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tatlyn

Just Beginning this Journey

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My 69 year old Dad is newly diagnosed with nsclc. My husband and I are his only close family support as my Mom died a year ago this past September. My Dad was called into his surgeons office a few days before Christmas, while my husband and I were out of the country, and given the news that not only was his lung cancer inoperable but that it has spread to his bones, he has only months to live, and that any treatment given would be for *comfort* only!! We were suppose to be at that meeting with my Dad but it wasn't suppose to happen when it did. My Dad asked few questions. I currently don't have any information as to the size, or the sub type of the cancer. Apparently there are also spots of cancer on the other lung as well. I understand that the primary tumor is in the left lung, close to the edge and, *dangerously* close, as the surgeon said, to a rib. We have an appointment with a medical oncologist next Thursday and then with a radiation oncologist the following Monday. Both these appointments were set up by the surgeon. My husband and I will be with my dad at these appointments. My Dad's attitude through all this so far, I think, has been amazing. He's carrying on, discussing plans for the future, as we are with him, and we talk about treatments and how despite a doctor giving you a *death sentence* people are surviving this, do survive this and are still here on this earth long after a doctor told them would be the case. But this is my deep, down fear...what happens if the medical oncologist says that there is no hope, that he doesn't plan any treatment because none is called for? Would he say that? What would I do then?...I am the cheerleader and I'm dreading facing a situation where I'm at a loss on how to proceed. I am being strong for my Dad, as I suspect he is being for me, but really this is just eating me up inside and I'm so scared. I am also humbled however by the stories I have read here and I'm inspired by the courage, love and support shown by you all to each other. I am so glad I found this board!! Do any of you anticipate that a doctor would simply say, "no treatment." Does that happen? We live in Ontario, Canada and the initial appointments are at the Durham Regional Cancer Centre.

Lynda

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Lynda,

Welcome to the group. Take a deep breathe. The first thing that I want to tell you is that the doctors are not in control. They can not decide when someone will live or die. The numbers that they quote you are not always true. For some, they live longer and for others, they do not live as long as the doctors say. Either way, it is not up to the doctor. It is up to God and your dad and you and your husband. It is important that all of you keep positive and be prepared to fight this with all that you have.

The next thing that I want to say is that if the doctor does say there is nothing to be done, go to another doctor. That doctor is not the only one. Your dad has a right to a second opinion or a third opinion or however many opinions he needs.

My husband was diagnosed NSCLC stage 1 in Jan. 2005. In Feb. they tried to remove the lobe, but the cancer had spread, so he was rediagnosed at stage 4. The surgeon and oncologist that we saw first gave no hope and said if he lived a year we would be lucky and that we were probably looking at 6 months. Guess what, we went and got another opinion. His oncologist joined our team to fight and with God, Mike, Me and the oncologist, we fought with all we had. On Nov. 11, after 8 rounds of chemo, we saw another surgeon who removed a wedge from his lung. Mike is cancer free now. He has his next scan at the end of this month. This is a long way from six months to a year. You can read all the details in my story.

See, the doctors can't decide this. Don't worry too much about this doctor saying there is nothing to do. Decide now that if he says that, you will take him to another doctor. You can't rely on what they say about when this horrible disease will take him. They really don't know for sure.

This group is awesome. We will all help you when you need it. We will listen, laugh and cry with you. Please keep us updated on how things are going.

Don't give up!

Kim

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Welcome, Lynda from the Great White North :wink: ~

I'm sorry you've had to find yourself here, but here you are. A good place to be for hope, info, and support.

The R.A. Bloch Foundation has two wonderful books about fighting cancer - free of charge - and available by calling: (800) 433-0464. The website is: www.blochcancer.org

Richard Bloch, himself, survived a terminal lung cancer dx for MANY years before his death from a completely unrelated cause. You will also find many survivors here. They'll be along anytime.

HOPE is the key...you, and your Dad have that. Now you need information, and LOTS of it. Use it as one of your most powerful weapons - brandish it frequently :wink: ! Keep up on current treatment options, and if you aren't comfortable with the answers your doctors are giving, keep asking, or find a new doc, if necessary.

And know that you have just joined a VERY powerful circle of prayer, and positive energy - one that, hopefully, will help to sustain you through this difficult journey.

Best wishes for healing ~

Stacey

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We have many members here with the same diagnosis as your dad. I believe you will find that the medical onc will have a treatment plan for him which includes chemo and radiation. Hang in there and welcome to the site.

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Welcome to the site, Lynda. Forget what the surgeon said, and wait for the oncologist to tell you his plan. I agree that he will have a plan, or if he does not, then go for a second opinion. There are many treatments for nsclc these days, so you have only just begun. Tell your dad that my wife, just a year younger than he, was diagnosed with Stage IV, nsclc, with metastatsis to five bone locations and given 9 months. That was in October of 2002. She is still here after three years! One reason is she has an oncologist who is aggressive and on top of things. She also has a radiation oncologist. She has had three chemo regimens and a lot of radiation over the three years and all have been effective. She lives a pretty reasonable life, and we are all glad she is still around. We are still fighting and will continue to do so. She even helps others who have to go through this as well. So, don't despair -- there is plenty of promise and hope Don

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WElcome Lynda. It sounds like your Dad has a wonderful attitude and as others have said, docs are often wrong. My Dad was 77 when he was diagnosed 5 plus years ago. I think if we were given a "time frame", we would all have been very discouraged. Oncologist never gave us a "prediction". My Dad has had a few downs but on the whole, he has survived with a good quality of life.

