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Raindog

New and in need of Advice.

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Greetings to all of you,

I have been lurking on this board for a few weeks now and I cannot begin to tell you how wonderful you all are. Your stories and advice have helped me get through the beginnings of this new life changing event called cancer.

My father had a CT scan a few weeks ago, it showed a Mass in his right and left lung with suspicion on his liver. The masses are 2 cm and 3.1 cm respectively.

Dad went for a bronchoscope last week. The resperologist told us he got one "big" sample from one of the leisons, but he was unable to get the scope to the other mass for biopsy.

The resperologist that did the scope met with my family (I was not present) upon receiving the initial pathology, He told us the tissue sample had come back as "not cancer".

He would not give any hope or encouragement about this (what we thought was good news) and proceeded to give my family time frames and numbers including the stage of the cancer,etc - without any conformation. It was if he wanted it to be cancer and would not encourage anything to the contrary!

The following Tuesday July 4th the wash and brush results came back from pathology and confirmed that it indeed was Non Small cell Squamous cancer of the large cell variety. This was devastating! not only was it devastating - the results were read to my Mother over the phone by the Doctors receptionist as he was in surgery!!!

Dad went to see the Oncologist yesterday, he was mostly examined and advised by the Oncologists Intern. Once the Oncologist arrived he said they suspected mets on his liver and, as there was a mass (not biopsiesd) on the other lung, that the cancer had spread and that chemotherapy was his recommendation.

My concern and lack of knowledge is this:

Should they not be doing more to confirm diagnosis, such as pet scans, bone scans, etc?

The only staging we received was stage 4 from the resperologist during the "it came back as NO cancer" consultation. In other words - before it was confirmed as cancer!

I am worried sick, as is my entire family over how this has all been handled. I am led to think that the Onc is treating this as palliative care without telling my family as much.

Being that we have never been down this road we have had to decide to proceed with the Oncologist recommendation.

My Dad is 71 and is a life long smoker with Diabetes. He likes his Oncologist and feels he has had enough stress over the past few weeks and wants to proceed with the chemotherapy plan.

Dad is strong and aside from the stated - is in pretty good health. His attitude is to beat this and he is determined. We all support him and do NOT want to do anything to discourage him from his mental set.

We are all terribly upset and obviously extremely anxious over this entire situation. I am so grateful to all of you for your courage and inspiring advice.

Any help or feedback would be MUCH appreciated.

Thank you all so much, you are all in my thoughts and prayers.

Best regards,

-Rod

(Canada)

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A very warm welcome to you, Rod. You are now finding yourself at the beginning of a scary journey with many twists and turns. All of us here have been in exactly the same spot as you. Before you receive any sort of definitive advice, I bet almost all of us would say you first need another opinion. Seems like you are being sort of shuffled of with little info to go on. Lots of us have had 2 or 3 or even more opinions. So that would be my very first step. Once you get a certain dx then you need to research and learn all you can. Come here for we have so many knowldedgabe folks to help you along the way. For now, step back, take a deep breath, circle your wagons, and get that other opinion. Then you can start to wage battle. We are here for you.

Kasey

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Hello Rod and welcome.

I am glad you posted and have begun to seek some advice. This board is the best as far as support and answering questions and offering advice.

I am not as experienced in this nightmare as some of the others that I know will be along and reply to you, but my first bit of advice is to get another opinion! Your dads oncologist does not sound as if he is really willing to take an aggressive approach. I would definitely have someone else have a look at the results etc and get some additional input.

Please keep us posted and let us know what we can do to help you..

Sending prayers and positive thoughts,

Chris

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Welcome Rod, i think a PET/CT would be useful to examine the possible cancer in liver and to establish a baseline to measure tumor growth or decline after chemo. I wonder why onc has not ordered one. Same with bone scan.

Has your dad had a brain scan? It sounds like the onc is not being as pro-active as they should.

I got my bronchoscopy results myself from the pulminologist over the phone. There is no good way.

Best wishes to your family Rod, Barb.

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Rod,

I think you should go for a second opinion. Prior to treatment, it would seem to me that it should be decided if it's liver cancer spread to the lungs or lung cancer spread to the liver - treatment is probably differing for each scenario.

Get the second opinion before any treatment, you don't want to screw yourself out of possibilities before you're even out of the gate.

Good luck,

Becky

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Hi, Rod, and welcome here. Glad you posted. My wife and I spent a week in your beautiful province some years ago -- loved it. You have good instincts on this cancer -- I agree that the doctor seems to be moving in a palliative care direction. It would be good to find out what your dad really wants to do, and support him. A second opinion is always a good idea, as others have pointed out. Then you have better knowledge of what course to take. Only a biopsy can definitely determine cancer, but once it is found in one place, it is pretty good that other tumors are cancerous as well. Best to you and your dad. Keep us posted and let us know how we may support you. Don

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Welcome and glad you found us under the circumstances. Do not listen to a dr when he teels you how long you have to live. He doesn't know and I personally do not think it inspires a person to Battle the Beast called cancer.

