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It's time to stand up and be heard!
They are starting to see us and understand the point we are trying to make, but we are a long way off. You’re still blaming me for everything going wrong and coming out and saying Sometimes, don’t take this as weakness. I have been doing it all my life with no prevail, begging for mercy. Trying to find the happy medium, no…
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New Prostate biopsy results
I’m a couple of months from 65th birthday. Just received results from biopsy: Gleason 3+3=6, Category 1 cancer - most common, low risk. It shows perineural invasion, which may slightly raise the concern for spread, but the overall Gleason 6 cancer is usually considered low risk. MRI showed PiRads 4 lesion contained…
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Breast Conserving Surgery vs full Mastectomy
I was diagnosed with triple negative breast cancer that was caught early. 2 tumors less than 5cm in my right breast and 1 lymph node that is cancerous. I have completed 3 of 8 cycles of chemotherapy and immunotherapy treatment. I have a life changing decision to make about my options for surgery. Can someone please share…
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Maling porocarcinoma
Anyone out there who have any experience with this rare diagnose? My dad got his diagnosis 7 month ago. It has now spread all over and there is nothing more they can do for him. But no one can tell me what to expect because no one knows anything about this type of cancer in Denmark, where i'm from. So if you know anything,…
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7 year follow up
Last week I went up to Cleveland Clinic for my 7 year follow up. I met with 2 different NPs (3, if you count the one that was shadowing). It was pretty routine - lots of questions, say ahhh, scope through my nose and down to the original BOT site, say other syllables, etc. Everything looked good and I once again proved to…
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Mercy Isn’t Weakness: A Survivor’s Final Demand for Recognition and Rest
Mercy Isn’t Weakness: A Survivor’s Final Demand for Recognition and Rest Hello CSN community, My name is Joseph Perusic. I’m a 60-year survivor of Wilms Tumor, and I’ve spent decades living with the long-term consequences of treatments that were never meant to be tracked this far. I’ve endured strokes, vascular…
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Hello
I just read my blood test results and my thyroid is through the roof at 9.30. I was diagnosed in 2021 with brain,spine and lung cancer. September of 2022 I ended up in the hospital for 30 days with pneumonia. I wasn't supposed to make it out. I was told to prepare for end of life. Well, I did make it out. But,…
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Any one had a rare side effect called Triple M overlap syndrome (TMOS
I’m looking for any one who’s has had a rare side effect from immunotherapy called Triple M overlap syndrome (TMOS) Patient is stage 4 NSCLC with metastasis to bone.
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Myelofibrosis and CML 190
My husband Joe has both of these rare blood marrow cancers. Anyone know about Leukemia 190? I can't find much about it. My husband is on Gleevec and it decreased the size of the spleen, but now it is back to its original size. Any comments about bone marrow transplants? They have suggested this at some point in time. So…
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Lung biopsy
http://Hello everyone, I'm a 51 yr old female. And I'm having my first lung biopsy on Friday 25. For the last couple of years I have been having problems with my legs and feet swelling. Sometimes they swell so bad it feels like my skin is going to burst and I can barely walk. My knee's are swollen months at a time . I was…
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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…
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Question on endometrial cancer stage 1A Figo grade 2 nuclear grade2 endometrioid adenocarcinoma
I just had a hysterectomy on 11/11 with large fibroids. I was unexpectedly diagnosed with endometrial cancer stage 1A FIGO grade 2 nuclear grade 2 endometrioid adenocarcinoma. I met with my gynecology oncologist today, and he said he wants the radiology oncologist to determine if radiation is needed. Since this was not an…
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SHOW OUT
The Endurer I’ve endured what life has thrown at me. As one of the longest-living, self-recognized survivors of childhood cancer, I want to reclaim the word “survivor.” I’m not just a survivor—I’m an Endurer. I’ve lived through 60 years of survivorship—better known as my own personal hell. I’ve survived. I’ve stumbled.…
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Deciding to end treatment or not?
My husband has been through a lot over the last 5 years ( he is currently 63) but we are now at the point where we really need to decide if focusing only on comfort care is best. Since February things suddenly became very bad with spinal metastasis, which then turned into fractures one pressing on his spinal cord putting…
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Caregiver for husband who is a totally different person now.
