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Pet scan Thursday


Blossomsmom

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My Mom was diagnosed with a combo of NSCLC & SCLC in March. It is extensive and very aggressive. She has had 2 treatments of Carboplatin & Tecentriq and on May 28th, Etoposide was added. She’s having a Pet scan on Thursday and Friday she’ll have bloodwork & we meet with the Onc after that for Pet scan results. I’m trying to anticipate the questions We need to ask depending on the Pet scan results. The only question I can come up with is “what now?”.  My Mom’s only question has ever been “how long do I have with treatment and without” as she wants to be here for my daughters wedding in October. I feel like I need more specific information as I am on the front lines with her through this battle and will be her caregiver depending on how this progresses. My question to those who have experienced your first scan after starting treatment, if it was good news as in “treatment is working and your tumors have shrunk” what questions did you ask or what questions did you wish you had asked? Or if the news was not good as in “treatment isn’t working” what were your questions or what did you wish you would have asked?

Any and all thoughts will be greatly appreciated! Thank you.

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To be honest my only questions are always, what will the side effects be, and what time frame are we looking at. 

My husband has extensive SCLC with brain mets - finished 5 cycles of chemo in January (carbo/Etoposide) and then he had 4 tecentriq treatments. He had to stop in February because he developed some sort of fungal nodules with cavitation in on his upper right lobe. We are waiting for blood results, and will most likely have to have Vats to determine what type of fungus it is. What his medical oncologist would say is they truly don’t have enough information to determine how tecentriq will affect SCLC. They believe it was that, that is causing his issues now.

For me, as harsh as it sounds being his only caregiver with two younger kids and my older son is getting married in September, my goal and hope has always been that he would make it to then. And what are his chances of doing so. I sometimes feel doctors nowadays are very apprehensive to give you time frames. When he was diagnosed at UPenn, all of the doctors were very upfront as hard as it was to hear, however at Fox Chase they are very wishy washy and are hesitant to really say. 

I hope your moms scan is good and she makes it to that wedding 😊

 

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Blossomsmom,

Your mother's question is indeed valid but it can never be answered precisely. I wrestled with how much time for my first year of treatment, then it became an obsession. My treatments kept yielding favorable results yet the disease recurred. I realize now that I'd have had a much better life if I'd spent my NED (no evidence of disease) time planning vacations. My all consuming worry turned into a deep depression.  

When I found my first on-line site, I encountered a man who ironically had been diagnosed about the same time as me and instead of fretting away life, he was living large. He was a physician, a radiologist, and yet he could put away his medical knowledge and focus on living life enjoying his family or friends. I was fortunate to latch on to his lifestyle example and learned two very important things: no one knows how much time one has left and its not the length of time but what one does with it that matters.

Help your mom latch on to the October wedding as an intermediate life goal.  Help her find another one, say a Christmas family reunion that you could plan together, then another. We have a choice. Yes lung cancer is a disease that can result in death but it does not establish an end date. So help mom choose to live.

Indeed there are many medical questions about progression or regression that can be asked of her medical team. But they are not equipped to answer the most important one: what is the purpose of life. Help your mother find that answer, a little bit at a time.

Stay the course.

Tom

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Thank you for your reply. I’m sorry that you and your husband are going through this. I can’t even imagine how hard it must be especially having young children. 

My Mom’s oncologist has been very upfront and honest. She is so sweet and compassionate yet straightforward. She knows my Mom is focused on the upcoming wedding of my daughter and is encouraging yet realistic. I guess we’ll know soon enough if she will dance at the wedding or not.

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Hi Tom. Thank you for your reply, I do appreciate your thoughts. My mom has had some very specific goals since being told last November that she most likely had lung cancer. The first being here for the birth of her first great great granddaughter in March. Yep, you read that right, a great great granddaughter. You see my Mom just turned 90. That was her next goal, to make it to 90. And now her sights are set on my daughters October wedding. She’s been a widow since my dad died (of SCLC) in 1991. She is fiercely independent, still living on her own & driving. Her long term goal (long term being a relative term when you are her age) is to remain that way. But she also is more interested in the quality of her life and I know recently she has questioned her decision to pursue treatment. I’m hoping that the results of the petscan will be positive and give her renewed strength to continue to meet the challenges that are before her. And I hope that if the petscan results are not what we hope for that I will have the strength to respect whatever decision she makes about her future. And that I have what it takes to make sure that she is comfortable and at peace in her own home on her own terms for the remainder of her life. I’ve thought many times that I wish they had never found her cancer only because for me it started a clock ticking down her time. A clock I had, up until then, even with her advancing age, been able to block out.  Ignorance was bliss? 

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Blossomsmom,

I completely understand.

I recall my mom and dad's aging process. I was given an early reveal of contemplating the end of my life well before my parents entering their zone of concern. Therefore, I had to think my situation over and communicate my desires and preferences. My father accepted; my mother did not. Then when they faced their end time, each had a differing approach. My task was to ensure they thought things though and then to support their differing choice. It was the hardest thing I've ever done, but on reflection it was the right thing to do.

You are on the right track. You mom is defining her desires in terms of intermediate goals and you and supporting and encouraging. And, I'm completely sure you will have the strength to respect her future decisions.  I know that because your introduction of doubt confirms you've thought about it. I'm sure you have what it takes to see your mom's desires through. 

Stay the course.

Tom

  

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Tom, thank you for your kind words and insight. Having been on both sides of this you have a unique view of the situation. I cannot fathom going through what you have experienced. I will continue to try to do what’s right for my Mom and as you say “stay the course”.

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