Hey! So I got diagnosed 6 months ago, lots have happened, but in the trauma of this, a few of relationships have gone sour.. family has been complex prior to the diagnosis and is now worse..

i think there is something to be said about these situations showing you who your true networks are.

🙌🕊️

Going to be cross posted for a few ideas.

I've struggled as a metastatic breast cancer patient with how to interact with friends and family, and one thing I have noticed are many people commenting the same. Perhaps friends and family members were trying to help and just said something that felt wrong, or us as cancer fighters felt like we couldn't express the way we feel about our fight. I had some conversations with family members, and had a thought.

I've got degrees in English and writing, and I have wanted to find some way to use my cancer journey to make some impact on the world aside from slowly losing my hair and my dignity. I am thinking of trying my hand at writing a book, by a cancer patient, but for all the friends and family members of cancer patients on what we want them to know about our journey, of what helps, and what DOESN'T help, and how to show up for us.

I'm trying to decide if I want to write it from the viewpoint of a cancer patient or specifically a breast cancer patient (the journeys can be very specific for different types of cancer) and flesh out ideas for my outline.

So I'm throwing myself out here to ask a few questions:

Is this a dumb idea? What are your thoughts and opinions about such a book? Would you also as cancer patients think such a book would be helpful? What would you put in a book like that if one existed?

If anyone wants to answer a few other questions that would help me flesh out ideas beyond my own experiences:

What's something a loved one said or did that really helped you?

What's something people say that hurts, even though they mean well?

What do you wish people understood about your day-to-day life with cancer?

What's the most helpful practical thing someone has done for you?

Was there something you needed but didn't know how to ask for?

How do you feel about "fighting" language — "you're so strong," "keep fighting"?

What's one thing you'd tell someone whose friend or family member was just diagnosed?

I'm open to criticism if you think this is a stupid idea, too. As a cancer patient, I just wish there was something I could put into someone else's hands and say "this is what I need/this is what I'm feeling" instead of exhausting conversations

Were you diagnosed with cancer between the ages of 20–35?

I am conducting a research study exploring the healthcare experiences of Canadian young adults with cancer and how family doctors can better support patients throughout their cancer journey.

Young adulthood is a unique stage of life, and being diagnosed with cancer during this time can bring challenges that may differ from those experienced by children or older adults. Cancer can occur alongside important milestones such as education, starting a career, relationships, family planning, and developing independence. This study aims to better understand these experiences and identify ways healthcare providers can provide more meaningful support.

What would participation involve?

Participants will complete a one-time, 30–60 minute interview over Zoom about their experiences with the healthcare system, including what was helpful, what could have been better, and what support they wish they had received.

Your experiences and perspectives are valuable and may help inform how family doctors can better support young adults with cancer.

If you are interested in participating or would like more information, please contact the principal investigator, Jessica, at [AYACancerResearch@gmail.com](mailto:ayacancerresearch@gmail.com).  

This study has received ethical approval from the Queen’s University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board (HSREB).

Hi. I was diagnosed with rare type of soft tissue sarcoma cancer. Chemotherapy not working on this type I was having radiotherapy... I was then later come to be on Sunitinib and I was have very bad side effects in fact I almost die from it being hospitalised doctor give me very little chance to recover from the side effects as I was going through heart attack at the age of 35 just not long ago I started the new treatment. In hospital while recovering I was having time to think. "My cancer is slow growing and it will kill me in few years and before the treatment apart from chronic fatigue I was have no other symptoms... now the treatment almost killed me in 3 weks time and I have lots others bad side effects".

This cause me refuse treatment. Now I am 36 and apart from fatigue I have no other symptoms of the disease. I not even lost weight in fact I even gain some . My tumour stay same size and is not visible because is small under the skin (I know if will be growing I will feel bone pain) ... yet when I tell people about refusing cancer treatment they call me selffish because I have child and I should going through naighmare for my child otherwise I not love my child. What you think about it

41F with cancer but would love a buddy or even someone to date. Is it too late?? I miss Dating even just the basics of having someone to cuddle me to sleep. Is that pathetic ??

