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Inoperable/Incurable


tatlyn

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I apologize if this seems like a dumb question or one that should be obvious to me at this point but I've been wondering by what criteria is lung cancer deemed incurable? Is it that the cancer has spread? Does inoperable always equal metastases and thus incurable to the cancer specialists? Dad saw the radiologist oncologist on Monday and though, like the medical oncologist, he didn't give any doom and gloom predictions or try to put a time table in place, he did also use the word incurable.

I had asked the oncologist about instances where I've heard radiation and chemo are combined for treatment and he said that was only done when they are trying to cure the cancer??? When we got home my husband expressed his confusion over that statement as it sounded to him like they didn't want to cure my Dad. We know (I would assume) that's not the case but I could see where my husband was coming from.

I should also say that I tend to over think things a lot of the time and the answer probably doesn't even matter because we are going to take this one day at a time, one treatment at a time, but I also don't want us to be complacent or follow blindly down a path because we are told it's the right one. We did that unwittingly with my mom and I'll always feel that if we had been more aggressive and not been of the attitude that, *doctor* always knows best, she might be alive today instead of having died from an infection that in hindsight the cause of should have been quick to zero in on. O.k., now I'm rambling, so I'll stop :)

God Bless.

Lynda

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Dear Lynda,

I am going to answer from my own very limited experience here. I am sure more 'experts' will be along with more - probably more correct - info very shortly.

I believe cancer....more specifically LC.... is probably never said to be curable. That is what all the doctors I have had contact with have said. Originally I was treated with chemo and radiation, but only with palliative purposes in mind - not for cure. I obtained 4 opinions. It was the 4th where I was given any hope of surgery. I did receive that surgery, but still will not be considered cured in spite of the fact that the tumor was dead, the surgeon got it all, and almost 30 nodes and other samples taken were all negative for any cancer.

It was explained to me like this. There is ALWAYS the possibility that there is some rogue focus cell that remained hidden....in spite of all the presurgery chemo and radiation AND adjuvant chemo afterwards. That one cell could have been hiding and can emerge at any time. I don't know if we ever would know that would not happen.

Also I do not think that inoperable necessarily means the cancer has spread. It COULD mean that. But it could also mean that the tumor is in such a place that it is dangerous or inaccessible.

I don't know if this addresses any of your concerns or not. Just wanted to share my limited experience with hopes it may help.

Be sure you do get a second opinion. And if you still have doubts - even more. I was 'inoperable' for 3 opinions. The 4th one found a doctor who was willing to give it a shot. Of course I was at NIH - research - you know. He was at least willing to give surgery a try.

Kasey

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Lynda, if you have any doubts about the answere your oncologist are giving your dad, I would certainly encourage you to get a second opinion. Some oncologists tend to be more agressive in their treatment plans than others. You may get the same response from another doctor but at least you will feel that you have explored more possibilities. When my husband was diagnosed, we were given the same diagnosis....incureable, inoperable but treatable in order to buy some time. Because my husband had extensive small cell lung cancer, I believe this diagnosis was correct and our wonderful doctor tried everything in his power to save my husband.

I hope you get the answers you need to make you feel comfortable with your dad's treatment. Saying prayers that all goes well.

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Lynda,

I will give you my experience, please remember my husband has small cell lung cancer.

Alan's Dr.s told us that his cancer was incurable. That the goal of treatment was to control his cancer for as long as possible and insure quality of life.

You will read in our profile the difficulties Alan had with treatment, his cancer did spread to his brian, but inspite of all that we have past 1 year since diagnosis and Alan's QUALITY of life is good. We have adjusted to our way of life and have concentrated on making lasting memories. We know the beast will not sleep forever and that Alan's condition can change anytime, dwelling on that will not change our situation. So we live today and worry about tomorrow when it gets here.

As stated by others, if you want 2nd, 3rd and even 4th opionions then get them. I had Alan's case brought before the tumor board so I could be completely satisfied with all that was being done for him.

Prayers for you and your family.

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I think in general if there are distant metastasis, the cancer is considered incurable and usually inoperable.

The key work is "in general". There are some instances for a single brain met, or adrenal met where surgery will be performed.

Radiation and Surgery are "local" treatments. They do not treat the whole body.

Chemo or some other drug is needed for "systemic" treatment.

It is good to look for all options. As in Kasey's case she kept looking until she found someone to operate. Pancoast tumors are fairly rare I think and often invade the chest wall which some Drs see as inoperable. She looked around and found someone who could do the operation

As Kasey said it may be the location of the tumor.

One thing to make sure is that the bone mets are actually mets and not a false positive. If there is no met then maybe surgery is possible.

Squamous cell is a type of lung cancer that (I believe I read) has a little better prognosis than adenocarinoma and SCLC.

It tends to be centrally located and can become quite large. Complications may be that it causes problems with breathing.

http://www.atcs.jp/pdf/2005_11_6/401.pdf

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What great advice everyone has here. I, like your dad are stage IV with mets to bone. My doctors thoughts are that they can't get it all, so they will continue to try to keep me stable, making sure there is no further spread and of course allow me to have a good quality of life. As I continue along, with new advances coming all the time, hopefully, if something stops working, there will be something new to try. So far, so good.

