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daughter1974

Don't know where to turn

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Hi.

I found this site while looking for support groups. I've spent the weekend doing research and now am ready for some support. I should back up ...

My 62-year-old father was diagnosed with non-small cell cancer in his lower left lung lobe. The nodules were found in an x-ray a week or so ago, he had a biopsy last week, and it came back positive on Friday. His PET scan was today (Wednesday), and we are supposed to get results tomorrow.

He shows no symptoms - was in for a chest x-ray for a possible injury, and that's how this was discovered. This is all too much to take in, and my parents have requested that I don't tell anyone yet. While the news is so hard and so scary, it's harder on me not to get to talk to ANYONE. I'm avoiding friends because I can barely hold it together and they will wonder what's wrong and I feel phony saying that all is great. That is why I was looking for support groups. I'm intermittently a bit of a mess. Once a treatment plan is in place, they say they will tell people. I'm not sure if that means tomorrow (when the PET scan results come in) or after Monday (when we meet with an oncologist).

I want to ask if anyone has any advice, but that seems so broad. I'm just having a heck of a time maintaining sanity here. Most of my excess energy has gone toward research, research, and more research, and then I can pass the USEFUL stuff along to my parents, and they are thankful for that. Of course, when researching, you can't help but come across all those scary statistics too.

Here's one productive question: what are your thought about being seen initially by a pulmonologist versus an oncologist? His primary care clinic set an appointment up for next Wednesday with a pulmonologist, but it doesn't appear that the doctor does much with lung cancer. He works with an asthma and sleep apnea clinic. I figured that my Dad should be seeing an oncologist who specializes in lung cancer (plus didn't want to wait until Wednesday, since I'm not allowed to tell anyone!), so we now have an appointment at the Univ. of Minnesota on Monday.

Also, how important do you think it is to get the ball rolling on treatment versus waiting for primary care physicians to return from vacations, etc.?

Last, do any Minnesotans have experience with any of the oncologists at the Univ. of MN? Any recommendations (or lack thereof) based on "bedside manner," etc. Even if the news isn't great, we want someone who will offer HOPE and reason to fight.

Really "last," :wink: ... any advice for this waiting period? Anytime I'm not consciously directing my energy, I am having a really, really hard time.

I look forward to perusing further on this board, and reading other people's stories for ideas and support.

Amy

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Welcome, glad you found us. My oncologist was Dr. Duane, he taught at the U of M. I loved him. There are lots of doctors that you have to see. The pulmonologist usually is the one that tests to see if you can tolerate surgery. Click below and read my story. I am glad your Dad had his cancer found "by accident" that is much better than when it has spread. Please keep us posted on how he is doing and what the plans are.

Donna G

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Hi, Amy, welcome to the group!

I know it seems like things are happening at a snail's pace, but compared to the majority of people diagnosed with lung cancer, your dad and his medical team are moving quite rapidly. You already have a conclusive biopsy, so the specific type of lung cancer is known, and the PET scan will determine if there are any other suspicious areas in his body. At some point he may also get a brain MRI, since MRI is better than CT and much better than PET for showing brain details. And if lung surgery is contemplated, he will probably get a lung function test, which is generally done by a pulmonologist. If you're told that lung surgery is in the works, you should take that as very good news.

The treatment plan will come from the oncologist. And once treatment starts, the oncologist is the guy in charge and will be coordinating with your PCP and any other specialists brought into the case. I didn't see my PCP for at least a year after I started treatment, but when I did see him it was obvious that he had been kept up to date with everything.

If you haven't already, may I suggest that you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here.

Give us an update when you get some more info. Best wishes and Aloha,

Ned

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Hello Amy and welcome,

I am so sorry you had reason to find a site like this but so glad you have joined us!

It sounds like things are being dealt with pretty quickly so far, and that is good! It doesn't make the waiting any easier I know, but come here, read the good news and survivors forums and you will see that there are lots of stories of hope and survival here!

I can understand how hard it must be for you not to be able to talk to anyone yet about things.Just remember we are all here and you can talk to us any time you feel the need. The members here are wonderful about sharing advice, information and HOPE. Just let us know what's on your mind and we will be here to help you. Please don't hesitate to come to us with any concerns or questions.

Warmly

Christine

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Hi Amy and welcome. Glad you found this site to keep you company during this awful waiting period. I don't think there is any question about who your dad should be seeing if he has LC...oncologists for sure. The waiting is awful and we all worry about the speed of treatments. It probably doesn't make a huge difference in the outcome most of the time but it sure feels like an eternity. I suspect most people don't tell a lot about what is going on until they know all the facts themselves but it sure is hard keeping it inside. Hang in there and keep on asking all the questions here you want. Or just vent. There are tons of positive supportive people here for you and most importantly hope. Keep us posted on your dad's treatment plan and how you and he are doing. Take good care

Sandra

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Welcome Amy...

