Is this community still active? I am moving out from Rageddit and would like to have a place to help, vent and exchange experiences here. BTW I based in Austria. Brain metastasis from kidney tumor. If anyone wants we can meet here from time to time. All the best. e.

This is our story

🎗️ We’re rallying support for a brave mom in her battle against stage 4 stomach and lung cancer. She’s a fighter, and with a 7-year-old daughter by her side, every moment counts. Your help can make a huge difference. Please consider donating or sharing her story: 💕 #Support #CancerFight #gofundmedonations

Last posts prior to this were about 8 months ago. I just wanted to check in and see how everyone is doing.

I'm [M,58] a year and a half post surgery, and so far clean. Cancer took my bladder and prostate.

Recovery started quickly, but I feel about 70% of where I was pre cancer. Mental outlook is good.

Sending out good vibrations to you all!

So thanks to my fun version of cancer, I had a total larynjectomy. My voice box was removed. Amongst all the other things I will never be able to do again, I can't speak on the phone.

I have been trying to find an app that lets me type words and it speaks them INTO THE PHONE to the person on the other end. However much I try, I can't seem to find the right words to make Google understand what I'm looking for. I don't need something that speaks typed words out loud to the person standing next to me. I don't need an app that reads texts to me. I need to communicate over the phone line to the person on the other side.

Can anyone here unlock the magic phrase that finds what I need? I am starting to suspect there's some law against it or something, which is why it's seemingly not a thing. I can't imagine mine is the only use case for such an app.

Right now my poor wife is the one who has to make all my doctor appointments, order all my drug refills, call the plumber, whatever. I'd love to be able to help with that again. Can you fine folks help me out?

Went in for a just in case colonoscopy/endoscopy for my lung NETs, my specialist just wanted to make sure but didn't expect there to be anything, just dotting the i's, is how she put it. Turns out I have a big old tumor in my stomach all the other tests missed, the blood tests, the PET scans, the specialised NET PET scan all missed. Apparently stomach tumors don't always show up on PT scans and my CT scans were only of my chest. So now yet again I sit and wait for official biopsy results. I hate the waiting.

As I'm hoping to see the community grow so we can offer advice and support to each other I thought I'd write a little about my cancer so maybe others will see and join in.

I have Neuroendocrine Tumors in my lungs, never smoked a day in my life, a fact I was so smug to my peers about as a teen that I sometimes wonder if I got lung cancer just from the sheer irony of it. I'm "lucky" in that Neuroendocrine Tumors (NETs) are usually very slow growing, and all the doctors like to tell me we caught it early, but it doesn't feel lucky. They removed my lower left lung lobe, telling me that they got it early, it hadn't spread and I would be all but cancer free. Only next scan I have 3 little micro tumors popping up that weren't there before.

Turns out I have a rare condition, so rare that there is actually no idea how many people actually have the condition, but estimates are around 200 in the USA, of those 95% are post menopausal women. Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia. It's a mouthful but basically for some reason, the neuroendocrine cells lining my bronchi, just woke up one day and started reproducing like crazy, something they stop doing before you're born. They reproduce so often and so fast they can throw off teeny tiny endocrine tumors, which means eventually your lungs get riddled with 10's of teeny tiny tumors that start growing and blocking your airways. Then for fun, rarely one of those tumors might just decide to be a small cell cancer, just to keep you on your toes.

There are a couple of treatment options, but I hit that wonderful catch 22 situation I'm sure others of you maybe have had with cancer treatment. We can't do anything until we're sure it's cancer (even though the 2 tumors they got from my left lung were definitely NETs), but it's not bad enough we will risk a biopsy to prove it's cancer yet. So you just have to wait. No one ever tells you how much of cancer treatment and follow up feels like hurry up and wait.

Anyway I hope we can build a community here, I know it takes time but I look forward to getting to know more people and hear about their journeys, either with cancer or supporting someone with cancer.

Hot take, I know. But it needs to be said before anything else.

I seem to be surviving so far. A little over two years from my diagnosis. Radiation, chemo, several surgeries, and now immunotherapy weekly. The cancer seems to be gone for now, but my body is wrecked from all the treatments.

Oh the irony.

But I'm still here. Hugs and hope to everyone else dealing with this bullshit. If you want to talk, @ me. <3

I was subbed to r/breastcancer but hope to see this community grow.

I was DX'd with breast cancer at the end of 2021 when I was 38. I had a basic course of treatment - lumpectomy followed by radiation. Afterward, it felt like no big deal and like it was all behind me... Until I was diagnosed with cancer in the other breast just one year later, at the end of 2022!

It no longer felt like a one time event and this time I removed all the offensive tissue via mastectomy. I had implant reconstruction and was fortunate to find surgeons who spared my nerves and left me with feeling in my reconstructed chest. Most women lose all sensation in that area afterwards. I'm also lucky to have had good results after having previously had radiation.

I'm three months post op and am getting on with my life. But I do my best to inform other women about sensation/nerve sparing mastectomies. Many women who have this procedure get their nerves cut, which not only causes them to be numb but can cause a lifetime of pain. Sensation sparing mastectomy is a "new" type of surgery that many surgeons will deny even exists.

That's my story! What's yours?

I'll start by posting here myself, hopefully more posts and interaction will draw more people jere so we can start to build a supportive community.

I'm in my late 20s diagnosed about a year ago with Hodgkins lymphoma. I did six cycles of abvd, midway scan looked great, end of treatment scan however, not so much. One tiny spot in my chest still lit up (deauville 5) so back to the hospital. Normal course of action would be more chemo followed by an auto stemcell transplant, however, as tge scan only showed evidence of cancer in one location my hematologist suggested trying radiation therapy first. I've currently finished 18 days of radiation and I'm awaiting another pet scan (next week) to see if the radiation put me into remission or if I'm going back into treatment for more chemo and an auto transplant.

I'd love to hear from other people, whether your situation is good or bad. Or if you just want to vent or post about (funny) situations at the hospital, almost anything goes.

I've personally found humor to be a great way to deal with everything.