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📌 1. Summary Explainer – “Survivorship at 60: A Record They Never Measured”
Who I Am: Joseph Perusic, diagnosed with Wilms tumor in 1965. Treated at Texas Children’s Hospital. No long-term survivorship follow-up provided. Now 60 years post-treatment and documenting systemic neglect, long-term complications, and unacknowledged survivorship. What I’ve Experienced: Multiple medical complications…
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Boston support
My name is Paul. I am an anal cancer survivor (4 yrs). My partner, Peter, is also an anal cancer survivor. We are available to any gay men in the Boston area for support with cancer treatments and recovery. Especially anal-rectal cancer. I will check here periodically to see if there is anyone interested in support.…
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Should I have surgery sooner???
I am a seven-year-old diagnosed with aggressive prostate cancer, this is my situation am I waiting too long to have surgery July 30, 2025 when I was diagnosed after the biopsy May 12, 2025? May 12, 2025 Biopsy reported PROSTATIC ADENOCARCINOMA. GLEASON'S SCORE 9 (GRADES 4 + 5) NOTED IN 1 OUT OF 1 SUBMITTED PROSTATE CORE…
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IDC breast cancer 1B and upcoming colonoscopy
Hi 👋 I’m full of anxiety and fear. Just wondering if anyone else here has had a colonoscopy as during the testing phase of determining how to treat the cancer. Any advice or stories will be greatly appreciated. Thank you in advance!
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Inability to ejaculate
I finished treatment a year ago (radiation). My orgasms now are very weak and, of course, I don't ejaculate anymore. I did at first but it's gradually gone away. This has made me damaged goods. All I hear is "did you ****?" or "are you ever going to ****?" or "why can't you ****?" I dread having sex but (not bragging) I'm…
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i feel so pretty now :)
I've kind of been wanting to get my ears pierced to add a little feminitity lately, but I asked my husband last week and he told me he doesn't like pierced ears, so I said, "oh, okay, no biggy. I won't do it". Well, yesterday we got out of the truck at Cici's Pizza, and this old guy asked my husband, "is that your boy…
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Carotid body tumors need help finding specialist!
My husband is 40 years old and doctors just found 2 carotid body tumors on a ct scan, one on right side of neck and one on the left. Surgeon that requested ct scan told us today to do our research and get him to a specialist in these tumors as he is not and doesn’t know anyone around here that is. We are south of Buffalo…
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Skin care around the PEG
Any tips on care of the skin around a peg? The dressing got wet with drainage and in no time the skin around the peg became quite reddened and raw. I have been cleaning with a baby wipe and drying the area then applying aquaphor ointment.
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Free LE ( lymphedema ) Alert Bracelet
I have seen several posts on here about lymphedema and remembered that there was a site that many of us got free le bracelets. They were really bright pink, almost neon, for your wrist, but, you want it to get attention. They also have neon green for your ankle. I ordered one awhile back when I went in for some outpatient…
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Side effects of radiation and chemo for treatment of NECK cancer.
Hey all. I am new to this forum, but I have questions. I am 7 weeks post radiation and chemo treatments for HVP small cell squama's carcinoma. I knew most of the side effects going into my treatment plan. They all sucked but I knew. I lost my taste after week 2. Needed a feeding PEG tube after week 5. The horror show had…
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Insurance
I got married late last year, just after hitting two years of clean scans, and lost my insurance since it was income-based. I have tried every insurance, and I just can't afford more than 100-200 a month, and the ones I did find had such a high deductible that it's the same as not having insurance. I feel defeated. I had…
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PEG tube pain
Had PEG tube put in on June 1st and am healing slowly. Still have some blood on gauze when I clean and change it. I am sore at the location however, the real pain I am having is to the left of the stoma... about five inches away. It is like a muscle spasm that only lasts a few seconds at a time. I called my Gastro doctor…
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Just wanting to be happy after cancer
Did You have a full life before you found out? How did you react to the news? Are you feeling defeated now that chemotherapy and radiation treatments are done? Are you struggling with what you used to look like vs how you look after cancer? If you are like me, I wish to talk to you about your journey and what you’re doing…
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Muscle spasms due to Neulasta?
Hey all. I've had my second chemo & will get #3 on Monday. This time around the overall fatigue & the aches & pains from the Neulasta were quite a bit worse. But the real problem is these very intense muscle spasms that I'm having in my back. I had them the 2nd week after treatment #1, but this time they're much worse. So…
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Lesions/moles without skin markings.