Second a litttle background on how staging is determinedAmerican Cancer Society; Click on the link and you should be redirected to ACS;

1) http://www.cancer.org/docroot/ETO/conte ... taging.asp

This is also a great start for starting on this fight;

http://www.cancer.org/docroot/home/index.asp

Get a second opinion if at all possible It is your fathers Life at stake here. You need a dr that will start a fight no matter what stage or condition, not one who tells you things over the phone and how long your dad is going to live. Knowledge is power and keep us posted on what is going on. Think Clinical trials for options also ask questions ofOnc for anything and ask us questions when ever you want. We are always here and leave a light on for ya!!

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Rod,

You will find the folks on this board wonderful and very knowledgeable. I am fairly new to this as well, diagnosis began late may/early June...I received everything over the phone numerous times. I agree with the others, your dad should go for a second opinion. If you can get to a comprehensive cancer center, they usually have a thoracic oncology team utilizing the latest in treatment options.

Lilly

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Hi,

Thank you so much for all of your excellent advice and kind thoughts.

I am going to try and push Dad for the second opinion at our cancer clinic here in British Columbia.

I brought it up today, but I don't think Dad is ready for more tests and stress, etc.

I think I will wait for the end of the weekend to have a serious talk about this, that way he has a couple of days to relax and absorb what is taking place.lord knows we could all use a few days off.

Again - I cannot tell you how much I appreciate all of your help, thoughts and prayers. It has got me through many dark anxious nights and days.

My thoughts and best wishes to you all,

-Rod

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hi Rod,

I agree with the others and your thoughts as well on the baseline of PET, bone, and brain MRI scans. It is state of the art diagnostics for solid treatment planning.

Best to you and your family.

Cindi o'h

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Wishing your dad and your family a solid gameplan soon and successful treatments. I agree that a second opinion is always a good idea, even if it is simply for peace of mind.

There are different treatment options available that you should be made aware of and that should be made available for your dad.

Knowledge is power in beating this cancer. Do the research and keep doing what you're doing and remember, there ARE survivors- you can find them right here!!

Keep us posted, ok?

Prayers,

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Welcome Rod...youve found a great place for info and support.

Just a thought...youre entitled to copies of all medical test reports, films, anything they test. When going for 2nd opinion, these could help avoid duplicate testing, if they'll accept them. Some docs prefer to do their own tests, some dont...worth a try..? Good luck..Rich B.

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hi Rod; I see you have already gotten some good adice and welcomes form othere memebers. I just want to add my welcome to the list.

Don m

p.s. I live in the coastal region of the Olympic Pennisula which is a lot like the West side of Vancouver Island.

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Rod,

Welcome to the boards. Sorry about your father. This disease really stinks, but you can be sure that there are many, many fighters and survivors on these boards.

It must be really difficult to not have the control over what to do next. It is your father's decision, but gentle nudging in the right direction never hurts! When my husband was diagnosed, I really stood my ground about aggressive treatment. Fortunately, we have a great onc. who is willing to treat aggressively due to my hubby's otherwise good health. I've told him he needs to think outside the box. I figure if my husband is willing to fight like hell, then give him all the tools to do it with. So far we've all been on the same page.

Sounds like a PET and head CT are in order, but I'm not a Doctor. (I only play one at home!) Chemo is a good thing as long as they are willing to give full doses and not cut back due to age. Studies have shown that older people benefit just as much from full strength chemo as young people. Don't get too worried about the "palliative" treatment term. I think they just have to use that "word" when it comes to late stage cancers. Our Doc said there was no cure, but we will manage this like a chronic disease.

Keep us posted on his progress and a second opinion might be a good idea.

Warm regards,

Welthy

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Hi and welcome to our family. AS you can see you really got some good advice here. We are also very supportive.

Let us know what you dad says about a 2nd opinion. He probably should have a CT and Pet scan to see where the C is.

Keep us posted. Hang in there.

Maryanne

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My continued thanks and prayers to you all.

Thank you for all the wonderful advice and encouragement. I don't think myself or my family would be holding up as well without this wonderful community.

Warmest regards to you all.

-Rod

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Welcome Rod,

My dad also had NSCLC and was 72 at diagnosis. He never really got a second opinion and that bothers me to this day. I think his onc was pretty good, but no bedside manner and not as procative as I would have liked. That said, I hope your dad does well with treatment and just remember to stay positive with your dad. My dad was so hopeful and I really thought he would be one of the ones to beat this. As you can see from this group there are many who have survived for many years with this disease.

