Dear Survivors, I hope you all are doing well.
Most cancer support groups are pretty general, are there any that are more structured by cancer type, treatment, location, and also connected to clinics or caregivers?
Hi all! I'm building an app to help provide support to people caring for loved ones with cancer. So often the focus (rightly) should be on patients, but often caregivers are left unsupported, confused and drained. Would love to try it and hear your feedback, and if you like it, please share with others.
This is going to be a long one I'm sure, and I'll try to update it as much as I can. Thank you for any and all support that muddles through this time together with me.
I am a 23F and I have had both chronic pain and complete lack of mobility in one of my legs for around 10 years now. For my physical and mental well-being I am choosing to amputate and leg go of this burden of 10 years. I am not looking for alternative solutions or PT suggestions; I am just looking for resources I can contact and/or support in navigating the insurance, amputation, and prosthetic process.
I had Osteosarcoma which I'm sure all of you can imagine at that age was not very easy. In the end, I had a whole bunch of chemo, a bunch of surgeries, it wasn't removed fully from my leg during the initial surgery so they had to go back in just for it then show up in my lungs in 3 places very close to my heart.
At the end of it all, I had my knee and most all of my femur replaced. I didn't have family support through this and have continued on without it. It is really in the end, just me, my partner, and my goal to be able to walk through the grass, down stairs, and ride roller coasters after all these years.
I am located in Indianapolis IN and I have tried my best to research as much as I can on my own. My mind is set on what I want to do which is a secondary amputation... I just don't know the proper roads to take.
THE PLAN/NOTES
-I am currently working through getting my insurance back due to them sending the redetermination letter to the wrong address. I work as an RBT (which I love but is difficult due to my pain and limitations. I've just never been a "sit down type" I suppose) so my hours are exactly the same as any FSSA departments so trying to work through this quickly isn't super feasible sadly. I just want to line up what I can for now. But I did have MHS HIP Plus I believe the name is for my insurance previous to it being canceled. So, I'm going to base my decisions based off of that insurance in particular.
1.) From my understating, I need a Primary Medical Provider to refer me to a specialist
2.) I believe the specialist I need would need a "complex orthopedic oncology follow-up". In specific, I am looking to try to get in contact with Dr. Wurtz with IU Health Orthopedics Oncology. I hear that he is very compassionate and understanding which is truly what I need. A refresh so to say with someone that will listen to my story and dreams.
3.) I know I will most likely need some type of mental health screening with a psychiatrist to make sure I am competent to make this decision and know the consequences.
4.) I know that I will most likely have to contact some prosthetic advocate to help with muddling through insurance.
5.) I heard briefly that IU Health offers something called "charity case" which could help cover additional costs for a high-functioning prosthetic, which is what I am looking to get.
6.) Does anyone have any experience requesting old pediatric records from Riley/IU Health? I just want to make sure the Dr. Wurtz would have a full picture of the initial limb salvage process.
7.) I was informed there's a bill in the Indiana Senate right now, if I'm not mistaken, that is called SB 0072 (so every body can move) which would basically require insurances to cover these prosthetics so I can go on a jog or go to the beach. If there's anyone that has used this/knows about it, please let me know!
8.) As an RBT, my job is definitely very physically demanding with me needing to be able to pivot, move quickly for safety, and keep up with my kiddos. Currently for me, requesting a high-functioning prosthetic is a a professional necessity.
-I'm not in the best financial situation by any means so I am really looking for some heavy insurance support because I'm sure this option will not be easy... at all lol.
Additionally, if there's any amputees that are RBT's, please let me know. What's it like? Does it make the job even cooler especially for the kiddos? With my clinic I have precautions in place currently that makes my job a lot easier/safe to perform but I am just curious as to how it would play out post-surgery. I know that I will be more functional than I am now which I am excited about, I just was curious. Thanks!
I was recently reminded of the taste of port flushes (iykyk) which literally made me want to vom, but for me the hardest part was actually the survival part.
The ‘congrats you’re cancer free - see ya later’ part.
The ‘omg congrats you’re cancer free now you can get back to normal’ part.
The ‘you should be so grateful you get a second chance at life’ part.
I could have screamed at the absolute top of my lungs but I was afraid that if I did that I’d burst a blood vessel and have to go back to the hospital and they’d find more cancer.
Cancer may be gone but it never goes away.
What about you? What was the hardest part about having cancer for you?