You have the right spot to be! You will find a wealth of information and support from the members here. It has been a god send for me, even though I did not find this place until after my Dad passed.

It sounds like what your Dad is going through is simular to what my Dad did when he was diagnosed. (the pulm Md consult and then the Onc MD)

Good luck to you and your Dad.

Please keep us updated

Shelli

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Hey Amy,

Welcome, I sent you a PM and we'll talk later. I just wanted to welcome you to the BEST Lung Cancer Support Group Site around! :wink:

I'm very sorry to hear about your wonderful dad. We'll all do our best to what this journey with you and with your dad. (((Amy)))

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Welcome Amy. Perhaps your dad is being sent to the pulmonologist to evaluate his lung function in case he is a candidate for surgery. The pulmonologist is the one who says yes or no for surgery. You will know a lot more after the pet scan report comes in about the extent of his cancer. I hope it can be stopped with surgery.

If the anxiety is getting to be too much for you, you could ask your gp for some xanax. You will feel much better once a treatment plan is implemented.

Don't pay any attention to the statistics. I have been dinking around with the stupid cancer for almost 5 years now.

Don M

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I am so thankful that I stumbled upon this site. Everyone's words of encouragement have been VERY helpful.

We got the PET scan results today, and while they aren't perfect, I think they could be a heck of a lot worse, as well. The cancer HAS spread to the lymph nodes, but from reading the scans, it appears as though it is somewhat contained in that area. (???) I don't find reference that it has spread to the other side, or the upper lobe, but perhaps others can decipher the notes below. Neither of my parents asked the doctor WHICH lymph nodes it had spread to - they heard that it had spread to the lymph nodes and that's all they got. The doctor did say that chemo would be the likely first step, which I understand is normal being that it has spread. They sent me the report and here are a few key words I picked up ...

"Head and neck: negative ...

also present in the adjacent satellite pleurae nodule compatible w/a metastasis. ... Hypermetabolism continues into the soft tissue density in the AP window ... also compatible w/mediastinal lymph node metastases. ... nothing below the diaphragm ... no pleural effusion on either side ... 2.9 cm x 1.6 cm and is in subpleural location."

If anyone has insight on any of the above, please let me know. It's not going to knock me down anymore than any of this has. The couple words I'm a little less familiar with are

* "AP window" (found a definition online, but not sure how it relates here),

* "subpleural location" (although I know all about the pleura from a lovely bout with pleurisy a few years back ... does that mean it IS or ISN'T in the pleura?), and

* mediastinal

I know that no spreading would have been better, but they also didn't say that it has spread to every region of his body, so I will try to take comfort in that latter piece.

I think an important piece is that my Dad remains VERY positive. He is all ready to fight this. I hope the oncologist doesn't steal that optimism from him. Based on the above, the oncologist won't just give him a "get your stuff in order" gloom and doom report, will he???

I had a tough day, but staying busy this evening has helped. I appreciate the Xanax suggestion. While I've never taken it, I felt desperate for something to calm my nerves a bit today. If I can't settle down in the next few days, I will need to figure out better ways to cope.

I can't thank you enough for your words of hope and encouragement. I can tell that I'm going to become a regular here, and I already look forward to the day when I can help someone else. : )

Amy

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Hi Amy.

I'm so sorry that your dad has been given this diagnosis. I'm afraid that I'm of little help with trying to understand the notes that you have posted, as all of this is still new to me too.

You said that your dad is very positive and that's wonderful!!!! It will help him to stay strong in the times ahead.

Although my dad was told by his Oncologist that he's Cancer is advanced and terminal, the Onc still had the most wonderfully positive attitude towards beating the beast down with a stick!!!!

Keep us updated Amy. This is a wonderful site, full of wonderful people, who have knowledge and experience....and big broad shoulders to carry each other on!!!

(((HUGS)))

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You might want to mention to your dad that when he FIRST walks into that Onc Office and the Onc Doc walks in, your dad might want to say to him/her "Before we get started, I just want you to know I'm here to fight this, and I want to do that as a TEAM"!

Good Luck & Keep us posted.

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I agree with Connie. And tell the doc you don't want any statistics or prognosis either. Unless you want to hear them. I was told very early on do not ask for information you do not want to hear. I have never asked and have never been told. Of course you can't avoid knowing them but I sure wouldn't want them ever to come out of my doctor's mouth.

Hope the first appointment goes well.

Sandra

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Thank you to everyone for your words of encouragement and support. I never would have believed that I could feel such comfort from people who HAD been complete strangers.

I did a little better over the weekend - was happy to hear that the cancer hadn't spread all over his body, and had fun as we went about "normal" (which, right now, is all slaving away renovating a condo I bought. My Dad is truly enjoying helping me, and I think it's great we have something else to put our energy into.)

