-
Essential thrombocytosis
Hi there. I am looking for anyone else who has this disease/cancer (depending on who you talk to). It is very rare. Any fellow ET'iers out there? It would be nice to compare notes… :]
-
Annual checkups
I am right at 6 years post surgery and almost 6 years from the end of chemo, and brachytherapy with no recurrence. I still go for annual checkups with my oncology GYN. How many of you continue to do this? I really love my Dr but she is retiring at the end of December. I will still go to the same oncology center and the PA…
-
Choosing NOT to treat
I decided decades ago, after watching several generations of women die of cancer, that I would not be treated when (not if) I developed cancer. That decision has never wavered; what I've seen since has made me more determined and content with my choice. So here I am. But it turns out that doctors don't particularly…
-
anal cancer
I just found out that I have cancer in my rectum. Last week, coloscopy; next week, CAT scan & surgeon meeting. I don't have family; my husband died in 2013; friends don't know much about cancer & neither do I. I'm afraid and anxious, trying not to get depressed. I'm looking for conversation to help me thru this process.
-
Right renal cystic lesion 3.2cm
Hello 48m I was wondering if anyone had any information about my CT w/contrast or US report I have an appointment set with urologist in 20 days, long wait and very worried. US -2 complex cysts, the larger in mid region is 2.8x2.0x3.2 in 2019 it was 1.5x1.1x1.1, margins are irregular. Internal septations noted. No dominate…
-
My 35-year-old husband has cancer, and I don't look at him the same way anymore
My 35-year-old husband of 10 years was diagnosed with leukemia five months ago. We have been together since we were teenagers and have had a borderline perfect marriage up until his diagnosis. I have always loved him deeply, and he is a great man. The first few months were extremely traumatic for me, and I had to bear the…
-
Radiation Burn Spray
Hi, this may be of use to anyone but was thinking of Pattie at this time. I know she mentioned starting treatment this week. The spray I used to ease the pain on my butt, groin area is called Dermoplast...it is usually given to women to spray on after childbirth and can be purchased over the counter at most pharmacies, I…
-
Blood test to detect HPV+ SCC - NavDX
I haven't read a lot of the posts.. however, in the ones that I have read, I haven't seen anything about the NavDX blood test. I just went in for my 9 month post treatment check-up at USC, and my ENT had ordered blood drawn for the NavDX test so that results would be in for my check-up appt. While my initial cancer was in…
-
Another lymphoma diagnosis
Well the other day I got a biopsy result from a lump on my neck that indicates Large B-cell lymphoma, germinal center type. Don't know much else yet. Scheduling an appointment with an oncologist ASAP to hopefully learn more soon. Also have a full body scan scheduled for next week. Originally went to a ENT doc for the lump…
-
Looking for others with NSCL EGFR mutation
Hi I am 43 years old stage 4, Korean. I am looking for anyone going through the same situation. I am super lonely. I need friends. I live in PHX. Please contact me if you know anybody. Thanks advance. Julie
-
Low Dose Radiation Treatment for Osteoarthritis ??
After I completed rad & chemo in 12/21 my rad doc said I should avoid all radiation, if possible, going forward. He is now pushing LDRT for my OA in my thumbs (after hearing that while I have OA in my SI & SC joints on the right side - there is no pain in the joints themselves). From what I could find on the the net it…
-
scaring on vocal cords - 3 1/2 years post treatment
saw rad doc this month for semi annual check up. (NED) he said he saw some scaring on vocal cords, which has never been previously noted before by him, the ENT surgeon and the speech pathologist. He did not offer any other info about it. I didn't think to ask him about this in more detail (I got distracted by his sales…
-
Anal cancer
Hi I’m close to starting my treatment and I’m scared to death! Please tell me what to expect🥹
-
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…
-
Clinical Trials - some general questions
I'd like to make sure I understand the concept of clinical trials correctly. when a clinical trial is available, the whole point of it is to test a newer or emerging therapy or treatment that may or may not be better than 'traditional' or established treatments, is that correct? their might necessarily be increased or…
-
Val Kilmer's Throat C, Trachea, and Pneumonia
News just broke about his death, due to pneumonia. Think he was treated in 2015, but uncertain about the details and if surgery was involved. What is certain pertains to aspiration and pneumonia. FT-dependent since 8/2019 because of Rad damage to the top 1/3 of my esophagus, everything I swallow goes into my lungs. Thus, I…
