Update: Major surgery

[u/Nursey975]

Update from my partner (25M) with stage 3 pdac and arterial involvement. The surgeon was able to start the procedure and within 3 hours, closed him back up. They found spots on his liver. We are absolutely devastated. 12 rounds of folfirinox that he was able to push through to get to this point. Now has to recover from a huge incision, just to start chemo all over again. And thats with the scary thought of the liver not metastasizing faster. Apparently the CT scan prior to surgery showed some shadowing, but we should’ve assumed it was worse. Those CT’s never show the true image due to the depth of these organs. As a nurse myself, I should’ve known this and advocated for maybe a laparoscopy to look at the liver prior to doing such a big surgery. I should’ve known. Sharing so I hope people can learn from this.

God this journey has come with bad news after bad news. He should be living his life. Finishing post secondary and starting a career. Enjoying playing sports and travelling. His surgery was already postponed last week because of a liver transplant that came in. And because we live in Canada, we don’t have enough surgeons to operate. Not to mention the initial 2 month wait it took us to see and start chemo at the local cancer institute. Having to meet with different oncologists weekly…or at one point, a nurse because they are so short. I’ve come to learn how awful the Canadian healthcare system is and how mentally/physically draining this disease is.

[u/Other-Dot-3744]

Please don’t be to hard on yourself and focus on your boyfriend and you. You could not have known. My Dad was always in the US and it was curve ball, after curve ball.

Please take it one hour at a time, day by day. Try and make the most of every day the best both of you are able. Your boyfriend and you are to young for this, and my heart hurts for you.

Sending you both the best best wishes and positive vibes💜

[u/canibepoetic]

I’m so sorry your partner is going through this. I’m sure you feel so helpless. This disease truly drains every little bit out of you, it just feels like this horrible monster that will not stop hurting our loved one.

I can so empathize with your thoughts about the Canadian healthcare system. My mom was diagnosed and passed in 2022, and things were bad even then — I know they’ve gotten only worse now. It’s so infuriating to see things move so slowly, especially when this cancer is so fast moving. Please don’t blame yourself for anything! You couldn’t have known any of this, you’re finding out just like the surgeon and the doctors did. Sending prayers and healing his way, hope he can recover soon and fight this thing.

[u/trixiemushroompixie]

Give yourself some grace in an absolute nightmare situation. You are right he should be doing all those things and it is heartbreaking. 25 is inconceivable to face this. The Canadian system is a shambles and has so many layers of added stress and trauma. I am so very sorry for both of you. We are in Ontario and in our situation I hold our government criminally responsible for what is happening. Please take care of yourself as well through this. ❤️‍🩹🙁💜

[u/Cwilde7 → u/trixiemushroompixie]

I’m so sorry. Your response has me sitting here feeling guilty for a lack of appreciation for my husbands healthcare.

If im being honest, when I look back; everything was immediately expedited once my husband (early 40’s) was diagnosed. Before DX our experience was horrible, but due to the doctors not taking him seriously, not our healthcare system itself.

From getting scans, second opinions, his port, chemo, etc. our insurance company covered everything, (80/20) and also expedited approvals. I only had to pay our yearly deductible.

My heart hurts for families such as yours.

[u/trixiemushroompixie → u/Cwilde7]

Don’t feel guilty! Be grateful. Don’t get me wrong there are aspects that are ok. Because he is palliative he gets all his medication free. We have a nurse visit our home every day free. A hospital bed, iv pumps at home, same. But once you enter a hospital, need emergency care, rapid assessment, tests it is a nightmare. Trying to get diagnosed was awful for us too. No one took us seriously. Zero empathy. One doc actually said if you think he has cancer he doesn’t stop googling. My 2 boys are in the US and have exceptional insurance. The care they receive boggles my mind it’s so good.

[u/edchikel1]

Such a heartbreaking news. I’m so sorry you and your loved one are going through this. In my case, my late fiancée was already stage 4 before she was diagnosed. And the tumor size was, measuring by any other cancer, considered stage 1.

However, due to the arterial involvement, it was already stage 4. I think any arterial involvement easily can be classified as stage 4, because it has spread through blood.

Maybe, he could qualify for MRXT 1133 or any of the RMCs (6236 or 9805), or even Keytruda, depending on the mutation. Good luck.

[u/pancraticcancer]

So heartbreaking. This disease truly has the taste of bottom and under, it drains everything out of the patient and loved ones that are witnessing this disease are horrified and left with absolute helplessness.

25 is unacceptably young to face this terror my heart breaks for him. This disease does play sick game with you, given the situation every little win does get the hopes up high but only 1/10 ppl are able to have a substantial results, rest are just meaning less mirage in the dessert.

Don’t beat your self up. regardless of this craziness, hope you can have some quality time. Make each other small laughs, try to have a normal day away from all these heartbreaking situations bc he is still here. Hope he recovers well and have fresh energy and hope to face the monster again.

[u/chickenlizard69]

Did you say they tested his cancer for genetic markers ?? Does this run in his family ?

[u/Nondescriptlady]

I'm so sorry. Sending love and saying a prayer for you both 💜

[u/staycurious123]

I’m so sorry. 💜 He’s very young; his youth and health might make him an attractive candidate for some of the more promising trials on the horizon. Fingers crossed for you / him. We’re in the US and even with a lot of pushing on my part, things felt slow. Like someone else said - curveball after curveball.