So, my Mom, Dad, and I went to my father's first appointment with an oncologist today. While we had already received the Pathology reports, his general practioner hadn't interpreted much for him, although he knew that the cancer had spread to the lymph nodes.

You may recall that originally his GP had scheduled an appointment for him with a pulmonologist for this upcoming Wednesday. I was scared and frustrated, and after much research knew that he had to see an oncologist, so why wait? I am so, so, so happy that we did this. He saw a thoracic oncologist at the University of Minnesota, and this doctor specializes in lung cancer. He was SO knowledgeable and gave us so much confidence. What impressed me the most was that he was honest, didn't sugar-coat anything, yet gave my Dad HOPE. He stressed over and over what an "ideal candidate" my father would be for the combo (chemo and radiation simultaneously) treatment that he recommended. Also, my Dad doesn't know much about lung cancer, so hadn't yet seen any of the scary statistics. I was nervous the doctor would be too upfront about them. Instead, the doctor refused to give numbers. I loved this. He was honest (saying things like "a very slim" chance to be CURED, but will focus on treatment) but he never gave any percentages (like, __% of people in Stage 3B make it one year, etc.) When my Dad asked, he stressed that my Dad will very likely respond "much better" than an average patient, so he wouldn't give numbers. I'm glad. So my Dad knows it's very serious, yet hasn't had his hope sucked out.

While the doctor said over and over that he welcomed my father to get a second opinion, and said that my father could get treatment where ever he wanted, he DID stress to do it asap. Well, by the end of the conversation, my Dad said, "Let's do it. You can put the port in today if someone is available." He was so confident and ready to tackle this. I couldn't have been happier - my mom and I were both nervous he would drag his feet on this. The doctor called the radiation doctor, got my Dad an appointment for next Monday so the radiology folk can make their plan, and chemo and radiation will start within two weeks.

If you had told me two weeks ago that I would have thought this was "good," I would have burst into tears. I wish this wasn't our reality, but it is, and this is truly the absolute best case scenario. There were so many "ifs" ... If I hadn't bought a condo this summer, my Dad wouldn't have been painting the ceilings, and then he never would have done in for a pulled chest muscle, and he never would have had the X-ray that showed the nodules, and so on ...

I will most definitely keep you posted. I took 5 or 6 pages of notes (my hand and fingers are still sore), so have all sorts of details.

Thank you, thank you, thank you again. I have been reading many of your stories on this site over the last few days.

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Hello again Amy. It is so good to hear that you had a great first experience with the oncologist. He sounds like a good one. I remember how relieved after my first visit and receiving my treatment plan. Just darn relieved at how kind the doctors were, and the hope they gave me and that somebody was actually going to try to help me. It has been about a year since then. So take a deep sigh of relief and have your dad get lots of rest and stay healthy before he starts on his treatment.

Radiation for me was a breeze, but that all depends on the location of the tumours. Chemo was a little more interesting and everyone reacts differently but let's just hope your dad does well. They tell you about all the side effects, but that doesn't necessarily mean you are going to suffer from all of them.

I know you are telling your dad all about the survivor stories here. Sure sounds like you guys are starting off great on your journey. It is a journey for sure, just take it one step at a time. Prayers for your dad and that the treatment is successful.

Sandra

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Amy, thank you so much for the update. Your dad's oncologist sounds like a wonderful guy, and it was quite uplifting to read your account of the first meeting with him. You deserve a lot of credit for setting it up, and I'm sure your dad realizes that.

You should post some photos of your condo renovations, which I guess also deserve some credit for the timely diagnosis. By the way, I know what you mean about pulling muscles painting a ceiling -- I still remember the very unusual pain I got from a similar project close to 30 years ago! Aloha,

Ned

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Hi Amy-

Welcome to this site!!

It sounds like your dad has a great oncologist that he trusts and who has a solid treatment plan in place for him. People usually don't believe us when we say that once a treatment plan is in place, you feel better - but it sure is true, isn't it??

Thoughts and prayers going out for your dad. Please keep us posted on his progress.

Your dad is so lucky to have you by his side.

Hugs - Patti B.

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Hi Amy,

Sorry I am a little slow welcoming you.

I am glad to hear that your dads oncologist visit went good and that there is now a plan in place to start fightiing this beast!

You had asked about doc at the U of MN, I know that a Dr. Dudek is a lung specialist that I have heard is fabulous. He is involved in both clinical trials and patient care. In any case, you are in good hands at the U, I heard they do a great job.

You dont mention how close you are to the U but I wanted to mention that there is a in-person lung cancer group in St. Paul . If you have any interest in the group, just pm me.

Prayers that better days are ahead,

Wendy

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