-
immunotherapy with stage 3 colon cancer
diagnosed in February of 2025 just finished 3 months of chemo (Oxyplatin and 5FU) had treatment every 2 weeks and now doctor suggest immunotherapy (Atezolimaub) because of the new results from the ATOMIC study that came out in June 2025. Has anyone had any dealings with this particular drug? I am MSI High and Lynch…
-
opinions and experience? time of day taking Relugolix (Orgovyx)
Hi y'all. I had a heckuva time deciding on treatment, having had several options. I settled on ADT, HDR brachy and photon radiation. If I recall correctly I'll get 65 gray total radiation. and I'll start with ADT - Orgovyx for 6 weeks before radiation starts. I was advised to take the pills any time of day I choose, but be…
-
Pain..So much pain
I would like to know if anyone else is suffering from aches all over their body. My hips hurt when I try to walk..the feel like they are in a vice grip. My knees hurt all the time. When I wake in the morning my hands are stiff and hurt. I never had this before I went through cancer treatment. I am currently…
-
Myelodysplastic Syndrome (MDS) Support
I'm looking for anyone who has or knows someone who has MDS. Doctors diagnosed my dad with MDS in 2024. I haven't found much yet in terms of support for MDS patients and their families, and am very interested in connecting so we can share what we find out and support each other. Please let me know if you're interested.
-
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…
-
My story
This story isn’t for pity—it’s for perspective. I wrote it for those who never got to speak, and for those trying to find the words. Survivorship doesn’t end with treatment—it echoes through every part of life. And this is how it sounded for me. I want everybody to understand why I waited 60 years to come out hard with…
-
When you know someone needs you but they will not open up
I first want to thank you for reading my post. I sit on many volunteer boards for Cancer and promote a cancer policy. I don’t do it for monetary value but only to help others from the financial devastation I went through many years ago. I was fortunate that my family member survived. Most recently, I have a few of my…
-
Stomach Cancer - Thoughts / Doctors / Etc
Hello, my mom was recently diagnosed with stomach cancer (adenocarcinoma) locally advanced. She just started FLOT and the plan is to do 4 treatments, surgery, and then do another 4 treatments. Starting to learn a bit more (HER2negative / MMR loss on MLH1 / PMS2 (testing for Lynch syndrome now which could change some things…
-
Recently diagnosed with stomach cancer FLOT treatment plan
I’m 49 recently diagnosed in Feb 2025 called adnocarcionma. It was regionally advanced to lymph nodes. Borderline at stage 3 or iv. After 4 times FLOT chemo now on PET there is a highly suspected metastasis to bone although tumor has seen internal shrinkage. I have my intral opening blocked to small intestines, I can’t…
-
Chemo Teaching
Had my chemo teaching today…and of course one of the most important things is to eat… Any suggestions that worked well for y’all? I’m extremely overwhelmed!! How about mouth sores? Anyone prescribed Letrozole? This was something that my doctor may want to add to my plan.
-
HPV P-16 Throat Cancer Survivor-Am I Putting My Sexual Partners At Risk?
I am NED for over 2 years. I was HPV positive P-16 Stage IV throat cancer. I had a tonsillectomy, 35 radiation treatments, chemo, and a modified radical neck dissection. Then the wife filed for divorce. Now, I'm now out on my own entering into my first sexual relationship, post-divorce. The Drs told me I could've been…
-
False positive PET
So in December I had a PET scan with Deauville score 5. One of the nodes where my original diagnosis in 2017 showed SUV uptake of 20. Local oncologist sent me to University Hospital in state. They looked at PET scan and begin talking about clinical trial CAR T. This was second relapse after RCHOP first line of treatment…
-
Cravings?
Ok...so this weird and a bit light hearted, but we all need to think of something weird and wacky from time to time! I have found that since my diagnosis, I have experienced a range of cravings...have you experienced the same thing? Initially, after diagnosis, I really wanted wine and chocolate..lots and lots of wine and…
-
Childhood Cancer Survivor Late Effect /Understanding the Battle
Joe Perusic is not just fighting for survivors—he’s illuminating the battle they’ve already endured. A battle of long-term side effects, systemic silence, erased records, and overlooked pain. Too often, advocacy is flattened into noise, and survivors are seen as “difficult” for daring to speak the truth.