By the way, my dad lives in N.Y. and I live in B.C. ---been a warm winter here -- 10 degrees on many days; (for those in the US, this is Centigrade which is about 50 degrees F ---just a trace of snow at the end of November. Where in Ontario are you? Keep in touch with us.

gail p-m

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Lynda,

sorry you need us, but glad you found us.

As many have already said, please try not to

listen to "time frames". one thing my husbands drs

never did was put a time on Alan's life, even when

his cancer went to his brain.

As you will read in our profile Alan had some

bumps in the road, but he is still with us and

enjoying a good quality of life.

The 1st few weeks after diagnosis are the toughest.

so much to digest. write down a list of questions you

want to ask the Dr.. In the beginning I took a

notebook to all Alan's appointments. If I did not

understand the answer I would ask the dr. to please

explain in terms I could understand. A good dr. will

not mind the questions and will take the time to

answer them to your satisfaction.

Sorry I got a little long winded. Please keep us

posted to your Dad's progress. we will pray for you

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Welcome Lynda,

Sorry you have the need to be here but there is a lot of experience on this site. My Mom was given 4 months to live and she went on to have over a year with us. Ask lots of questions and learn all you can before the appointments...Janet

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Welcome Lynda: there are many treatment options for advanced lung cancer. I suspect the surgeon just deals with early stage cancer and does not really keep tabs on the advances in late stage treatment. It is a good idea to go to a major cancer center. It sounds like your dad is going to a major cancer center. Let us know what the treatment plan is. As soon as your dad has a treatment plan, you can zero in and focus on that. You and your dad have my prayers.

Don M

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Welcome Linda. Have you and your Dad been to an Onocologist. Perhaps the surgeon is jumping the gun. Please keep us posted. Donna G

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Thank you everyone. I am overwhelmed by your welcomes, support and encouragment. I believe that a positive attitude and willing to fight as long as one can is half the battle already won. From reading your responses I can see that there is plenty of positive attitude on this board to go around and around again and again, as needed.

Gail, we are in the southern Ontario area, about an hour and a bit north of Toronto. 50 degrees and just a trace of snow would suit me just fine...very balmy whether indeed :wink:

Don Wood, I have read your wife's profile many times as it does seem very similar to what we are currently facing with my Dad. God Bless you both, you are true inspirations and your story gives me hope.

Kim (bauner95) yours was the first response to my post and I cried when I read it because you said exactly what I needed to hear. I was dreading this first oncologist appointment...not knowing what to expect. Thank you for putting me back into the fighting mode!!

God Bless everyone who is fighting this disease.

I know I am going to have a lot of questions and I'm wondering what is the most appropriate forum to post them in?

Lynda

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We moved to the US from Oakville so welcome to a fellow Canadian.

Is your Dad going to Princess Margaret or a local hospital? Is there any problem now with 2nd opinions?

Just keep taking a deep breath, and don't take no for an answer if the drs aren't forthcoming.

By the way, ignore the statistics, most of us should be long gone if they were right.

Good luck to Dad in his journey.

Geri

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Welcome Lynda,

We are glad you found us. My best advice to you is to take it one day at a time. It's not always easy , but once you have all the facts and a plan of treatment it gives you a breath of hope and a new focus. Keep in touch and know that we are here for you.

Sue

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Welcome Lynda! Boy, reading your post was a bit like reliving my first post here. In fact I could have written it(LOL). Seems our Dad's are on the very same paths - and could have been diagnosed by the same "funeral director" lung specialist/surgeon. NEVER accept that there is no treatment, unless of course that is truly what your Dad wants. We are struggling with the same "death sentence" type of diagnosis and an oncologist who is unwilling to attempt chemo at this point. I am trying to make Dad realize that until he is ready to give up...there is ALWAYS hope and treatments that may help. I am trying to encourage him to severe the relationship with the "funeral director" and find a oncologist who will say " I don't know if we can win but let's give it a hell of a try!" and I know in my heart that those types of oncologist are out there.

I feel your pain! Stay strong, get as much information as you can and get ready to be a "bull dog" for your Dad if you need to. I pray that your "journey" proceeds smoothly and that you find answers during his next appointments!

Cindy

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Welcome, Lynda.

I'm so glad you found us and have heard other sides to the story from people who have lived them.

I was diagnosed Stage IV a year ago, with bones mets. I'm still here and plan to be for a long time! So many new treatments and options are available every day, there's bound to be something that helps your dad.

We're all here fot you, every step of the way!

Leslie

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