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Step dad going through tests - not sure what to expect


lsaut

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Hi, 

I'm travelling tomorrow to appointments three hours away for my step dad, with whom I am very close. His rheumotologist ordered an xray in September, which prompted him to order a Catscan, and late last week we got a call from a Cancer Centre to come immediately (less than a week) for the following tests: lung biopsy, MRI of the brain, abdomen and chest catscan and bone scan. 

 

He is obviously upset and so am I. I have no idea what to expect, but know he has been feeling poor for many months. Coughing up a lot of phlegm, chest infections, fatigue, and honestly I think he is confused a lot of the time. I can't imagine they would order this many tests if they didn't feel that something was wrong. 

 

How do I support him through this without getting emotional myself? Waiting for answers is so hard. Thank you!~

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Its okay to let him know that you are worried for him. Do tell him you are there for him and will be there every step of the way. This doesn't have to be an immediate death sentence. Write down any questions you have and take notes.

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Meant to add that many are living longer with this as a chronic disease. New treatments are in development and the newest ones on the market are giving renewed hope. Demand that they take enough material to to genetic testing.

Explore this site, there is a lung cancer 101 page that will help you become a great advocate for your dad. Also I think a list of questions is in that section.

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Hi Isaut, 

I'm sorry that you have to be here. We are here for you. Here is a great link to resources that LUNGevity has on the website. http://www.lungevity.org/support-survivorship/caregiver-resource-center/practical-resources-for-caregivers

I would like to mention that over the years that I have been able to connect with survivors, most of them mention that having one notebook that gets written in often works well. Whether it is for questions, taking notes based off of what doctors say, treatment options, next steps etc...That may be a good way to start. You may get an overwhelming amount of information all at once, so a notebook will help you come back to it when you are ready. 

 

If you have any questions please let me know. Please keep posting, I look forward to getting to know you. 

 

Cindy

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Insaut,

 

Welcome here.  We've many who are survivors and may have useful information so feel free to ask questions.

 

I'm not a doctor so keep that in mind as you read my answer.

 

When an X-ray showed a large tumor in my right main-stem bronchus, doctors were suspicious that it was cancer.  They ordered the same battery of testing on me that your step-dad is receiving. The most significant of these is a biopsy.  It may not be the first test performed but it will allow the type of cancer to be learned.  Here is information on lung cancer types:  http://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer

 

The other tests you describe: brain scan, bone scan, CT (pronounced cat) scan of chest and abdomen allow doctors to determine the stage of cancer.  Here is information on cancer stages:  http://www.lungevity.org/about-lung-cancer/lung-cancer-101/lung-cancer-staging

 

Almost every lung cancer patient receives most if not all of the aforementioned tests.  The results are important because they indicate how your step-dad's cancer can be treated. 

 

How do you support your step-dad without emotion?  I have no idea.  If he has cancer, it is a very serious disease and the diagnosis phase of my treatment was a very emotional time for my wife and I.  Martha, my wife, prayed.  I did also but spent a lot of time researching lung cancer.  I felt some comfort learning about the disease and treatment options.  Be careful, however, of too much gloom and doom.  Survival statistics don't paint a rosy picture but I'm alive after more than 11 years after diagnosis.  Dr. Stephen Jay Gould was diagnosed with lung cancer and wrote an essay about the importance of understanding the limitation of statistics.  Here is a website where you can listen to his essay -

 

Stay the course.

 

Tom

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Hey Isaut,

 

You people had an appointment ? 

I just want to tell you to be with your step dad forever because at his age, they need emotional support more than medical support. Make him happy.

God bless !

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Hi and thank you to everyone who replied. Today we had the bone scan and they fit us in for an unscheduled catscan. Thursday morning is the brain MRI and Friday is the biospy. I'm hoping they might be able to tell us some thing while we are in the city Friday, given that it's a 3 hour drive each way to the hospital, but I guess we will wait to see.

The bone scan was really tough for him - he finds is very very painful to lie on his back.

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That is exactly the approach I think we will take. I'm fortunate enough to still have some vacation days left to take him to these appointments and will look at time off in the new year if required. We have been in the process of trying to sell his house and renovating our basement since July for him, but I'm hoping he will move in even without the house sold so he can spend as much time as possible with my two year old son.

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One question I do have... do you think we should ask the doctor/would he be able to tell us any details right after the biopsy - especially given that the MRI, Catscan and Bone Scan will have been done already? 

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Insaut,

 

To your question: would the doctor be able to tell you details right after biopsy?

 

Yes as to type and stage of cancer.  When this is known, other questions will need to be answered and these are best answered in a face-to-face consultation.  So I can't see how you can avoid another three hour drive.  What are these questions?

 

Can the cancer be treated?  What are treatment options?  What are projections of effectiveness of these treatments?  Should the cancer be treated? Might palliative treatment be appropriate?  Might hospice care be appropriate?  All these and more should be explored at your consult and the doctor will explain and you should question to ensure you understand your choices and desires.

