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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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The doctors messed up his biopsy, and whilst the hospital cancelled all elective procedures, he found himself battling for an opportunity to have the biopsy. It was booked, then cancelled, then booked again. He is due to go in on Monday. He has so much abdominal pain that he has been on morphine for several days now.

He went for pre-biopsy bloodwork this afternoon and learned that despite being off of warfarin, his blood levels indicated he was (a sign of liver lesions). He needed to go on a medication to correct this prior to the biopsy. Pharmacies were due to close within a few minutes and the doctor still hadn't called it in. the country goes on a blanket curfew as of 8pm tonight, with no one allowed to be on the roads, else risking arrest, fines and jail.

He collapsed on his way back into the house and the family was called to assist in lifting him up/getting him in. While we awaited the prescription call, the doctor called back to say more results had been sent in and his kidneys were failing - he needed to go to the hospital immediately. 

He cant walk. He can't eat. He can't stand. He's lost 30 lbs. It's only been one month since this strange journey began and we don't really even have an answer as to what is going on. I can't help but be in a negative place right now. I am trying to be happy that he is now in the hospital, will receive fluids/nutrients - i just feel hopeless

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I am so sorry that your family is going through this diagnosis at such an awful time, I will pray for your father and hope that you may spend time with him now! My mother had hospice at our home 15 years ago and they were absolutely wonderful, even this pandemic could never keep me from seeing my loved ones in their time of need! God Bless your family, I will keep you in my prayers!

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My dad was hospitalized until Thursday (6 days) and thankfully had a liver tumor biopsy that morning before release, despite his lungs initially having been the focus. They decided to work on his liver since his abdominal pain was so severe (he is having to take up to 10mg morphine a day). They successfully biopsied the liver and noted it was very enlarged and full of masses.

He lost a further 10 lbs in hospital (40 total in the span of exactly 1 month).

The results were sent off-island for further review but the oncologist who reviewed them on island said that he has a metastatic lymphoma - with the biopsy showing Small Round Blue cell Tumor. (this is how the information was passed on to me, i was not there obviously).  I've been trying to research and see what that means and see that there are quite a few types of small round blue cell cancers. We have to wait until April 21st for the oncologist appointment where they will review the results and talk about prognosis and treatment options. 

I know small cell tumors are more aggressive. We already waited a month for the CT results to turn into a biopsy and an answer, and it will now technically be a month and a half before we actually get the answer. I can't help but be aware that time is of the essence here, especially since we are now aware of the cell type... 

 

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Bermuda is a paradise I've visited several times. With each visit, I've learned that there are many challenges with island living. I understand fresh water is precious and all roofs are designed to collect rainfall. Now I'm learning from your experience about delays in obtaining laboratory results that must be sent "off-island". I bet the COVID-19 outbreak will further slow results.

One thing certain about the "small round blue-stained cells" is your dad has metastatic disease. Chemotherapy treatment needs a definitive diagnosis but radiation does not. Might you arrange a radiation oncologist consultation. Perhaps palliative radiation might relieve his abdominal pain.

Stay the course.

Tom

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The biopsy results from abroad confirmed small cell lung cancer, extensive/metastasized. This was maybe April 16th. He was given 3 months if he refused chemo, but with chemo longer. They explained it may travel to his brain and we could have an MRI if we wanted to know.

They set him up to start chemo for April 21st. He was to get 2 drugs, (carboblacin and etokocide (not sure of spelling)). When he arrive on Tuesday, he was told that he was too unwell to start chemo. He hasn't been able to eat for weeks, and had been existing off of watermelon cubes and sips of water or pedialyte... the only things that he would not vomit after eating/drinking. They gave him an IV. The nurse walked in and said to my mom, "My goodness, how long has he been sick". She had no idea he had only just been diagnosed... and this decline has been so rapid.

On Wednesday 22nd, they attempted chemo, only giving him the weaker drug. He wasn't tolerating it at all. He was sent home earlier than expected. The nurses felt like was far too ill for chemo and needed hospice. They said he likely only has a few days to live.

It has only been 1 week since learning his dx.... In that time, His brain functions have depleted. He is unrecognizable. He cannot communicate. We know he has lost more weight, but he now cannot even stand unassisted, so knowing his weight is impossible. His hands are curling under and he doesn't seem to have control over them any more. 1 week. I don't even get how this is possible.

We've been waiting for more than 24 hours  to receive the exemption letter for permission to visit him before he passes....We cannot go see him without the letter, we have been told that if caught, we risk jail and thousands in fines.This all feels like a sick joke. 

 

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I'm very sorry to hear what's happening with your dad.  Hospice can be a godsend. My mom went into hospice care just a few days before she died from metastatic breast cancer. The hospice people were so kind and helpful and my mom's last days and her passing were peaceful and pain free. I hope you're able to quickly get your exemption.

BridgetO

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I too am very sorry to hear that your dad is so unwell and echo Bridget's and Tom's reviews of Hospice.

My mom was recently admitted to the hospital for sepsis and was there for 3 nights.  It killed me not to be with her and it felt like a sick joke to me too.  What an awful thing to go through at the worst possible time - I am so sorry. Please know we are here for you.

Take Care,

Steff

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Unfortunately, I am sad to report that my dad passed away yesterday morning. It was his wedding anniversary with my mom. She sat with him, holding his hand and told him she loved him. We are trying to find comfort that he held on to 'make it another year' with her. 

I have appreciated the support you have all offered during this past month. This trajectory has been absolutely unbelievable. There were only 9 days between diagnosis and his passing. 

 

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I am very sorry to hear about your dad passing away, I pray the memories you made will comfort you at this time. May God bless your family!

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