so we can remember your type of cancer etc.,) It's soooooo hard to go back and forth reading your old messages because I know I don't always remember everyones profile. (thank you)!

Have you heard of the book that Richard Block wrote, From H & R BLOCK??? They gave him 6 months and told him to get is affairs in order and enjoy the last days he has here. WELL.... long story short he found a different doctor and lived for 24 years and DID NOT DIE from Lung Cancer. There are MANY STORIES JUST LIKE HIS!

I'm sorry Ken, your doctor sounds like MR. DOOM & GLOOM to me! To often doctor's seem to write off lung cancer patients, for what ever reason. This doctor in MY opinion is doing that to you. Make sure who ever you go to that you tell them your in it for the LONG HAUL AND THE FIGHT OF YOUR LIFE!

Oh, before I forget, do you have any other major health problems that may stand in the way of you doing aggressive treatments?

Many many many many Stage III and IV (late stage) lung cancer survivors live long lives. Some contiune doing treatments for years, and some don't need them. No One person is the same in this journey.

I think I would shop around if it were me!

Best wishes to you.

[Guest hearrean]

"Connie B"]Ken, have you had a Bone Scan and a PET scan yet? These are a couple of the tools used in checking for spread of cancer. (could I ask you to please post your PROFILE so we can remember your type of cancer etc.,) It's soooooo hard to go back and forth reading your old messages because I know I don't always remember everyones profile. (thank you)!

Have you heard of the book that Richard Block wrote, From H & R BLOCK??? They gave him 6 months and told him to get is affairs in order and enjoy the last days he has here. WELL.... long story short he found a different doctor and lived for 24 years and DID NOT DIE from Lung Cancer. There are MANY STORIES JUST LIKE HIS!

I'm sorry Ken, your doctor sounds like MR. DOOM & GLOOM to me! To often doctor's seem to write off lung cancer patients, for what ever reason. This doctor in MY opinion is doing that to you. Make sure who ever you go to that you tell them your in it for the LONG HAUL AND THE FIGHT OF YOUR LIFE!

Oh, before I forget, do you have any other major health problems that may stand in the way of you doing aggressive treatments?

Many many many many Stage III and IV (late stage) lung cancer survivors live long lives. Some contiune doing treatments for years, and some don't need them. No One person is the same in this journey.

I think I would shop around if it were me!

Best wishes to you.

I'm confused. I did post a profile some time ago & it is showing up at the end of each of my posts. Please tell me if you are not seeing it. On my end, I see it fine.

Ken

[Alisa]

It shows up. I see it on all your posts.

[Guest hearrean]

"Connie B"]Ken, have you had a Bone Scan and a PET scan yet? These are a couple of the tools used in checking for spread of cancer. (could I ask you to please post your PROFILE so we can remember your type of cancer etc.,) It's soooooo hard to go back and forth reading your old messages because I know I don't always remember everyones profile. (thank you)!

Have you heard of the book that Richard Block wrote, From H & R BLOCK??? They gave him 6 months and told him to get is affairs in order and enjoy the last days he has here. WELL.... long story short he found a different doctor and lived for 24 years and DID NOT DIE from Lung Cancer. There are MANY STORIES JUST LIKE HIS!

I'm sorry Ken, your doctor sounds like MR. DOOM & GLOOM to me! To often doctor's seem to write off lung cancer patients, for what ever reason. This doctor in MY opinion is doing that to you. Make sure who ever you go to that you tell them your in it for the LONG HAUL AND THE FIGHT OF YOUR LIFE!

Oh, before I forget, do you have any other major health problems that may stand in the way of you doing aggressive treatments?

Many many many many Stage III and IV (late stage) lung cancer survivors live long lives. Some contiune doing treatments for years, and some don't need them. No One person is the same in this journey.

I think I would shop around if it were me!

Best wishes to you.

To answer your question, yes, I have had a PET & MRI/Brain scan as well as needle biopsy & EBUS. Those should all be reflected in my profile which hopefully is showing up. I'm not sure why you're not seeing it.

