What I know so far: suspected metastatic liver cancer, unknown primary. No colon cancer detected. Small nodules in this lungs one stable two new ones, and scarring. Undetermined cause of T12 spine fracture. COPD and asthma. Non drinker and non smoker, though he did have significant asbestos exposure through work. Stage 3 Kidney disease doesn’t seem to be under control. Heart disease and strokes this year. Diabetes. I only knew about the strokes and diabetes until I took over managing medical appointments. Mom has declined in memory, which is why I’ve taken over. She literally doesn’t hear the words cancer when we’ve been on doctor calls. She’s overwhelmed. Dad has never been one to talk about anything.
I want to make sure I ask all the questions, but I don’t want to alarm them or upset them. Any tips?
I am sorry to hear about your father and his current and suspected medical issues.
I saw your post and thought I could share some resources with you from the Canadian Cancer Society. https://cancer.ca/en/cancer-information/resources/publications/questions-to-ask I used this pamphlet to keep a record of my questions and write down the answers as well. You could print this out and use it during the consult.
By coincidence, my cancer is/was (Stage IV) unknown primary as well, and I was diagnosed and treated between 2016 and 2018.
Lots of support and information here to share and discover.
Caregivers need to look after themselves as well. https://cancer.ca/en/living-with-cancer/helping-someone-with-cancer/caregiving/taking-care-of-yourself This is a good resource to remind us that we need to keep ourselves from burning out as a caregiver.
Social workers at the hospital are there for the family members as well. Perhaps some opportunity for your mother to talk to someone may help her being so overwhelmed. Many hospitals have support groups and or know where to find one close by.
I read in your bio that you find it hard to initiate the discussions needed, given the family dynamics. Perhaps the forthcoming biopsy information will help to break the ice for you and your family. It's tough for sure, and there will be decisions needing to be made moving forward for all concerned. Do what you can and seek assistance from others if available, and if offered.
I hope this helps get you started. Look around the site for other forums and groups to post and read in.
We met with the surgeon who said because there are tumours throughout his liver (over a dozen), surgery is not an option and it would just come back. It’s such a strange system - he said he couldn’t speak for the chemo or radiation doctors. My dad said ‘yeah, chemo, let’s go for that.’ When I asked the surgeon more about ‘aggressive’ cancer, he said he is late stage. Any chemo would at best add months, not years, and would affect quality of life. That’s when I saw the realization on my dad’s face.
When we got back my 18 year old daughter asked for a family meeting to talk about the results. She is so smart. I explained it, and having all of us hear the same thing (also my mom didn’t remember what he said) allowed us to finally have the same information.
My daughter and I had 4 hours in the car to talk and cry. Tomorrow I take her to university, and she was so heartbroken because her grandpa will never see her graduate.
now we wait for the cancer centre appointment to talk about chemo and radiation options. It sounds like radiation is definitely a priority as it could help alleviate some of the back pain which is likely due to pathological fracture of his vertebrae.
@Mdhc I'm so sorry about the emotionallly exhausting day you had today and tbe news you received. Thank you for sharing it here. I was chatting with another member earlier today whose dad didn't get great news either. We were discussing possibilities, such as a clinical trial her dad may qualify for, or perhaps getting a second opinion. Im no doctor and dont know much about this type of cancer….but I can speak about examples that are close to home for me. My fiance had stage 4 esophgeal cancer . The first surgeon he met with wrote him off and deemed his situation inoperable . We found a new surgeon who got the cancer out, and he was cancer free for a while. He might have gone on to live a good life if other circumstances hadn't factored in. Nothing to do with the cancer. . And now there is my uncle. He has cancer in every part of his body. Doctors didn't think he'd make it past a year. He is in a clinical trial and is still here 4 years later. I know every situation is different ….but other options may still exist for your dad. Ask the oncologist about clinical trials he might be aware of. if you don't feel satisfied with the options that were presented today, you have every right to seek second and third opinions. Im glad you and your daughter are leaning on each other for support. Keep reaching out here. You will find hope , support and inspiration.
I am sorry to learn there was no further treatment offered by the surgeon. As @Brighty suggested clinical trials are something that may be considered. Clinical trials are treatments not yet deemed conventional treatments as they are still in the testing phase. Something to look into and discuss with your father. Patients need to qualify for participation in the trials. Here is some information from the Canadian Cancer Society: https://cancer.ca/en/cancer-information/resources/publications/clinical-trials
I am glad to hear your daughter broke the ice in suggesting a family meeting, and that now you are all on the same page with information. Some comfort can be taken knowing that radiation can reduce the pain and improve the quality of life for your father.
When you are ready, https://cancer.ca/en/cancer-information/resources/publications/advanced-cancer this pamphlet talks about many facets of advanced cancer, and suggests discussions and decisions that may be outstanding.
I wish you and your father well moving forward.
May I say that you have raised a very wise, and apparently strong young woman. I know that both your hearts are aching right now.
Now that you have the information, you can start to plan. I think I may already have referred you to the community services locator (csl.cancer.ca) website to look for supports in your parent’s town. You might also consider talking to your HR department at work to see what is available to you with regard to caregiving / compassionate leave for when the time comes that your parents need you there.
Again, this community is here for you to support you through this next challenge.