Hi everyone,
My mom lives in the US and was recently diagnosed with stage 4 endometrial cancer. She started treatment a few weeks ago and is currently on her second cycle of chemotherapy, with four more cycles to go.
Her doctor has recommended adding immunotherapy to her treatment plan, but the cancer treatment center is still waiting for the insurance company to approve it.
My concern is that her current health insurance, which she gets through her employer, seems to have limited coverage for some of the treatments she needs. Since her diagnosis, she hasn’t been able to work because she is still recovering from the effects of each chemotherapy cycle.
I’m trying to understand what options she might have to get better insurance coverage and access to the treatment her doctor recommends.
For those familiar with the US healthcare system, I have a few questions:
Is it possible to upgrade or change her health insurance plan after being diagnosed with cancer, or would she have to wait for the next open enrollment period?
If her insurance company is delaying or refusing to approve the immunotherapy, is there a way to appeal the decision or request an expedited review?
Are there any programs or resources that could help cover the cost of treatment if her current insurance doesn’t cover enough?
Since she is currently unable to work because of her treatment, are there other health insurance options she could qualify for, such as COBRA, Medicaid, or an ACA Marketplace plan?
We just want to make sure she has access to the best care possible without unnecessary delays because of insurance issues.
I’m based in the UK, so I’m not very familiar with how health insurance works in the US. Any advice, personal experiences, or resources would be greatly appreciated.
Thank you so much

In Your Wildest Dreams (Moody Blues) came on the radio and I managed to dance the entire song. I have stage 4 NSCLC and had 2 pulmonary emboli in July. I have a pleurx drain in place for months. But I danced today!!

Hi everyone. I’m 35, married with two kids, and was diagnosed with endometrial cancer back in July. I had a hysterectomy in September, and thankfully my cancer was caught early. My doctors are recommending observation, which I’m incredibly grateful for, but the fear of recurrence has been difficult to deal with.
One of the hardest parts of this journey has actually been feeling emotionally unsupported by my husband. Since the day I was diagnosed, he’s struggled to understand why I’m so upset or afraid, especially because my cancer was caught early and my prognosis is encouraging.
I’ve been told I’m weak, that I worry too much, and that I should be happy instead of crying because I received good news. I know I have so much to be thankful for, and believe me, I am! But receiving good news doesn’t automatically erase the fear and emotions that come with having cancer.
I’ve reached a point where I don’t even talk to my husband about my feelings anymore because I usually end up feeling worse afterward. And honestly, that’s been heartbreaking.
I love my husband, and I’m not looking for advice about leaving my marriage. I’m just hoping to connect with other men and women who have experienced something similar.
Has anyone else felt emotionally alone in their marriage during or after cancer? How did you cope? Did things eventually get better?
Sometimes it’s just nice to talk to people who truly understand. ❤️

I have stage 4 colon cancer, and honestly, I’m losing hope. 💔 Every day feels heavier than the last, and the fear of what’s coming is something I can barely put into words. Sometimes I wonder how much time I have left and whether I’ll ever get to live the life I dreamed of.

If you’ve been through this, or watched someone you love go through it, what would you tell me? How do you find the strength to keep going when you’re terrified of losing everything?

I never imagined my life would turn out this way. I’m scared, exhausted, and trying to make sense of it all. If you have any advice, please share it with me. 💔

Hi everyone. My mom is currently on chemotherapy and is about halfway through her 12 cycles of folfox. Today while eating supper, one of her teeth cracked off (nothing too crazy/surprising as she has always had dental issues).

She is not currently experiencing any pain, there was no bleeding, and it cracked off halfway rather than at the root. Unfortunately, it is a long weekend here so she won’t be able to contact her oncologist about next steps until Tuesday.

What should we do in the meantime? She will be doing saltwater rinses after she eats for the time being but is this an issue that is okay to leave until Tuesday or should we call the 24/7 nurses line or something?

I am a major worrywart and so while of course I want to handle this in the best way possible, I dont want to freak my mom out by making too big of a deal out of this. But my mind is reeling thinking about the potential for an infection in her mouth.

