Everything I try to eat tastes like shit dipped in burnt transmission fluid. Textures trigger my gag reflex. My mouth and throat dry out when I sleep.
Does anyone have a clue how long I can expect this to go on?
I’ve lost 30 lb.s over the last month because I can’t stand to eat.
I asked the docs and I get estimates from a couple of months, to a year or more!

Hi,

So in summer I hard a tumour in my leg that grew over a week and started pressing on my nerves causing pain and numbness. I had it removed and a month later, when histopathology results came, they said they suspected a very rare cancer but because the tumour was fragmented, they couldn’t tell exactly what type (difference was non malignant vs very malignant so not a small difference).

Because it was uncertain, my family decided it’s not cancer and kept telling me to think about it as not cancer and that the way I approach it will determine the result, which tbh felt like gaslighting as I felt I not only had to face the potential very dangerous diagnosis but also defend it from my family.

I moved countries for job (which I lost as soon as my boss learned I’ll need another surgery and that I have a cancer).

Got the surgery three weeks ago, and today when I went to have the stitches removed, they said the second histopathology showed clean margins and no cancerous cells left. So that means I’m cancer free!

But somehow I don’t feel happy. Maybe I’m too exhausted from everything I had to go through mostly on my own. But maybe I cannot feel joy because I was hoping I’ll have answers at last. And now since I don’t have it “on paper”, my family went back to this narrative that therefore it wasn’t cancer and I should assume this position too since it’s “all about attitude”.

I feel like there’s no room for actual reality of this massive uncertainty that I now have to live with. I still will have to do CT scan every 6 months and local check every 3 months for the next 6 years. And do I have to do it while defending all the time that what I experienced was legitimate? I’m just so tired… relieved, but so so tired.

Can anyone relate?

Just my personal experience. I had more than twenty panels but this is where Reddit cuts it off. About 15 minutes after I woke up the nurse was pressuring me to leave.

Hi, I am new here. I am a 37 year old female, living in Belgium. I've read a bit on reddit and saw alot of people on here. I wondered if anybody here had been diagnosed a second time with a pleiomorphic adenoma on the parotid gland?

I've had a first surgery about 7 years ago (in UZ Gent) to remove a 6cmx8cm tumor. (I was 30 at the time) My symptoms that led to discovering it were during winter, troat infection upon troat infection. First I thought it was due to the cold and usual winter diseases. It was not.

I got surgery to get it all out. My surgeon back then told me he had to cut large. My facial nerve had to be bent to the side so I ended up with partial facial paralysis (right side). Due to my young age he told me chances were high I would recover. And I did! Except for some numbness near my ear and some rare occuring quick pain when drinking citrus juice or eating some stuff my wound disagrees with, but that was nothing compared to the relief of having it out, being confirmed it was benign and leaving all that behind me... till now.

I got recently diagnosed, after a checkup scan, with a new pleiomorphic adenoma on my parotid gland. This time it measures less than 1cmx1cm for now. But is located against my facial nerve and artery... I've had an echo and normally it was meant I would've a punction but it was too risky so it didn't happen. Due to the bad location and small size. Now the surgeon I saw, in UZ Gent, was not the same as my first one. Unfortunately for me, my first surgeon retired and the new one, well... told me the risks of leaving it in and taking it out. The surgery will be more difficult this time he said, cause they will need to cut into the healed skin who 'melted' together. There will be higher risk to damage the facial nerve and having facial paralysis again (and if so, higher risk of not recovering as well as the first time). I don't want to keep it in for too long, leaving the chance for the cells to get cancerous, but I am scared of facial paralysis who won't recover and more so, of reccurent tumors for the rest of my life. Each surgery increases the risk of seeding in more tumor cells who will develop into new tumor more rapidly between each surgery. Radiotherapy is not an option because of my age and the risk is too high to develop cancer or other anomalies later on in life caise of the radiation.

So... what do I do now?

