I was diagnosed last month and only recently had my lobectomy. My surgeon was amazing but I find that I have no idea about anything. I don't want to be one of those people that constantly call the medical team to pester them with questions.
At this point its adenocarcinoma, stage 1 lung cancer. All I know is that the lobe that was taken will be sliced thinly and tested for spread in the lymph nodes. I have no idea how long this might take, has anyone got a rough timeline?
Also, I don't know what the timeline are like. How soon should I be expected to try and walk for 30 minutes, when should I stop celebrating being able to brush my teeth? I'm only in my early 30s and the fact that I haven't been able to do a lot that I used to is really worrying me.
I was just diagnosed with the same thing yesterday. Have to wait for a Cancer dr. appt and another CT scan and I have not been contacted yet - hopefully tomorrow. I am terrified. Have no idea on the stage of this - was fine before all this started. I don't want to die. I don't want to leave my family. You said you are alone. How have you managed to get thru this alone? How painful is the surgery - that's probably what I'll end up with.
I'm 6 months post and doing great.
The doctors I saw were my lung specialist and the thoracic surgeon.
Here's what happened and I hope this helps relieve the stress.
2. Surgeon discussion, I'm very statistics driven so I asked for % and stuff which they were happy to provide. In my case there was a 0.5% of death. Chances of it returning(without known rootcause) , etc.
My surgeon saw me post surgery after I was discharged but it was my specialist that gave me the info and root cause. If you do the CT and they find cancer elsewhere, they may cancel the surgery and run you through radio. At least that's what they said would happen in my case. Once my root cause was identified from the slices, I was given more details of it returning and where they will potentially appear.
4. Recovery was not fun but now it feels like a distant memory. If you have family or someone who is taking care of you, I would suggest laying out clear expectations like meal preferences, etc but your surgeon will tell you to ensure a high protein intake.
5. Be kind to yourself and sleep when you are tired. While in doing fine now 6 months later, I'm still in recovery. Your body will feel different to what you are used to but you need to learn the new you.
6. Be aware of your pulse, especially if you are at a high risk of a stroke. If you sense anything too different with yourself, the surgeon will happily hear you out.
7. Major surgeries come with... "gifts that keep giving". My acne is a lot better now but I've never had acne needle so prepare for hormonal changes.
8. The cold sucks and sometimes I get twinges of pain where the surgery was.
9. My April was clear, waiting on October to tell me if it has returned or if I need to change off to 12 months routine check or whatever the next course is.
Hope this helps! Hang tight, it'll seem like a lot but it'll be over before you know it.
Thank you for responding. I am waiting on an appointment yet. I need answers. The shock of the diagnosis is still with me. I've never had such shaking hands and going from hot to cold. My prayers for you 🙏
Hey, hang in there. If you need to speak to someone and let it all out DM me and I'll share my number so you have someone with you all the way.
Think of it as something needed so you can spend longer with your loved ones ♥
Well, it's Wed morning. Hope I get the call for my appt today. Ever since I was told there were 2 cancer cells in my lung fluid, my hands have not stopped shaking. I have always had very steady hands. And I'm not really cold but keep getting chills. Is this part of shock yet - nerves gone bad? Did you get this way?
Hi Debbie, just been reading yours posts. So sorry you’re having to wait for an appointment. I had non Hodgkin’s lymphoma so different to your cancer, but the physical reaction to the diagnosis was a bit like you. I remember the trembling starting in my feet and working it’s way up through my body. It was only after I had big cry that it would go away. Totally out of my control. Once I started treatment I stopped having those panic attacks. Just ring the centre if you don’t hear from them soon. That would just be adding to your stress. It’s normal to be scared so you just need to get your appointment asap. Love and prayers to you. 🙏💕 Linda G
Got appt for CT scan but have to wait till Aug 10th. The waiting is awful. That's the soonest they can get me in. Isn't time waiting against me? Trying to locate another location that might be able to take me sooner. You would think they would have some open spots for emergencies like this but I guess I'm just a number to them. Still no call from the cancer center and it's 10 am. (Wed 7/27)
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