A few years ago my dad was in and out of the hospital with several surgeries, he had testicular cancer but thankfully got it removed fairly easily. He was a very overweight man and that likely contributed to a lot of his health problems, after his cancer scare and a blunt talk with his doctor he began losing weight. He dropped 224+ pounds in 5 years, he has an instagram dedicated for his weight loss journey, and he wants others to see that it is possible to change your lifestyle. Please give him a follow and show him some love!
https://www.instagram.com/mikerunsitoff?igsh=b2YycDIyOHZpcmJ0
This is my first post to this sub. I’m hoping to find support here for my medical anxiety. I’m a 16 year survivor of stage 4 Hodgkins. I was pregnant while diagnosed, and my 16 yo daughter is thriving, along with my 17 yo son.
I’m grateful to be here, and I know I should be taking better care of myself, but I am really bad about avoiding every type of doctor’s appointment and medical screening because I’m scared that I’ll be diagnosed with something. I feel ashamed that I haven’t taken better care of myself, and guilty too. My husband has been firmly reminding me that I need to get myself a physical. Last time I had a physical I skipped all the bloodwork, the colonoscopy, etc. the only thing I did was my mammogram. And now I’m in my late 40s. I know I need to do it, but when I think about calling and making the appointments my anxiety spikes and I just can’t do it.
It doesn’t help when my husband and other family members say, “You know, with your history you really should…” because yes. I do know. And that’s the thing that terrifies me. I’m afraid that I will have diabetes, heart disease, another type of cancer, etc. I’m afraid of all these tests, procedures, the potential cost (I’m in the US) and everything related to all of it.
Does anyone else experience this?
Can anyone please share some kind words of encouragement and support?
I have had years of therapy, but I’ve been out of it for a while. Thinking of going back temporarily just to have a supportive coach to help me through the anxiety of the physical and exams.
What has helped you?
Well friends it's been 20 years since I My BMT for peripheral t-cell lymphoma, I went into remission November of 2006. It was a hard journey, but because of where I'm at today I'm very grateful. Been married three times because of the cancer treatment., I was unable to have kids with my first two wives, a blessing in my eyes. My third wife and I did in vitro just under 6 years ago. So grateful to have my daughter. She wouldn't be here if it wasn't for the fact that I had to beat cancer.
So glad to be alive and have a small wonderful family!
Hi everyone,
Around two years ago, I was diagnosed with stomach cancer (signet ring cell), and I had my stomach removed.
Since then, I’ve been trying to adapt to this new way of living. The biggest challenges for me have been eating, maintaining weight, and managing energy levels throughout the day.
Some days are better than others, but it’s definitely been a process of learning and adjusting step by step.
I wanted to ask if anyone here has gone through something similar, especially after a total gastrectomy. How did you adapt over time? Any tips when it comes to nutrition, routines, or daily life?
I’d really appreciate hearing your experiences.
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A while back I was going through my camera roll, when I found out that my childhood videos still had their original date visible at the top. That's when I saw a video of me, post-surgery, on March 27th 2009. I was sitting on the countertop in our kitchen with a bottle of 7up, playing while a bandage covers my right eye. That video was recorded by my khala (aunt), 2 days after i had to get my right eye removed due to a form of eye cancer, known as "Retinoblastoma".
Seeing that date, "2009" made me realize how far i've come, both in terms of actual growth and also in terms of my relationship with the idea of living with only one functional eye. As a kid, i used to despise having to use a prosthetic eye, as it used to be very frustrating for me. So for the greater part of my childhood, i would refuse to wear the prosthetic and instead i would cover the right side of my face with my hair. Whenever someone would ask me about my eye, younger me would get upset over it but over the years, alhumdulilah i've realized how blessed i am and how merciful Allah has been to me.
Writing has always been an outlet for me. So i ended up joining instagram in 2019 to write about my eye in hopes of feeling better about it, wo alag baat hai that it wasnt until mid 2025 that i finally opened up about my journey as a cancer survivor. Initially it was tough to open up after being so closed off about this topic for years, but alhumdulilah i got a LOT of support from all my friends and family. I even got in contact with a few other cancer survivors through reddit.
Furthermore, i participated in in a project called, "The Fight We Never Asked For". Taking part in something like that was personally a huge step for me in being confident with myself and the response to that post made me realize how supportive the people around me are. When i see that March 27th wali video, i never imagined i would have the ability to share my story like this. Im truly grateful to have such amazing people around me, and although i still have a long journey ahead, im proud of how far i've come.
Alhumdulilah<3
