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Hi
Loocha
1 Posts

My Dad, 69, was diagnosed with lung cancer in the Winter of 2021. He had previously been diagnosed with COPD many years ago, which I think I've now come to realize was a misdiagnosis and was actually the start of his cancer.

In the past week, his oncologist advised him we're in stage 4 of his mucinous adenocarcinoma and I'm in deep despair.

I'm a mother of 2 little guys who love their Papa so much, and I think this is what hurts my heart the most. I too lost my grandfather at an early age.

So… Hi. Sorry to meet you under these circumstances. But I trust I'm in good hands here with this community of people who “get” it. ❤

4 Replies
Whitelilies
1901 Posts

@Loocha Hello and welcome from ON! I am sorry to hear about your Father…..it is very difficult, on the entire family…especially your young sons. Please know, you have found a caring community….we do understand….we share…we listen…we support.

I will include a link below (Care Giving)….please read through…..of others' care giving experiences….and reach out/"tag" anyone, if you wish/ask a question, etc…..just type “@”screen name (no space after @) and a few names will drop down; select name you wish; turns to blue; this is OK; they will receive your message.

Is your father at home now? Can you bring your sons for mini visits? Perhaps they can draw, colour, paint special pictures, to give him? You can frame them too….

Please meet @Cynthia Mac (also from ONT)….Thank you so much, if you could share your care giving experiences, here, to support our new member……giving care, to her father……much appreciation

Loocha…we are here, to support you…and your Father.

Welcome Again

Whitelilies

#caregiving

Cynthia Mac
3575 Posts

Hi, @Loocha , my Dad had both COPD and lung cancer, too, but he had his COPD for many years before he got cancer, and, with the type of cancer he had, there was no way his COPD was a misdiagnosis. Dad had pleomorphic adenocarcinoma, which is a rare and very aggressive cancer, diagnosed in only about .01 to .04 cases of non-small cell lung cancer. If you really need to know this, you could ask your dad’s oncologists how long they figure his situation has been “brewing,” but lung cancer can be sneaky, and often isn’t caught until stage 4.

My dad was diagnosed in late 2017, and his cancer spread in the summer of 2019. You said that this past week the oncologist said he is stage 4 - so it sounds as though your dad’s cancer has recently spread, too, if I read your post correctly.

I don’t know what your Dad’s prognosis is, or what they can do for him. When his cancer spread, my Dad qualified for immunotherapy, and I know there are targeted therapies today, too. We have people here on the site who have been living with stage 4 lung cancer for several years: @Kuching and @WestCoastSailor. Every case of cancer is different, but while your dad’s news is devastating, there may still be some hope.

@Whitelilies’ suggestion to visit with your dad when you can and build those memories with him and your kids is great, and I hope you’ll be able to do that.

If there’s any help I can be - if you have questions about caregiving or organizing things for him, let me know.

@Loocha

Welcome to our merry little band of lung cancer patients. Not the band you wanted to join I'm sure. Nevertheless here you are. Stage 4 progression can be pretty tough and with COPD to complicate it, tougher. Mucinous adenocarcinoma was a new term to me and I'm glad I did a bit of reading before I jumped in with comments about what I assumed it meant. Turns out it is pretty rare - not that that is any great comfort but what I've read says treatable. While that isn't curable, it does sound like there is some time and quality of life left.

Managing serious illness is challenging. Getting a clear picture of what the road ahead looks like can be helpful. While some like just “following their noses” my experience is that those who “hope for the best and plan for the rest” get the most out of that remaining time. I suggest checking out the Waiting Room Revolution podcast, see my review and links to the podcast over here: https://cancerconnection.ca/discussions/viewtopic/68/69232

Some tough conversations are in order. Sorting out what your father wants these final days to look like is important. My reaction when I got the “Advanced Care” packet was denial. I threw it across the room and said “I'm not ready for this.” But eventually I picked it up and got my affairs sorted out. My health care proxy knows what I want and what I don't want should I become incapable of making these decisions. LOL my kids want me to write my own eulogy - not sure that is going to happen. By the way I'm a few years past my “Best before date” so there is hope here with treatment. Your role will be to listen and make sure you understand.

Sorting out what you want is important too. My mother died of breast cancer when I was 17 so I have a wee bit of a sense of what the loss feels like. I recently received a pack of letters that she had written to my grandmother about her new life in Canada. What an unexpected treasure! There may be things that you want. My kids asked me to sit down with a bunch of photos and talk about my childhood with them, for instance. They recorded it and have a digitized version of the photos.

For me one of the most important things that happens is when they pick up the phone and tell me how they are doing. It doesn't have to all be good though I don't rush to give them advice when they tell me about difficult challenges. We talk about the camping/fishing they have done and the books we are reading and the movies we have seen. All that helps me feel like I'm part of their lives.

If you have more questions let us know and we'll see what we can do to find someone to answer them.

Angus

Sherri23
13 Posts

Hi @Loocha

Sadly it appears that we share a similar story. My 69 year old dad was also just recently diagnosed with Mucinous adenocarcinoma but his doctors are unable to stage it at the moment- though they highly suspect that it has spread to his other lung and around his lung.

I also have children who call my dad Papa. Three young kids- but I live on the other side of the coast in the US. My kids daily FaceTime time chats with their Papa are getting harder and harder for him I can tell.

I feel like this type of cancer is not as common so feel very lost but wanted to reach out to you anyways.

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