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Long-Term Survivors

A Map Made of Scars and Truth at the Edge of the Noise
The Road Map No One Gave Us: A Survivor’s Guide to What Might Come Written by Joseph Perusic, with support from Whisperer A fusion of lived experience, brutal wisdom, and quiet clarity—for every survivor still walking without a map. 🛣️ Step One: Survival Isn’t the Finish Line—It’s the First Fork in the Road You’ll hear the…
Recognizing and Supporting Long-Term Childhood Cancer Survivors
Objective For decades, childhood cancer survivors have endured the lasting effects of their treatment—medical complications, physical limitations, and emotional scars that do not fade when the cancer does. Yet, the medical and advocacy communities continue to treat survivorship as an afterthought, failing to provide the…
Childhood Cancer Survivor 60 yr /D at age 3 (starting new)
Hello my fellow survivor, I'm trying to start something new- SCCC Senior Citzens of childhood Cancer.
5-year ACC parotid survivor ---
Well, I've almost made it to my 5-year post op 'all-clear' status....question is....I had NO treatments after surgery, only 1 PET scan.....should my ENT have exercised more options of CT/PET/MRI to finalize my '5-year, all clear' status?
What do you do to prevent recurrence?
Hello, I’m looking into what can I do to minimize recurrence risks other than eating healthy etc. and found this article suggesting that one should attack these specific types of cancer cells to ensure non-recurrence. Anyone care to comment? Do you know about this topic or do you follow a preventive regime that you can…
Long term childhood survivors
I'm a nearly 40 year childhood cancerous brain tumor survivor. I'm hoping to find someone in a nearly similar situation.
ovarian 3c 17 yrs. NED
This is my first post. I just want anyone who needs it to know that I was first diagnosed 3c in June 2007, had 13 hours surgery followed by 5 rounds interperitoneal (couldn't take the sixth) & 6 rounds IV, carbo, cis, & taxol. I was 54. Recurred in 2008, surgery again, then 6 rounds gemcitabene. Recurred in 2011, surgery…
Welcome long-term survivors!
Some of you who have been living with cancer for a number of years (in or out of treatment) have asked for a board dedicated to the discussion of long-term survivorship issues. I hope it is helpful. Best to all, Greta (Your CSN staff)
Internal/external radiation for cervical cancer
I had cervical cancer in 2003 and had internal and external radiation. I used a dilator, along with sex, maybe 1-2 times weekly to no avail. Even unsung the dialators 3-4 times weekly didn't prevent me from completely closing 2 years ago. I am devastated and have tried to be grateful for life, but it saddens me to not be…
my story
I am very new to this site. I am a cancer survivor since 5/1984. I was diagnosed with ANL when I was 14.
My study of cancer
I do a lot of research and a healthier lifestyle can significantly reduce your risk for cancer. When you have diagnosis that means your cancer developed quite a long time. Cancer is from chronic inflammation. Certain cancers need different treatments. For example, colon cancer was from inflammation of the colon so you…
High LDL
I have been experiencing High LDL since 2008. I have ruled out its not Diet, Thyroid or Genetics. Statins do not lower my numbers and they cause muscle pain. Nexletol/Ezetimibe did not lower my numbers either. My last idea, is another late effect from chemo and radiation? Even So, what are the alternative options for…
Having depression - anyone else?
Hi all. You can read my story in my profile - I don't wanna rehash the whole thing but basically have had three cancers and am currently over 2 years cancer free (yay!). However, I am in a very stagnant position. I can't seem to start anything. I don't see the value in many things. I lost my singing voice with this last…
Black Seed Oil
New here and representing a relative. We're newly into prostrate treatment and glad to belong to this support group. Wondering if any survivor has registered positive outcomes from the use of black seed oil. There's numerous research suggesting it's use in killing cancer cells. Happy to learn from your experience.
Pancreatic Cancer
I have been searching the internet for a few months to find out about pancreatic cancer survivors and what is the longest a survivor has lived? I myself had surgery last year for pancreatic cancer and after my surgery was told by the surgeon to get follow ups every three or four months based on the posibility that my…
What Actual Cancer Org Findraising $ Goes to Survivors (not Meta or LT Treatment)
The cancer community [Content removed by CSN Support Team] raises millions upon millions annually (and pays executives very well). Yet my research shows that ZERO dollars are available to patients who survive treatment - with all the horrific long term physical, emotional, and financial hardships. Every single financial…