The surgeon did not give his opinion on the matter. Just exposed some of the risks of both approaches (waiting and watching or surgery) but still vague on what my best option is. I will ask for a second opinion in Anderlecht (Jules Bordet, my doctor made that appointment after she heard the surgeon did not give his thought on the matter and left it up to me to figure out what next/when) , and I will probably ask for a third opinion in UZ Leuven later on. Now I'd like to gather some info on real people having gone through that. If you did or know someone who has been through the same diagnosis, a recurrent pleiomorphic adenoma on the parotid gland, I would appreciate knowing the gender, age/year of the first discovery/surgery and the next one(s), where it was located (same as me or higher up), if there was a punction each time, how the treatment was (or what was adviced to do or not do), how surgeries went... I need to gather info from peoples experiences cause I found almost nothing about recurrent pleiomorphoc adenoma. And not knowing is worse for me than knowing all scenarios and be mentally prepared for what might be coming and what could be options. I've also read about protontherapy. I don't know if that will be an option for me, but did any of you have that? If so, tell me about it please.

Thank you for reading this far! And thank you to be understanding, English is my third language 😅 I didn't mean to hurt your eyes with my faults. I tried my best! 🙃

I have Hodgkin’s lymphoma and just had my second session of cycle two (of six, I started treatment at the end of August had had some delays). My hair is really thick and it has been falling out in strands but it’s fairly slow going. Based on your experience with ABVD, is it likely to pick up and get worse? Just trying to mentally prepare myself for it emotionally.

My mother was diagnosed with advanced adenocarcinoma 6 months back. 4 cycles of chemo went smoothly with some discomfort. Both sessions of 5th cycle were so painful that we requested doctor for pet ct first before moving on to other cycles. Pet ct date is after a month. My mother meanwhile is in so much pain that she never experienced before. Doctor still deny to go any medicine other than paracetamol. I don't know what is happening?? Did we make a mistake by postponing chemo sessions? Any experience, please share.

Hey folks, my NSGCT has relapsed four months after high dose chemotherapy / stem cell transplant. Curious if anyone in here has experienced this and which treatment you did after the recurrence. My detailed history is in my other posts. Thanks all!

I’m 21 a year old guy and I was just diagnosed with Stage One Primary Mediastinal B-Cell Lymphoma. I’m starting chemotherapy very soon after I visit a fertility specialist.

Do you guys have any advice for getting through chemo-therapy?

Hi guys,

I’m F23 and I had cancer (Hodgkin’s Lymphoma) at 22 years old where i received chemotherapy and radiotherapy and had a surgery and was announced to be in complete remission at my pet scan months later.

It’s been 6 months since I have been in remission and I have not been dating since because I just haven’t wanted to yet but I just cant stop thinking about the fact that when I do start dating I will not find someone that will accept that I’ve had cancer. Or when is the right time to tell someone what I’ve been through

Any advice or thoughts would be appreciated thank youu

Update: thank you everyone for your advice

Hi

So I was jsut diagnosed and still waiting on pathology results to know stage snd type which has been hell of a wait. Ive slowly been telling family and few friends but I feel im telling them in a horrible way. Im trying to deliver it a gentle as I can but I feel like theres no matter how I deliver the news theres nk good way to say it. Im also not sure if I should even be sharing when im still processing it myself. Like still doesn't even feel real to me.. and im genuinely heartbroken I had jsur started college not even a month in. And im so stressed about my academics and all the things I ahd planned.

Could I get advice on how to cope or tell people in a better way? I reslly try to tell them in person or over the phone but s lot of people are asking me to "just text me(them" which i dont know ...

I dont know what to do in general

Forgot to share this here in case there happens to be anyone else going through the same or a similar thing. There is hope. 💗

Where is my tribe? It looks as though EVERYONE goes along with doctors' orders for surgery, chemo, radiation, and whatever else they can come up with, even when the diagnosis is terminal. They suffer terrible side effects, often losing all quality of life, and then die anyway. I'm choosing, for myriad reasons, to accept my diagnosis and "let nature take its course." Is there ANYONE out there with the same mindset? I don't even hold out hope for anything like a support group of like-minded people (especially in the breast cancer world), but I do worry about being put on the shelf by the medical profession for not playing along and later missing out on any palliative or pain-relief help that I may need at the end. Am I just the one crazy outlier?