 

Stay the course.

 

Tom

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Add the question: When can you expect results of mutation testing. (Usually only done if stage 4). If there are metastices present I would insist that they add testing for PDL-1 expression.

The palliative treatment Tom mentioned is an important thing to look into. The palliative care programs have demonstrated that they can improve quality of life and extend life a bit. The doctors and other clinicians have had additional certification in management of chronic disease issues, including pain management. They have experience in managing new issues that long term survival and can address them in a timely manner. Additionally, they are in a position to recommend new, life extending treatments that a hospice clinician cannot.

Breathe hope!

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Nothing new to update other than we had the MRI and biopsy last week. Have been told to wait for a call from the doctor at some point this week. He has decided to take a leave from work and move in with us. He has been in constant pain around the biopsy site (below left shoulder) and his back, and for now has been told to just use tylenol. Pain management will be one of the things I discuss when we see the doctor for the diagnosis and prognosis. He spent the weekend with my husband as my 2 year old and I had to be away, and apparently he asked 4 times within a span of 2 minutes if he could make my husband a bagel for breakfast. DH said it was quite unnerving :(

 

I'll hopefully have an update this week! Thanks again. 

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It will be a week tomorrow morning since the biopsy was completed. All other tests were done before that. We still haven't had a call to book a follow up appointment. It is feeling like the longest wait ever. Booked a four day/three night vacation at a nearby ski village for over Christmas - gives us all something to look forward to. Will be going with step dad, husband, and young toddler. 

 

Would you call and ask to book a follow up? I don't want to be too pushy, but would like answers. 

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Great idea for the vacation.  We always did that while awaiting news on scans or treatment outcome.  Reduced the scanziety significantly.  

 

Don't feel like you are being too pushy with your medical practitioners.  You are paying for their service.  You are a customer.  If you took your car in for repair and the mechanic partially repaired it telling you he ordered parts and he'd contact you when they came in, would you feel like you were being pushy to call and ask the status on the parts delivery?  

 

You deserve answers.  You are paying for them.  Call away!

 

Stay the course and have fun on your vacation!

 

Tom

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I broke down and called today. They are still waiting for pathology results. They said likely today or tomorrow and then they will triage through the Cancer Assessment Centre and assign a doctor. That should happen quickly once the results are back. Fingers Crossed!

 

I'm so glad that the nurses and representatives I'm talking to on the phone are willing to speak to me for bookings. It makes things so much easier for both me and my step dad!

 

Decorating for Christmas this weekend - hopefully that will help keep his spirits up! He hasn't been too hungry this week but he's diabetic so I'm making sure he's eating small healthy meals. He's been really cold as well (it's damp here) so wearing long underwear every day is helping with that. He's been working lightly all week as well, but found that his normally busy day was really hard to get through. 

 

I have concert tickets for the four of us (step dad, husband, and 2 year old) for the next two weekends - a kids concert and a fiddle and step dance concert the next weekend, so that gives him things to look forward too as well! Thanks for listening!

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Thank you for continuing to make those plans. As Tom says, its the right thing to do. Often the family treats this like life is at an end and the patient is made of the most fragile glass.

Does your health care facility have an oncology patient navigator? If yes, make contact with that individual and stay in regular contact as you work your way through the diagnosis and treatment process. S/He will help you through the rough parts.

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Got the call today that he does indeed have lung cancer. Appointment made for a week from tomorrow with two doctors to discuss details and treatment options. I knew this was going to be the outcome but that doesn't make it any easier. 

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No it isn't easier but now you do know what you are facing. Its too soon to know the results of the mutation testing but the enemy has a name and that gives you power to begin learning about his options.

Remember, this is no longer an immediate death sentence. Many, like me, are living with this long term as a chronic disease. I'm 5+ years with a stage 4 diagnosis of adenocarcinoma. My co workers husband is 7+ years with small cell limited.

When it comes time for that Christmas trip, keep it. A couple day's break from treatment will not hurt him or the outcome of that treatment.

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Agree completely with Denzie, information is power.  If you were told type and stage, read into the disease.  Earlier I posted links that should give you a start point.  

 

Now, with the benefit of survivor tenure, I look back upon my treatment experience in three categories.  There was life before cancer, life during treatment, and life after treatment.  Life was different in each phase and it took me a while to realize that life before cancer will never return.  That does not mean that life after treatment, my new normal, is not just as enjoyable and fulfilling.  To get to his new normal, he needs to navigate treatment.  Let us know his treatment details when they are firm.  Many here will have tips and suggestions for easing the treatment burden and side effects.

 

Have a great Christmas trip.  Plan another - say Easter.

 

Stay the course.

 

Tom

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Thank you. I will most definitely post more details once we know them. It's hard, I'm not going to lie. I feel like I've been hit by a truck. Physical response to stress, I guess. We are so close and other than my husband or son, he's my closest person. It's pretty overwhelming... I'm trying to slim back my responsibilities as much as I can and just spend quality time with him. 

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