As to my general health, I am in pretty descent shape. That's what's so wierd about all this; I've had no symptoms at all & feel great! The 1st Doc I saw at MD Anderson which was a Thoracic Surgeon told me to get good nutrition & exercise at least 1 hour every day, which I have been doing at a local gym. He was wanting me to get my lung function up in prep for surgery after the chemo treatments. But the Oncologist they then sent me to seemed less than optimistic as I said here before.

The Oncologist is going to let me have my treatments here in my home-town, so I've already located an Oncologist here and getting all the paper-work done. The treatments will be done at the direction of my MD Anderson Oncologist, but snce I assume they will work as a team, I plan on talking in depth to this local Doc & let him know exactly how I feel. I'm sure he can convey that to the referring MD Anderson Oncologist & hopefully things will actually come out better than he made them sound yesterday.

Ken

[Connie B]

Yep I see it now Ken! Wonder why it didn't show up on my screen on your last message? It's here now!!

Well... you've been through tests after tests after tests. So they have that covered! I was a stage IIIB when my journey started. I had 3 lymph nodes that were cancerous, however they didn't know that until they got in there to remove my left lung. I went into surgery a Stage IIIA and came out a IIIB.

My friend Carol who has Large Cell never had surgery either. She was a stage IV. She did chemo and I can't remember right now if she had radiation or not. I think she did, but I can ask her. I'm going to hope you follow in her footsteps. Her tumor shrunk to a very small size and has not grown in the last 8 years. It had also spread to her eye, but that too went away. She hasn't done treatments in about 7 years now and is doing very well.

Keep us posted on how things go. Your in my thoughts and prayers.

[recce101]

"hearrean" ...The Oncologist is going to let me have my treatments here in my home-town, so I've already located an Oncologist here and getting all the paper-work done. The treatments will be done at the direction of my MD Anderson Oncologist, but snce I assume they will work as a team, I plan on talking in depth to this local Doc & let him know exactly how I feel. I'm sure he can convey that to the referring MD Anderson Oncologist & hopefully things will actually come out better than he made them sound yesterday.

That sounds like a good plan. Maybe you could switch to another onc at MD Anderson, one who is more aggressive and positive. Your local onc could probably help you with that -- there's a good chance he knows many of the docs at Anderson and their general approaches to oncology. If the local doc seems open and responsive to your preferences, perhaps he could be given more authority to make treatment decisions in coordination with someone at Anderson, if that's where you would still want to have surgery. I haven't been through the doctor-changing exercise myself, but I imagine there are all sorts of hybrid arrangements that can be made.

You seem to be handling this very intelligently, so I probably don't need to tell you this, but it never hurts to...Keep in mind that these guys work for you, not the other way around.

Aloha,

Ned

[blaze100]

I second Ned's advice above. You want to fight, it is your option to be as aggressive as you like. Either this doc gets on board, or start looking for a new one.

And by the way, they try to tell people how much time they have left. If you don't want to hear, then tell him that. If he insists, just cover your ears. He'll get the message.

Barb

[Welthy]

Ken,

Hold your horses everyone! I think there are times that weekly infusions actually end up giving a higher end dose than once every three weeks. This may not be a low dose in the way you are thinking. Irinotecan packs a powerful punch to the digestive system, so moderating the dosages may work to your advantage in that area. Sometimes oncologist's will adjust the dose lower for once every three weeks or weekly dosages if the patient can't tolerate the big wallop. This doesn't sound like the case for you, but check to see what your oncologist thinks your performance stats are. Have you run this by Doctor West at Onctalk.com? You need to talk to your oncologist and clarify what the actual dose will be each week. (Take that and multiply by 3 to see if it equals a once every three week dose.) I was notorious for checking the actual bags to insure that my husband was indeed getting full doses even though I knew the oncologist was treating him with everything he had in his arsenal. If you don't feel this adjustment is what you want, go ahead with some treatment while checking for other opinions.

What is your stage? IIIa, IIIb, or IV? I'm thinking that with talk of you being a candidate for surgery, that you are not in as bad shape as you might think. They rarely talk surgery for anyone at Stage IV, regardless of future shrinkage. Same goes for the talk of future radiation (except for palliative measures). Sounds pretty aggressive to me.