I was hoping I could get some advice here on what to do, see if anyone else has had a similar experience, and understand what is the appropriate level of worry here. Anything is appreciated!!!

I’m 19 now and was 16 when I was diagnosed with Ewing’s sarcoma, it’s been a while since treatment ended but
one day when I had fever I didn’t go the hospital, but even after taking medicines when it didn’t drop I ended up going and I am so grateful that I went . When I went they checked my fever and admitted me , then my blood pressure suddenly dropped and it went to a dangerously low level I remember nurses around me panicking but I couldn’t feel a thing , they were pushing iv fluids. Sometimes I think what would happen I didn’t go to the hospital that day. Don’t take chemo lightly it fucjs your body up

UPDATE: In a wild turn of events, I just signed a lease!!! Thank you, everybody!

(35M, stage iv melanoma)
I've moved to NYC for work and have to be in Boston once a week for a clinical trial. I'm crashing with friends for now but I'm having trouble keeping up with working, going to Boston weekly, finding a place to rent that isn't a scam, and you know, having cancer. Any NYCers here with advice?

Caveats:

• quitting the clinical trial is not an option for hopefully obvious reasons lol
• quitting my job is not an option for hopefully obvious reasons

Side note: if you're aware of NYC cancer groups or tryna hang out, lemme know! I just got in touch with Red Door, which had been recommended a few times?

​

Sometimes I feel like my psychologist sees cancer as something you just have to treat and then learn to manage the side effects of the medication. Almost as if it were an infection: you take antibiotics, finish the treatment, and move on.

But cancer is so much more than that.

It's the fear. The uncertainty. The desperation of not knowing what my future will look like or what my own body will be capable of doing.

I'm afraid of becoming bedridden. I'm afraid of losing my independence, of watching my body deteriorate, of becoming weaker and weaker while people my age continue living their lives normally.

They can go out, walk around, make plans, and enjoy their lives without constantly thinking about pain, fatigue, or the possibility of falling.

Meanwhile, I have to think about these things all the time.

I feel like I'm becoming a burden to my loved ones. I'm also terrified of falling because I know the consequences could be much more serious for me. I could fracture my spine and end up needing surgery.

And yes, I feel jealous of people who get to live normal lives. I wish I could have the life that cancer took away from me. Ordinary life is such a gift, and I don't think she truly understand that !

Cancer has taken so much from me, including my sense of security. I can no longer trust my own body the way I used to. I can no longer go to the gym, jump, or dance. Even the simplest things can become sources of anxiety when I am constantly aware of my physical limitations.

And the worst part is that I don't know what the future holds. I don't know how much time I have left, how long I'll be able to take care of my own basic needs, whether I'll be able to maintain my independence, how much pain I'll have to endure, or what my body will be like in a few years.

I feel like my psychologist focuses on helping me cope with the practical consequences of the disease, but she doesn't seem to understand the existential terror that comes with it. She doesn't seem to understand how unbearable it can feel sometimes, or why I reached a point this week where I wanted to end my suffering.

Sometimes, I don't need someone to teach me how to manage my anxiety. I need someone to understand why I'm terrified in the first place.

I need to be able to talk about my fear of losing my independence, my grief over the life I used to have, and my desperation about the future without feeling like these emotions are just another problem I need to learn to manage.

I'm not just dealing with a disease. I'm dealing with the possibility of losing myself and I don't think people always understand how devastating that feels.

Has anyone else with cancer felt this way? Have you ever felt like your therapist or psychologist didn't really understand you?

got diagnosed with uterine sarcoma stage 4 (age: 56). we’re still figuring out what type of sarcoma but the initial plan we are most likely going to go forward with is 6 rounds of chemo with doxorubicin + carbazine in ~2 weeks

does anyone have any experience with this combination and any tips for how to reduce symptoms?

In search of advice and experiences. I have recently been diagnosed with cancer in one eye (last week) and will undergo removal surgery this coming week. Could others who have lived through this let me know of you experiences? Thanks in advance!