Note: it's generally assumed that this means I am pursuing, instead, homeopathic remedies, but I'm not. I'm simply prepared to accept it.

completely symptomless stage 4 terminal esophagal cancer. i got diagnosed after it spread to my brain and the tumours started giving me vertigo and balance issues.

i was terminal for months without even knowing it. docs were clueless. i was clueless. literally no symptoms.

15 months of hard treatments and 3 brain surgeries later, still terminal, i have weeks left.

im 43 years old

i never had a chance from the start

this isnt fair

Got diagnosed with bowel cancer 4 days ago. Waiting for scan results, to see what stage I’m at. It’s a torturous wait. What have other people done to take their mind off it?

Thought I was going to get some feedback this morning. Turns out, they need to be reviewed by a specialist team that can’t do it till Wednesday. Two more days of torture.

Doing chemo for colon cancer right now, but thats not why I'm feeling lonely. If I'm honest, anxiety, depression and a general avoidant type of personality slowly made me more and more introverted. I was never a social butterfly, but I had friends when I was younger. Now, in middle age, I am fortunate to have a good marriage, but I no longer have any friends. Coworkers I am "friendly" with, but not friends. People I used to be friends with, and sort of think of as friends, but we don't talk anymore. I'm bored and lonely and cancer treatment and lots of thinking time has magnified this. Are any of you in a similar situation? Anyone reversed or prevented loneliness?

I'm 57 now, from the UK, and this has been on my mind for a while.

Prostate cancer runs in my family, but it wasn't a routine check that found mine. I had blood in my stool twice in one week, went to my GP, had a PSA test and things moved quickly from there.

Gleason 3+4. I went with brachytherapy. I'm not going to pretend recovery was easy. Painful urination, painful sex, medication to manage it, and ten years on I'd still say I'm not fully back to where I was.

The thing that stays with me is this. I only found out active surveillance was an option after my treatment had already begun. I'm not saying it would have been right for me, that's a conversation for a specialist. But I'd have liked to know it was on the table before I made the decision.

So I'm genuinely curious about other people's experience.

Were you told about active surveillance when you were diagnosed, or did you find out later?

If you went on surveillance, how did you find living with the monitoring? Did it ease your mind or add to the worry?

If you had treatment, what's the one thing you wish someone had told you beforehand?

And for partners and family, what helped you most in those first few weeks?

Not selling anything here, just want to hear how it went for others. If this post helps one person ask a better question at their next appointment, that's enough for me.

It was hard, but I did it. I’m finally cancer-free 🥲🥳❤️

I don’t know if this post belongs here, but I just have to share it.

I’m so happy to have beaten cancer 🥲❤️

When I was 28, an MRI diagnosed a tumor. The tumor markers were negative, so we thought it was benign. Two months later, a PET-CT scan revealed a malignant tumor, and the biopsy confirmed Hodgkin’s lymphoma. Hodgkin’s lymphoma is a relatively common form of cancer and, fortunately, is very treatable. Still, the treatment was hell. The chemotherapy was so exhausting—it not only destroyed the cancer but also severely weakened my body—and the radiation therapy wasn’t easy either.

But yesterday, after a PET-CT scan, I got the results: I’m cancer-free. 🥲

I’m so incredibly happy. I’m so proud that I stuck with it through it all, and I’m looking toward the future with optimism.

I admire everyone who’s currently battling cancer, and I want to tell you: “You’re a hero—don’t give up.” To everyone who’s currently battling cancer, don’t forget one thing: You’re not alone. ❤️

Hi all-
As we know, exercise can help play a critical part in response to treatment and overall health.

I have been consistent in gym with my stage 4 bone Mets over last 5-6 months (constant gym goer for years) but reaching a tough window right now until radiation gets done.

My question- how concerned should I be about the
Mental and physical impacts of skipping gym for 3 weeks and not being so active? Some days I am bed ridden from pain but things seem better with right pain management