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Supporting my Father ... Advice Needed!!!


Manos

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Hello All,

My Father has had a rough few weeks.  He went to see his doctor for a lingering cough and after a few tests we're now in the place where there are more test scheduled still but an upcoming 1st oncology appointment.  

I live out of state and I am looking for advice on if I should fly out to be there to support my father.  If I had unlimited vacation days and the budget I'd go for sure but I know that I will need to spend my vacation days wisely.  I was wondering, beyond the emotional support is there value in me being there physically for that 1st appointment or if I should save it for some of the other important milestones of treatment?  I want to be involved and want as much information as possible to make a decision if I should move home to help my parents.  My mother is there to help but she will need my help at some point I'm sure.  

Would love to hear some stories of your first appointment and possibly how important or not important it was for you for your adult son ( we are close) to be there or if it is a distraction?

 

Thank you!

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Hi Manos, your father's oncologist may limit the number of visitors to each appointment. For instance, I'm not allowed to bring anyone. You might want to attend either virtually or by conference call so you can get first-hand information. It would also be a good idea to add your contact information to his privacy forms.

I expect you'll be waiting a while for test results and biomarker testing to come back and for your father to get his treatment plan. Waiting is very difficult, but try to stay calm (I know, easier said than done). 

I'm not sure it's a good idea to travel. If your father undergoes chemo or immunotherapy, his immune system will be depleted and he could easily become ill. When I had chemo (before Covid), I stayed away from everyone for fear of getting the flu, even though I had had a flu shot.  Covid just makes visiting riskier. I would follow the oncologist's advice. 

His doctor may suggest getting immunizations up to date before treatment. I did that, and also completed necessary dental work before starting chemo. 

Hope this helps.

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Has he actually been diagnosed with cancer? Usually a pulmonologist is the first stop for something like a cough--has he had a biopsy, CT scan, and/or PET-CT scan? Those are usually the first tests, before an oncologist is called in. 

I don't know how resilient your dad normally is about things, but unless he's extraordinarily fragile emotionally, I think he can get through these initial appointments without your being there. You can always ask him. I didn't need my kids out here when I was first diagnosed and  had surgery. When the cancer came back three years later and I was starting chemo and immunotherapy, my daughter came out and stayed here for three months or so. It was nice having her here, especially since my whole family is across the country and travel was difficult. I could have managed without her here, but she was able to and offered. She's back home now.

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Thank you @Judy M2 I appreciate the words of advice.  With all the tests that have been done and the upcoming tests before the oncology appointment,  I was assuming they'd have a lot of details and options for a treatment plan by that 1st appointment. Is that not always the case?

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Manos,

Welcome here!

My first oncology appointment was a frightening event. I was hospitalized for coughing up blood, my first indication something was wrong. I learned in the ER that I likely had lung cancer. I met my oncologist in the hospital and he scheduled all my diagnostics while in the hospital: blood work, CT scan, bone scan, brain scan, and an attempt to biopsy my tumor with a flexible bronchoscope. That attempt failed. While in the hospital with little feedback about the stage and type of lung cancer, fear set in. I was discharged after 4 days but had several bouts of coughing up more blood after discharge. My oncologist told me the large tumor in my right main stem bronchus was the cause of coughing, and we'd discuss resolving the problem in my first in-office consultation several days after discharge.

The first thing I did after discharge was Google Search lung cancer. That was a mistake and my uneducated reading did nothing but amp my fear. I was so unsettled that I didn't ask a single question or say anything during my first appointment. My wife did all the talking. I'm a retired soldier, unafraid of the battlefield, but when facing the consequences of death by lung cancer, learned from Google, combined with the horror stories, and advertisements for scam-miracle cures served up by searches, I was undone. Thankfully my wife attended my first consultation and her questions uncovered the probability of a path to surgery.

From my experience and long tenure of survivorship (diagnosed in 2004), I now know no one should attend a first oncology consultation alone. Four ears are vastly better than two. The vocabulary of lung cancer is daunting, and there are so many things to understand. So if your mom is up to the task, then she ought to be an effective second set of ears. If not, then the first consultation for me was the most important, and my suggestion would be for you to attend that session. Once a treatment plan is established, the in-treatment consultations become pro-forma events but getting to the treatment plan will require understanding and terribly perceptive questions. Here are some resources. First, my suggestions for the newly diagnosed, here. Next, suggest this resource to your parents and you might spend some time also reading in. Last, here is some help with the daunting vocabulary.

You might encourage your dad or mom or both to join us here. The most difficult time in this disease is getting to a treatment plan. Unfortunately, that time starts now for your dad.

Stay the course.

Tom

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@LexieCatThank you for your words of advice.  It is encouraging to hear that you didn't necessarily need your kids there but it was nice to have.  He's had a CT scan already, the biopsy, PET scan is this week.  He's already been told that based on the CT scan it's "probably" cancer.  I was actually visiting for the past few weeks and was there for that first "I have this lingering cough" appointment through the results of the CT scan and a couple other tests.  Though I wanted to be there to support him through these next few tests I was kind of in denial and kept my plans to fly home.  I've only been back for a few days.   I'm holding on to hope that they're all wrong but I do have this feeling that I should be there to support him through that tough first appointment where he'll get the details from the oncologist.  He is a strong guy but the few weeks I spent home I've caught him any my mother crying several times so I know he's pretty emotionally fragile to break down and cry in front of me, worried that it's the last time he'll get to see me.  I wonder if I do fly back home, if it'll hurt or help any decisions he has to make.  I'm fully willing to execute an extended move back home to take care of him. I don't want him to feel bad or guilty about anything or feel like I'm giving up something just to care for him.  It's a choice I don't really have to think about to much and I want to be there to support in any way I can.  

Anyway.  Thank you for responding and sharing your experiences.  

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In my case, my bronchoscopy had already been done by my pulmonologist and the CT scan and biopsy results showed (inoperable) lung cancer. Then I met with the medical and radiation oncologists to create the treatment plan. But I don't think the biomarker tests came back until after I had started chemo and radiation. I kind of wish I had foregone those treatments and waited for the biomarker results, because targeted therapy is now the recommended first-line treatment for my stage of EGFR+ cancer and the side effects are much more tolerable than chemo and radiation. 

As Tom says, the waiting for the treatment plan is difficult. And stay away from Dr. Google. This site and the GO2 Foundation are great resources. 

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@Tom Galli Thank you for sharing your experience and those resources.  I gave my mom advice not to focus on her "Google" research and go through the process and listen to the doctors.  I too fell under that same trap and my mind is racing full of thoughts and what-ifs.  

To all that have replied.  Thank you again for sharing your experiences and wish you all the best.  

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Good luck--yeah, every person is different. I've been on my own and living alone for a long time, so it's rare that I need that kind of support.

One other suggestion--you might tell him about this forum. The people here have seen me through my initial diagnosis four years ago, surgery, a recurrence, and chemo/immunotherapy. Nothing like having a support system that gets exactly what you're going through.

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Good luck Manos. In my case I actually did not want anyone else to be there for the first consult. I wanted to be able to ask hard questions and digest them myself before filling in my wife. I am fairly young (59) and was pretty well informed going in. Dr Google can be scary and lead you down a rabbit hole but I am good on Google because of my profession and was able to filter out the crap.

You might ask your Dad if this forum would be of interest. Once I found Lungevity it was a God send (actually Google). This is a safe place. Maybe he could just lurk for a bit?

Peace

Tom

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