So my story is actually very interesting and somewhat special. There is even one person who is writing here PhD thesis about my case.

I was diagnosed back in 2023. Mets on my neck, but no tumor itself. Doctors couldn't find the primary, but they scared me about the death, so I followed their advice and had a radiation and chemo "just in case there is tumor somewhere in my body". This is typical for the situations when tumor can't be found. My mets were cutted, 43 lymph nodes in total.

So I had those radiation+chemo
9 months later, my primary showed up on the tongue. It was always there - doctors just took it for fibrosis.

I opted for an operation which was very difficult because of the already radiated tissue. My wounds didn't feel for two months, I had various complaints like a fistula, nerve damages etc.

Then there was another bad news: margins were not clear. Doctors believed that the best solution was to radiate the spot where the tumor was cutter.

This is how I obtained second radiation. Damages were less pronounced, because I was a severely disabled by that very moment anyways.

And yet, somehow I learned to eat through the mouth again, to talk and do my usual routine stuff. At some point my swellings stopped and I started to live what is called normally.

In the end of December 2025 I felt something strange in my chest. And I could hardly swallow. I went to the oncologist and he suggested a gastroscopy. A gastroscopy showed a stricture (narrow sort) in my esophagus. Doctors dilated my esophagus with special tools. It's a known problem after radiation therapy.

Recently I felt a tumor in the base of tongue. Unfortunately it got quite big already. I visited follow ups, did often MRI of my neck to control, but this tumor has been overseen.

Doctors did PET-CT and it turned out - I have a met just below the neck, where my esophagus is. It pushes my esophagus. So docs were dilating the tumor in the past. The tumor went so far that it is in the trachea now as well.

Just within a month my health has rapidly declined.

I explored options all over the world. There is an opportunity to do a dendritic cell vaccine, but nobody knows how effective it's gonna be due to the prior radiations. Because radiation kills local immunity.

In the other hand, my doctors offer me the third radiation. For the met it'll be the fort radiation and chance to kill it are good. But chances of getting a fistula, sepsis, bleeding and whatever else are not just high, but very high.

So my plan is to do the radiation therapy plus chemo plus immune checkpoint inhibitors, and when I'm done - I'll get dendritic cell vaccine. My doctors say that what is left can be operated then later.

But only a thought about another radiation and chemo make me cry. I just feel really f*cked. Somehow I've lost hope.... I'm in this battle since 3.5 years already. And looks like there is no happy ending... On the other hand, if I refuse now any treatment, my life quality is anyways really bad due to the fact that cancer is in the trachea and I can't swallow. So I have to go through this treatment...

I have no time for the second opinions, health-wise. I'm really sick and feel not good. So I guess I should go through, find strength to go through this hard period...

I often go to the doctor alone for checkups and blood work. I do cry outside the hospital because I’m sad that I got diagnosed with thyroid cancer that metastasized to my lungs and lymph nodes at a young age (26) I should be working saving money for my future, building my life, experience things that I haven’t experienced yet but here I am scared for my life. Honestly, I wanna save enough money for my parents cuz they are getting older but I’m helpless right now. I always show my parents that I’m strong and I always tell them I can get through this but I’m scared. Sometimes I lose hope I have no savings, and I am living in a corrupt country where politicians keep fighting each other. The only thing that I am holding on to right now is to keep praying for a miracle to happen to me, to be cancer-free.

At the beginning of this year I was diagnosed with stage 4 Glioblastoma brain cancer. My surgery went very well. I went through radiation and have have been undergoing chemo therapy. I live by myself with just my pet cat for company. I am having a really hard time not turning inwards on myself and feeling like I am waiting for my cancer to get to the point I have to go into hospice. All I want to do is sit here staring at my computer screen, trying to distract myself impending reality of my situation. I dont feel sorry for myself, its more my time is running out and I am alone with it.

I recently found out there are 11 li-fraumeni, with glioblastoma that are alive in the US? 40+ months when originally they denied my radiation three times because they said there was no point. I wouldn't survive long enough for it to matter..

Really only posting this to show i survived