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ConcernedDaughter19

Waiting on biopsy + results during COVID-19

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*copied from my welcome post*

 

Hi Everyone - sorry to meet under these circumstances

My dad has been unwell for a long time. After years of poor health his "liver numbers" shot up from a steady 30 (steady for 6 years), to 380 then 540 within a couple weeks. He was given an ultrasound immediately and they could see his liver was "swollen and full of lumps". He waited weeks for a CT (the only one on island was being repaired) and we were all devastated to learn that it strongly suggested cancer throughout a lung, through to the liver, and possible in lymph nodes as well. The multiple doctors who have reviewed so far have said that it is metastatic lung cancer even though we have yet to have a biopsy. 

We have waited  ages for the CT, watching him be in increasing pain, with his appetite shrinking daily. 

We now await the biospy (about 3 weeks since CT) which he is due to get next week. We are terrified of sending him into the country's ONLY hospital during this pandemic for what is 'technically' a non-essential elective procedure, but we (family and doctors) all feel that he cannot wait any longer for the biospy/wait for this pandemic to calm. Determining the type of cancer will help us know how quick it will spread and how long he has. We have 4 days to wait for the biopsy and who knows how long for the results. 

I cannot even spend time with my dad right now because of the pandemic and I feel like i am watching him wither away... via skype. 

I am hoping to gain some sort of idea (realistic) about how much time we may have. My mom and I are trying to be realistic. We understand that this is terminal. 

Would anyone who has had a loved one pass (or is going through this now) be able to give us an idea of where we are in the process? He is in poor health in pretty much all areas. I know this hurts his prognosis. He was a chain smoker, heavy drinker (although he gave up Cigarettes in 2010 and hasn't been able to drink for months). He obviously hasn't had any treatment given the fact we don't even know which type he has. When I try to get answers online, everything links the nausea with the chemotherapy. From all these things, we know we won't have years. I am just trying to determine if these symptoms are indicating weeks vs months. 

I am wishing everyone comfort and love during the journey

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Concerned Daughter,

Welcome here.

Wow! You are asking tough questions and you should understand I'm not a doctor in offering a response about your dad's prognosis. I assume his doctors are right about the primary tumor being lung cancer, metastasized to the liver and lymphatic system. But, his liver condition could also be hypo-dense cysts associated with liver disease. I wonder why the biopsy results take 4 days. Lung cancer type can be diagnosed by a pathologist in near real time. The biopsied material is identified by a medical microscope. A type determination should be available almost immediately. 

Rather than offer a life prognosis, I think you should help your dad make a decision between lung cancer treatment (chemo-radiation) and hospice admission. If he is in pain now then that suggests metastasis to bones or perhaps the liver complications. I would try and help your dad describe the type and nature of his current pain and communicate that level to his physicians. Hospice admission would focus on palliative care rather than curative care. Its emphasis would be to reduce pain. Here is information on palliative care.

I'm not capable of offering a view of how much remain life your dad has. I can only tell you that if I had his symptoms, I'd choose hospice and palliative care.

Stay the course.

Tom

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Concerned Daughter-

Hi there, I am sorry to hear about this journey you and your family are on.  It is never easy to go through a cancer diagnosis, especially when things do not happen as quickly as we want them to.  I understand your concern, as a caregiver for my mom who battled lung cancer twice.  The uncertainty of tomorrow or next week is scary.  I wish I had a crystal ball to tell your future, but I don't.  But I do want to echo Tom's suggestion - a hospice program.  Hospice programs are wonderful and as Tom stated, assist with pain reduction.  My uncle recently passed away from an unknown type of cancer that was in his liver.  He had severe pain and hospice helped control the pain.  The nurses also got all of the essentials my uncle needed to assist in his daily living - hospital bed, shower chair, wheelchair, etc.  I highly recommend getting him on the program while official diagnosis and treatment plan are set up.  

Please know we are here for you.

Take Care,

Steff

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Thank you both for your replies and responses. 

We are at the mercy of a very small and limited health system here in Bermuda (which is currently focused on the coronavirus pandemic arriving in the country). 

He is due to get his biopsy on Wednesday at which point we will learn more. I have no idea how long the turnaround time will be for results. I know a biopsy I had was required to be sent away and came with a 2-week wait. If that is the case for my dad's biopsy, we may be stuck as our airport is closed due to the virus. He is scared to go to the hospital anyway due to risk of exposure even to a simple cold. 

I hate that our family (who all live w/in 10 mins of each other) are so separate due to the virus because i just feel like we are missing out on key time that we could be spending as a family. The thought that these could be his last days, and he is almost isolated is heart breaking. If he has to go into hospice care or even has to be hospitalized, we would not be allowed to visit. 

I will ask my mom what conversations they have had surrounding hospice care.

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I completely understand where you are coming from as it relates to the separation from our family.  I got to see my mom through her window on Saturday after I left groceries in the garage for her.  My dad is in an adult family home with mild dementia.  He somewhat understands what is going on, but it's tough on my mom when he asks for her to come over for a visit or to pick him up for a drive.  Telephone conversations are limited for me and him as it's difficult to get someone to answer the phone when the 1 staff member is dealing with 6 needy men!  He doesn't remember that he can call me, so my messages of love and hugs go through my mom.  I've not physically seen him since Christmas and I am in need of a big hug from my daddy!

I'm sorry that this already crappy situation is made worse due to the isolation that COVID has brought.  Know that I am thinking of you and I am sending a virtual hug your way.

Take Care,
Steff

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