Take care,

Cathy

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Hi Rod and welcome.

I would also suggest getting a second opinion, if only because the oncologist rather "jumped the gun" before even having a definite diagnosis. Having said that, if your father likes and is comfortable with this doctor, then he might prefer to stick with him. Feeling comfortable with one's oncologist is very important to the patient. I felt this way about my first oncologist--she used to greet me everytime I saw her with "Hey Kiddo! How ya feeling?" SHe made me feel so at ease.

Best wishes to you, your dad and family.

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Rod -

I am sorry you had to find us. I can't provide any more input than everyone already has....You are at the beginning of a what is a rough journey...yet you will feel more in control once you have a definitive diagnosis and a game plan even if it is no treatment. Love your dad every day and be thankful for every minute.

Thinking of you and your family.

Holly

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Hi Rod

Just had you and your dad on my mind and wanted to check in and see how things are going. Any luck getting him to consider another opinion?

Sending prayers and positive thoughts to you and your family,

Chris

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Hi Chris,

Thanks so much for your thoughts and follow up.

Dad to agreed to a second opinion at our Cancer clinic here in British Columbia.

Here is the kicker:

We can't get him in for 3 weeks and he is scheduled to start chemo this friday. I am very concerned about complicating any future treatment once Dad has had a complete work up for staging and potential mets, etc.

I read my Dads report, and it is alot of asumption on the part of the Doctors. The only certain result is "a fragment of squamous carcinoma in situ" from the bronchoscopy wash of the right side of his chest.

We have decided to keep the appointment at the cancer clinic for the second opinion, etc, and proceed with the chemo treatment this friday.

We just feel the sooner we get at this thing the better.

Dad is in relatively good health, aside from the LC, and his spirits and attitude are excellent.

He is still doing all his normal day to day activities with very few symptoms of anything other than what I would think is mostly stress.

He still is coughing up alot of phlem, mostly green in color and occasionally there will be blood. This has been going on for several weeks now. It's not a violent cough, it just happens here and there. The strange thing is -- my Dad has also been blowing his nose and having nasal drip. The Doctor totally blew this off and didn't recomend any antibiotics or even look into what might be causing this. Strange!

Thank you so much again for your thoughts and concern, I really appreciate it.

Warmest regards,

-Rod

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Greetings to all of you,

I have been lurking on this board for a few weeks now and I cannot begin to tell you how wonderful you all are. Your stories and advice have helped me get through the beginnings of this new life changing event called cancer.

My father had a CT scan a few weeks ago, it showed a Mass in his right and left lung with suspicion on his liver. The masses are 2 cm and 3.1 cm respectively.

Dad went for a bronchoscope last week. The resperologist told us he got one "big" sample from one of the leisons, but he was unable to get the scope to the other mass for biopsy.

The resperologist that did the scope met with my family (I was not present) upon receiving the initial pathology, He told us the tissue sample had come back as "not cancer".

He would not give any hope or encouragement about this (what we thought was good news) and proceeded to give my family time frames and numbers including the stage of the cancer,etc - without any conformation. It was if he wanted it to be cancer and would not encourage anything to the contrary!

The following Tuesday July 4th the wash and brush results came back from pathology and confirmed that it indeed was Non Small cell Squamous cancer of the large cell variety. This was devastating! not only was it devastating - the results were read to my Mother over the phone by the Doctors receptionist as he was in surgery!!!

Dad went to see the Oncologist yesterday, he was mostly examined and advised by the Oncologists Intern. Once the Oncologist arrived he said they suspected mets on his liver and, as there was a mass (not biopsiesd) on the other lung, that the cancer had spread and that chemotherapy was his recommendation.

My concern and lack of knowledge is this:

Should they not be doing more to confirm diagnosis, such as pet scans, bone scans, etc?

The only staging we received was stage 4 from the resperologist during the "it came back as NO cancer" consultation. In other words - before it was confirmed as cancer!

I am worried sick, as is my entire family over how this has all been handled. I am led to think that the Onc is treating this as palliative care without telling my family as much.

Being that we have never been down this road we have had to decide to proceed with the Oncologist recommendation.

My Dad is 71 and is a life long smoker with Diabetes. He likes his Oncologist and feels he has had enough stress over the past few weeks and wants to proceed with the chemotherapy plan.

Dad is strong and aside from the stated - is in pretty good health. His attitude is to beat this and he is determined. We all support him and do NOT want to do anything to discourage him from his mental set.

We are all terribly upset and obviously extremely anxious over this entire situation. I am so grateful to all of you for your courage and inspiring advice.

Any help or feedback would be MUCH appreciated.

Thank you all so much, you are all in my thoughts and prayers.

Best regards,

-Rod

(Canada)

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