Long Term Financial Destitution Ending Life
Diagnosed with Breast Cancer at age 40. Complications from treatment caused long term damage to intestines, nerve damage, cognitive issues. Had to go on disability and declare bankruptcy (medical debt). Hit 5 yr mark. But nothing to celebrate. Barely making it. Have been homeless twice. Cannot afford dental and need it.…
Ovarian Cancer metastasized to Liver
Could use a little support from any Survivors of Ovarian cancer stage 3 serious that has just spread to the Liver .. Was on Keytruda combo for awhile but has stopped working and don’t know what other options may be Available ? Has anyone been in a Similar situation and could u Please explain what options are Offered after…
Anger, anxiety, depression for survivors
I had my last reconstruction surgery in September. I thought I'd feel great at this point but instead I'm irritable, anxious, sad. I feel ashamed to be feeling angry when I should feel lucky to be alive. Most days I'm fine unless something sets me off like the death of a colleague this week. Accupuncture, therapy, and…
Experiences to share with new patients
Hello everyone, as people who have dealt with cancer over the years, we can perhaps share our experiences and tips to others who might benefit from our stories
25 years cancer free but now....?
Hi all, I am a 56-yr-old male and this goes out to all cancer survivors. I had Hodgkin's lymphoma in the late 80s/early 90s, with surgery, radiation and chemo treatments. Then I was in remission/cure for 25 years. Last year, on the actual month of my 25th anniversary of being cancer free, a scan being done for something…
When people are not being supportive
I don't think my spouse is really suited to support me in my fight against cancer. It has been mostly me supporting her, and I have grown weary of it. It is like she is the one with cancer, but she is healthy as can be. I have taken care of everything for her financially. At this point I need to spend my money on myself…
Long-Term Survival and PTSD/Depression
Hi fellow survivors. We are a lucky bunch. I feel lucky. In 2010 I was diagnosed with a violently aggressive Diffuse Large B-Cell Non-Hodgkins Lymphoma, went through dose-dense chemo, radiation and other madness. And I survived. I have no fear of it ever coming back. And... I'm not angry or sad that I got sick. I am…
Multiple cancer diagnosis
Hello to all, I am a 51 yr old male that has just recently been diagnosed with a 3rd cancer. Had testicular in 1998, then diagnosed with CML in 2015 and recently adenocarcinoma in April 2021. I am curious if my situation is rare or common with the multiple diagnosis in one individual. Any info or comments is appreciated…
Stage 3 and 4 diagnosis
I'm a uterine stage 3C cancer survivor, approaching my 2-year marker post treatments. As my little mind starts churning on "will it come back or won't it", I thought I'd ask the LT Survivors a few questions. What type of cancer, stage were you, did you have any recurrences, time frame from diagnosis and today and how are…
Diet and lifestyle that definitely helped healing during treatment
Hello all, First, sorry for my English, English is only my second language. I want to share with you our experience with breast cancer (and I truly hope it helps with most cancers). More than ever, after this experience, I know that cancer (like most disease), is the result of an imbalance in personal or family life,…
The maze of disability insurance, Social Security and other insurance, can anyone shed some light?
I was diagnoised with NSCLC in January and stopped working the day before my left lung was removed (March 31'st). I am fortunate in that my employer has very good short and long term disability insurance, and thus far I have only lost a small portion of my income. I run out of short term disability on July 1st but will not…
Covid-19
Hi all, I was wondering if any of you long times survivors were unlucky enough to catch the Coronavirus and how you coped with it?
Long term side effects
Hello! 18 years ago I was diagnosed with and underwent treatment for Hodgkins Disease (chemo and radiation). I am so honored to be a survivor! Now, almost 20 years later I am having some major health issues and the more research I do, I seem to find that there are some long-term side effects to having had cancer…
anyone had cataract removal after total body radiation and now have 24/7 eyepain? Stories about lasi
I am a 30 year survivor and even back then I was told that down the road I will have early arthritis from the total body radiation I had during my autologus bone marrow transplant plus will have to have early cataracts removed too. I had a lot more side effects than just those too but of course who would have thought I…

Long-Term Survivors

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