I can see how disturbing this is for you, especially with apparently misread scans. It comes down to asking the right questions and getting the assurance you need to feel comfortable with this regimen.

Best of luck and keep us posted,

Welthy

[Guest hearrean]

"Welthy"]Ken,

Hold your horses everyone! I think there are times that weekly infusions actually end up giving a higher end dose than once every three weeks. This may not be a low dose in the way you are thinking. Irinotecan packs a powerful punch to the digestive system, so moderating the dosages may work to your advantage in that area. Sometimes oncologist's will adjust the dose lower for once every three weeks or weekly dosages if the patient can't tolerate the big wallop. This doesn't sound like the case for you, but check to see what your oncologist thinks your performance stats are. Have you run this by Doctor West at Onctalk.com? You need to talk to your oncologist and clarify what the actual dose will be each week. (Take that and multiply by 3 to see if it equals a once every three week dose.) I was notorious for checking the actual bags to insure that my husband was indeed getting full doses even though I knew the oncologist was treating him with everything he had in his arsenal. If you don't feel this adjustment is what you want, go ahead with some treatment while checking for other opinions.

What is your stage? IIIa, IIIb, or IV? I'm thinking that with talk of you being a candidate for surgery, that you are not in as bad shape as you might think. They rarely talk surgery for anyone at Stage IV, regardless of future shrinkage. Same goes for the talk of future radiation (except for palliative measures). Sounds pretty aggressive to me.

I can see how disturbing this is for you, especially with apparently misread scans. It comes down to asking the right questions and getting the assurance you need to feel comfortable with this regimen.

Best of luck and keep us posted,

Welthy

Thanks for the advice. I will try & check with him although he will be consulting with the local Onc since they're going to let me have my treatments here in my home-town. I can talk to the new Onc & make sure at least he knows my wishes. FYI: I was staged at IIIa. When they did the EBUS procedure & biopsied the lymph nodes, they agreed with the PET that the only (2) nodes affected were on the same (right) side as the primary mass. I believe however what the Onc was actually trying to tell me was that there did appear a very small (less than 1 cm) nodule a little further over to the right of the primary that he said could quite possibly be a met. (Keep in mind that my type of tumor is a Neuroendocrine type which typically is aggressive). His philosophy is that if that is a met, then the chances of spreading by my circulation system either already occuring (or soon spreading) to other parts of my body would be high. He told me that particular nodule's reaction to chemo would give him that answer. (I interpreted that as saying that if Chemo shrunk it as well as the primary & nodes, then it would be a met & that would not be good; sounds wierd to me). And if it is a met, then surgery would be fruitless because if they went in to get that one, there would likely be others in other places, etc. I don't know...just my interpretation of what he was telling me.

I agree with you...I don't know why the initial MD Anderson Doc (Thoracic Surgeon) was so optimistic & indicated surgey after chemo, but then the Onc from the same office says something different. After all, they should have both been looking at the same tests results all done there at MD Anderson. It's either different interpretations or different personalities (one being an optimist & one being a pessimist).

Ken

[Welthy]

Ken,

This is simple. If you are a IIIA, then they treat you with curative intent. If you are a IIIB-IV, the treatment will be life-extending, except for a very small percentage who do beat the odds. The actual chemotherapy treatment itself is no different for either staging, but IIIA's (and rare IIIB's) may be able to have surgery down the line following shrinkage. (See my profile to note how aggressively my Stage IV husband was treated.)

Tumor burden, cell type, and cell differentiation (which is a huge tie-in to how aggressive the cancer is) are all components of prognosis. Doc West has written some great articles recently on doubling rates.

Our oncologist didn't play any games with us, his first words were that my husband was incurable, but treatable. We were forever grateful that we operated on that premise. I wish more oncologists had such clarity.

Good luck, God speed, and I hope your treatment begins soon!

Welthy

[john]

Yes as a stage IIIa it still may be possible to have surgery after the chemo.

The CPT-11 (Irinotecan) / Cisplatin combo has worked well for Large cell neuroendocrine carcinoma in one retrospective study in japan but the sample was small.

It is hard to differentiate the different neuroendocrine cancers sometimes. Yours *might* be an atypical carcinoid which is not as aggressive.