My husband has Myelodysplastic syndrome. He has been given 1-3 years. He talks to me so mean now. He never smiles or laughs. He sits in his recliner with the heated blanket and sleeps or stares at the blankly at the tv. I have tried to hold it together and ignore the mean and hateful thinks he says to me but it is really…
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My mothers Permit hair loss
Hello too all C.S.N , THIS IS A POST ABOUT MY MOTHER OF 74 A HEART, BREAST,AND STROKE CANCER SERVIVAL THAT WAS A VICTIM OF PERMANENT HAIR LOSS DO TO A DRUG GIVING TO HER UNDER THIS COMPANY TAXOTERE-14 YEARS SHE HAS BEEN DEALING WITH THIS ISSUE AND NOW SHE IS DEVASTATED OVER THE FACT THAT SHE WAS CORSE IN A MDL CASE AGAINST…
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Newcomer here
I have been diagnosed with cancer of the tonsil that has spread to the lymph node. I am faced with the decision to go with just radiation or radiation with chemotherapy. I am 78 years old so I am leaning toward just radiation. If anyone would share their experiences with me it would be very helpful.
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Scar Tissue on Lungs
Hello all, Got my CT results on Monday. Everything was good except for a couple small spots on lungs. These were very small, about 2 mm. The onc. says he is not worried but ordered a CT scan in three months to see if anything changes. I have read it is not uncommon for people to have scar tissue on the lungs for any number…
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Has Prostate Cancer Been Cured?
Geez! Several days without anyone posting. Seems unusual. Maybe my computer is acting up?
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Triggered Speech (Long Term Survivor)
To whom it concerns—especially the concerned: If you’re easily triggered by pain, suffering, or truth unwrapped in emotion, I kindly suggest you excuse yourself before I begin—because what I’m about to share isn’t imagined, exaggerated, or optional. I lived it. And when I lived it, there were no soft lights, gentle tones,…
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Keeping cool in the summer on Oxaliplatin
Last time I did Oxali was in the fall to winter so with the cold sensitivity I had to worry about keeping warm, but that was manageable. This time I am having the toughest time because it is 90 degrees out every day, but you can't stand too close to the air conditioning or drink or eat anything cold. How do you all stay…
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port removal
I am having my chemo port removed on Monday after two years. Anyone had this done? What can I expect? The nurse told me that it basically is "the reverse of when they put it in," which isn't very helpful.
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Long-Term Hodgkin's Survivors- Late Effects
I have been a member of this group for about 10 years. My user name should now be "50 years and counting!" I just want to reach out to my fellow long-term survivors to find out how you are doing. I'd like to know if you have had any of the "Late Effects" from the kind of radiation and chemotherapy that we received decades…
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Breast Cancer 10 years later
Well it’s been a long time since posting. I was diagnosed 10 years ago in June 2015 with Stage IIIC1, High Grade 3, 50/50 Mix EAC and USC. I was just diagnosed with Breast Cancer. For several years every 6 months I’ve gotten Mammograms, Ultrasound and MRI’s. And 2 large tumors emerged since December. Diagnosed with…
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Survivor
My name is Linda and I finished treatment with chemo and radiation last October, my problem is I am having difficulty living with the new me and the thought that it will come back
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Advice on sleep meds anyone?
I'm in the midst of chemo and wondering how much sleep med. might be too much? I often walk around somewhat exhausted from lack of sleep, rather than take too much, but would love to hear some experiences from others...Am I wrong to think that taking Ambien or Atavan (generic name Lorazepam) more often now, could throw off…
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Post Radiation/Chemo - Pre surgery consideration? / Post severe foot neuropathy
I was diagnosed with stage 3 colorectal cancer in Feb-2024 with the cancer extending into a few lymph nodes. Did five weeks (25 sessions) of radiation & oral chemo then 16 weeks of chemo (6 hours in the chair and 2 days connected to at home pump infusions). The tumor shrank 98+%, no longer in the lymph nodes, had a…
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FOR IMMEDIATE RELEASE
Back by Popular Demand: The Original Mutation Human Being Joe Perusic Reclaims the Blueprint of Survivorship Spring, Texas — July 14, 2025 Joe Perusic, long-term childhood cancer survivor and Director of Survivor, announces the return of his groundbreaking identity framework: “Original Mutation Human Being.” This concept,…
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HER2 POSITIVE SMALL TUMOR
I underwent lumpectomy for what was thought to be a 1.2 CM tumor but only 4 mm was cancer. It was HER2 positive and I have been offered chemo with Herceptin by one doctor and radiation only by another. Not sure what to do. Does anyone know anyone who used Herceptin only without the chemo? Thank you.
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Endometriod Adenocarcinoma Recurrance to the liver
Hi everyone. It’s been a good long while since posting here. I was diagnosed with endometriod adinocarcinoma Stage 1 Grade 1A eight years ago in 2017. That May, I had a complete, Davinci robot assisted, hysterectomy. I remained NED for 6 years. It wasn’t until we went 1 year in between checkups that it was discovered that…