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ConcernedDaughter19

Waiting on biopsy + results during COVID-19

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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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Hi ... I'm really sorry to hear about your dad and the circumstances you both are in.

Waiting is really harsh on everyone. Assuming that your dad has metastatic lung cancer which means stage IV, it is either non-small cell lung cancer or small cell lung cancer.  I believe the standard first-line treatment is chemotherapy for both but unfortunately, the treatment for each is different. For example Cisplatin + Alimta for NSCLC and Cisplatin + Etoposide for SCLC. The type of cancer needs to be confirmed to start treatment.

I would not want to say how long your dad has. There are many instances of prolonging life with stage 4 cancers, especially with some of the newer treatments available. I wish you and your dad all the best.  Please keep us posted. I'm sure you will hear from others.

Steve

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Concerned Daughter,

What a terrible situation you are in.  While the disease seems advanced you really do need to get a firm diagnosis so that you can understand the Stage, the Treatment Plan and the Prognosis.  The medical people will be the best source of information on all the important questions you have.  The best thing is to write down your questions and then make sure you get answers from them, be firm if you need to be.

My prayers go out to you and your father.  Please let us know what the results of the CT Scan and the treatment plan.  Many here have vast experience with almost any form of treatment for this disease.

Lou

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I'm so sorry your family is in this position.  The lung cancer HELPLine can also answer questions and help find resources.  It's a free service available for patients and caregivers.  https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

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Hi so sorry you're here. How old is your Dad?  My husband has small cell lung cancer (terminal).  He is currently doing treatment and is tolerating it very well.  We were somewhat in the same position as you are now.  Waiting for scans, a referral appt. to a Pulm was over a month away, I finally had to go through the ER due to the weight loss and severe abdominal pain.  Once you have a definite diagnosis stay hopeful that he can do some treatment.  Best wishes to you.  Things moved fairly quickly after biopsy so, hang in there!!!

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Thank you for your responses. I've answered any questions or comments from above in this response below:

My dad is 67 yr o.

We've only had an ultrasound on his liver and a CT of his full torso. He is getting his lung biopsy on Wednesday but we are going to have to wait for the liver (although it is presumed it is metastasized lung cancer). I have no idea how long the results will take, but we are in Bermuda and the medical services here tend to be drawn out. I am hoping we have someone on-island who can review the biopsy since our airport is closed (due to Coronavirus) and I have no idea how we would get the sample out otherwise.

We certainly want to try treatment options, depending on what is available/type of cancer. We will just have to wait with baited breath!

 

 

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update: They have cancelled the biopsy which was due to take place today. They said his heart was too weak to be able to tolerate the procedure/anesthesis. They are instead going to do a needle biopsy only, but have said that with his poor health he may not make it though the procedure. He has a pleural effusion in the lung which has the cancer. They are not going to biopsy his lever due to needle spread. They confirmed someone on-island can review the biopsy (doesn't have to be sent away) and we should hopefully know soon. At this stage we are just awaiting the scheduling of a biopsy yet again. 

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This is a very hard situation for you, but the biopsy and final diagnosis are so important to determining the correct treatment protocol.  I hope you'll be seeing the doctor on those important items soon.

Lou

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