You've just gotta keep on smiling. :wink:

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So far everyone has told you exactly what I would tell you. It is so important to have a team of doctors that are willing to work with you and not tell you what needs to be done. If you have questions and his doctor will not answer them for you, then go see another one. The way we looked at this when we were in the same position was that we were not just dealing with a sore throat. We were dealing with life and death. If the doctor that your dad is seeing is not willing to fight this as aggressively as your dad can possibly stand, then he may not be the one. We saw two before we had the right one. He was willing to do whatever we wanted and we shared a common goal, to get rid of this no matter what it took. He wanted to try chemo, but he also wanted surgery. He called surgeons all over before he found the one that could be a part of our team. This was not easy, because most surgeons don't want to operate on stage IV after chemo, but he did not give up on this. His nurse told me at the last appointment that the night before when they were reviewing the cases of the next day, when they came to Mike's he asked her what she thought I would want to do. I have never had that! We are a great team and together, we will get through this.

Mike was inoperable, incurable too, but after chemo and surgery, he is cancer free. We were told pallative care too, by the first oncologist. I understand he may never be considered cured, but hey, we will take cancer free or NED for as long as we can get it.

Please ask questions and if they won't answer them, then go some place else. This is not the only doctor. This is your dad's life, so keep going until you are 100% satisfied with the care he is getting.

Sorry to ramble here. I hope I made my point.

Kim

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Hi Lynda: I have had 2 occurences of stage 1 cancer in the last 2 years. I had an operation each time to get rid of it. As I understand it, if I can go 5 years since my last operation and remain cancer free, I am considered cured.

There are no guarantees however.

Don M

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Dear Lynda, here's the way I understand it all:

Depending on the stage, Lung cancer is either "curable" or "treatable". Stage IV is not considered not curable because the cancer has spread beyond the original site into bones, or brain, or lymph nodes etc... Many doctors will only offer "pallative" care to stage IV patients. That is all they would prescribe for my husband and that is precisely why we chose a new oncology team back in January. We found doctors who would be very aggressive in his treatment. I told them that I didn't expect miracle cures and that I simply wanted the best treatment that was out there. I did the research and found the procedures that I thought we should try. When I couldn't get a referral from the oncologist (even though I like him) I went to the primary and got one. I'm telling you all this because I don't want to see anyone treated like a statistic and that is what I see happening all over the place. If you feel that your loved one is not getting a fair shake then move on or at least get a second opinion. Feel free to print out my husband's profile and take it to the doctor. There are plenty of Stage 4 survivors right here and I'm sure they all feel the same. Tell them "The fat lady ain't sung yet!"

Trish

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Lynda, my Dad was also diagnosed with stage iv NSCLC with mets to the neck and spine. That was almost two years ago!! :D He's having some difficulty right now but hope to get past that soon.

My Dad has been treated by both radiation and chemo several times since the first diagnosis in march 04. He has had some really good feeling times throughout that time with some weak and pain filled times too. One of his first Docs (Dad and Jane called her "Dr. Death") didn't think he would survive the first summer, but he did great. They later came to really like that Doc (Dad appreciates the no BS type of people) and were saddened when she relocated this year from SW florida.

My grandfather had lung cancer and survived for decades after - he of course was diagnosed at a much earlier stage but he was "cured".

Hope this helps - I am new at posting here but have been reading and following leads and info for quite some time -- it has been really helpful!!

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Lynda.

The cancer has spread beyond the chest wall. I had mine still contained in the chest are ie lung and medastinal lymph nodes. They radiated the snot outta them and chemo. Maybe cured? 3 years out with no recurrence. I have had significant loss of function directly due to the radiation/chemo. My daily living skills are poor. All is not rosey for all if they qualify for curative treatment. They cured the hell outta me! But, I have a hard time moving due to shortness of breath and weakness.

I suspect with the right treatments, they are out there, your dad can be perking along for many years. WE have many stage IV members here who are doing it.

Cindi o'h

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Hi Lynda,

In my Moms case her cancer was inoperable because of the location of the tumor. Nobody ever gave us specifics which was very frustrating. Also, at one point we were told she was in remission. The tumor was not visible and the onc said it was remission and if that lasted 5 years it was called a cure but that was rare. Like you have been hearing...everyone is different even with the same diagnosis and stage...Janet

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Lynda, My Wifes tumour is actually inside of her Lung That is why it is inoperable. Due to location. We caught this at stage IIB, and now are IIIB. I have been told that there is no "Cure" for this disease by her Oncologist. It can be treated and beat back. Oncology Experts Are hoping for a cure but a lot of research is leading towards "Living with this disease like Diabetes" until a Cure is found. She did not have Chemo and radiation at the same time. We did a round of Chemo and then 8 weeks every day of Maximum Curative Radiation 7000 rads a shot. We have been fighting for 3 years on March 29 2006. This is a greeat support group to be with. Lots of Info and compassion from all these wonderful folks. Good Luck and hope all this helps. Will say a prayer

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Lynda, all of this is so scary and overwhelming at first, isn't it!? the docs told us (BOTH times :roll: ) that my mother's cancer was 'curable' because they could remove it surgically, leaving no other cancer in her body. that was true for the 1st run of LC for 3 years. too soon to tell for this 2nd run, but there's no reason to believe they didn't get it all. this is all confusing to me b/c she had what I see as a 'recurrance', but her doctors feel this was a new primary LC, albeit the same kind as before. I love my mom's docs, but I suspect that is Sloan Kettering trying to beef up its cure #'s.

either way, the surgical removal of all cancer seems to be the cure/incurable line.

good luck to you. let us know how we can help.

xoxo

amie

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