Hello. I just discovered a lesion/mole on my upper chest/shoulder area. It measures 4mm at the widest, and it is light brown in color. It's different from my other moles because it doesn't have skin markings like my other moles do. I don't know if it's a lesion or a mole. It is slightly raised out from the skin. It does…
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Has anyone had rEPOCH cycles for DLBCL ?
Completed 6 5-day cycles of rEPOCH for Diffuse Large B-Cell Lymphoma earlier this year and have not met anyone with this treatment and I know there must be others with this experience. How are you doing and how long did it take you to start getting things together? Would appreciate your response(s).
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Surgery
they have not offered it to my dad either , after total gastrectomy he was cancer free from from December to April now his routine scan shows it spread to peritoneal cancer and they have not offered the surgery or Hipec …. only chemo which they keep delaying because of his health ( weight ) So they cancer is just…
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Peritoneal Cancer Chemotherapy
Good morning, I was officially diagnosed with Peritoneal Cancer on 10/04/2024 so I am new to this and it is terrifying. I have a primary tumor and it has spread to a portion of my liver. The plan is to do three rounds of chemo Carbo and Taxol plus Avastin and then have surgery. My first chemo was scheduled for October 18,…
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secondary peritoneal cancer
Hi, just sending new so far on my husband Ian, he had his last of 8 cycles of chemo today, for colon mets in peritoneum. Next step is ct on 13th and then results on 19th. He has done so well so far, the ascites has not returned while on the chemo, we are hoping that this will be it, and chemo finished for good!! Oh well…
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Peritoneal and colon cancer
My husband was diagnosed in late september 2024 with Stage IV colorectal and peritoneal cancer (lining of stomach). He was very sick and had lost a good deal of weight and had a tumor obstructing the bowel (partially). He was in pain and felt bad or very bad almost every single day. After 6 rounds of chemo (48 hours each…
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CAPEOX v. FOLFOXIRI - comparisons?
I was diagnosed with T4bN1bG2M1 colon cancer with perineural involvement in 2023. RO colon surgery followed by 8 cycles of CAPEOX. Lung met that had remained stable during chemo but started growing again was removed this March because it appeared to be solitary, followed by a swift recovery. We are only 3 months later and…
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Therapist Help
Hello. My husband was diagnosed last November with Stage IV breast cancer. Last Monday, the oncologist told us the tumors are resisting his current medication (Truqap) and he would need to go to a clinical trial or chemo. He's struggling with this news, and I think it would be beneficial for him to talk to a therapist…
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Alcohol
I am a rum drinker. Nothing from February thru May. But had some beginning of this month Next few days were rough. That’s a new thing for me. Any others experience same Hate to have to stop doing the one thing that gives me a little pleasure. Love having an aged rum on ice. I’m a neat sipper of anything over $100 Thoughts…
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Daily vitamins after radiation
I have just recently finished radiation and wondered when it is "safe" to start taking daily vitamins, D3 and calcium, again? I have an appointment with my onco in a couple of weeks and I know I could call but there are so many of you that are finished with radiation, I was hoping you could answer. Thanks.
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Burning & Stinging when Eating
Hi, I'm Lisa. I am 1 month out from treatment for tonsil cancer. I had a PEG tube put in at the 3rd week of treatment due to horrendous mouth sores/Mucusosis. At one point, I could not even drink water. Since finishing treatment ( 7 wks Radiation, 6 chemo) I have been trying hard to introduce foods and drinks by mouth to…
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For those of you with Leukemia
I just wanted to survey and find out how old you all were at diagnosis and what were your labs like? WBC? neutrophils? anything else abnormal? I don't really have any symptoms but I am seeing a hematologist/oncologist at the moment and recently had some elveated labs which is unusual for me as I never get sick, not even a…
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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.
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Seeking long term Survivors of Stage IV Wilms
I have read a lot of success stories about Wilms Tumor where the tumor was diagnosed at early staging (I or II), but what about successs stories of Stage IV Wilms? I've met some Stage V survivors, but have learned that each tumor is staged separately in Wilms V and oncologists consider Stage IV to have worse outcomes. My 4…
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Squamous Cell Rectal Cancer
Starting new topic because existing threads are well over ten years old, and I know this still exists because it is what I have. It is treated like a anal cancer but located in rectum so not the same. My current issue is follow-up care. Diagnosed June 2024, Negro protocol started September 2024, completed treatment October…
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Myxofibrosarcoma
Hello I'm new here. Sitting at home recovering from surgery to remove a lump from my hip. It came back to be high grade myxofibrosarcoma. I'm 41 and worried, not going to lie. Anyone else know what my family and I have ahead of us or going through it?