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And so my Journey Begins . . .
My journey is about to begin so I figured I'd set it down and tell it as it goes. As it goes I will update and try to answer any questions. Symptoms: In June 2022 I had my yearly physical and my blood work came back as good so no indications of anything. Felt great. Started August with a sore throat and a full left sinus.…
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"Baroreflex" Failure" A Rare Late Effect Of Radiation Treatment
I came across this article written by a Gentleman on another forum about late-term post-radiation effects which can give you a condition where your blood pressure swings wildly from high to low or low to high without notice. There is no cure but some control can be realized with meds. I just wanted to let the group know…
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Late Effects
The Double Standard Active cancer? You get support, funding, visibility. Late effects? You get ignored, dismissed, or used for research without care. Survivors like me are outcasts until we’re useful—and guinea pigs when we are. I’m Done Being Used I am not your data point. I am not your anecdote. I am not your…
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Our dear CSN member, Danker, has passed away.
For those of you who have been here many years, I wanted to let you know that dear, sweet friend, Danker, passed away in January. AND, he passed away at a grand age, and not from Cancer. I have kept in touch with him, all these years, and when his recent birthday card was returned, I knew that he had gone to be with his…
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severe mood/endocrine/mental health effects from steroids?
New here- my husband was dx fall 2023 with stage 4 oligometastatic CRC (mets to liver). He is (thank God!) NED as of a couple months ago, after 4 months of CAPOX, LAR/hai pump install, HAI pump chemo + systemic irinotecan, ablation, 4 more months of irinotecan, liver resection, HAI pump replacement. He is now on cleanup…
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13 Years NED from stage 3b Signet Cell Colon Cancer
I have not posted in years, sorry for that. I am at 13 years NED and I just had my annual colonoscopy - all clear. I had 12 rounds of 5fu and oxciliplatin along with the right side colon removed. Sending all the best to everyone no matter where you are on this journey!
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Lung cancer survivor
Diagnosed with NSLC in 2019, staged 3d . After oral chemotherapy, Alecensa to shrink cancer spread, followed by radiotherapy , chemotherapy and immunotherapy I have been cancer free for 6 years now. Stay positive and hopeful.
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Keytruda side effects
My mom is in 10th cycle of keytruda for ovarian cancer recurrence. Last month her PET scan showed initial all lesions in brain and inguinal lymph nodes resolved. Doc said to continue treatment for six more cycles. However she is extremely fragile, lost 20 kilos, could take only fluids via tube and nervous all the time. Has…
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Vagal Nerve Damage from Radiation
Hi folks - it's been a long time. My husband had tonsil cancer over a decade ago and got the full chemo and rad treatment. I was active here for a while, but after a few years, I saw that others could provide any info I could, and it was hard to relive the bad days. Now, I'm learning about something that might be new to…
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Post radical prostatectomy sex.
Six weeks ago, I had a radical prostatectomy due to prostate cancer. After my resent doctor's appointment (over the phone) he gave me the green light to have sex. My question is, what will it be like? Will having an orgasm be painful? Will getting and maintaining an erection be a problem? What consideration should I bestow…
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Blood in stools...kind of scared
I'm 5 months post treatment. I've had a colonoscopy and there was no more cancer. I've been on a vegan diet for 5 months. Things were going well until this morning. I had a "normal" stool and it kind of hurt, but there was bright red blood in it. I'm not in pain but it really scared me. I see my general onc next week.…
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Fissure after biopsy
Hi! New to this site, please bare w me... I got diagnosed 2022 w squamous cell approx 2" in the anal canal. Finished treatment 12/22. Had port taken out along w final 6 mon biopsy. 2 weeks later, in debilitating pain, had to go back out on disability. I go to all my docs. They went to go back in for botox. They do a…
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undiagnosed could be anything
so i have been struggling with fatigue and my neck felt puffy since last august but then i came down with pneumonia which was diagnosed close to october but started in september. but prior to that in spring i asked a primary care doctor to feel my neck and she couldnt feel anything. i was anemic in november with elevated…
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Just started treatment
Recently diagnosed with anal cancer stage 3 A, and just finished 1st week of chemo and first 4 radiation therapy treatments, and am already experiencing extreme pain from RT. I keep reading it usually takes a few weeks to become painful, and am terrified because it is already so intense, and bound to get worse. I usually…
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Sharing...good...or bad?
Hello, Have you encountered any family member(s) who grill you about your condition, your treatments, etc. or the person you're caring for, in such a way that after the conversation, you feel…worse? I am wondering how to shut down such discussions, w/o being rude. Any tips? Can you relate? Thanks…
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Treatment
So I start my treatment for anal cancer Stage T2 N1a. I am just wondering what to expect with chemo/radiation therapy? I have chemo/radiation for two cycles, for five days straight. I will be using the pump. (Had my port place in late February.) Anyone have any thoughts regarding the anal pain, will it ever go away?
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mucous discharge
I am 9 months post treatment for anal canal cancer. Can anyone tell me when and if the anal mucous discharge ends? I am sooo tired of having to wear a pad 24/7
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When to Override Parent?
My mom, 74, was very unexpectedly diagnosed with stage-4 lung cancer in October 2024. The cancer is in her lungs, liver, bones, brain, and a few other fun spots. The bone and brain lesions scare her the most. Anyway, she's been on Tagrisso and responded really well, but her most recent PET scan and MRI (last week) show…
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Newly Diagnosis Endometrial Adenocarcinoma
I am 61 y/o and a mother of 3 wonderful grown children. I had been having some postmenopausal bleeding, and my ultrasound showed an endometrial stripe of 19 mm. My primary doctor referred me to a GYN doctor who completed an endometrial biopsy. Yesterday, I received a call from the GYN doctor stating the biopsy was positive…
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biopsy results
Hi everyone...I would like to share the results of my biopsy which I did on April 14th 20025 Biopsy URONAV MRI fusion ultrasound transrectal and I have cancer. If anybody needs details how biopsy goes… you can ask me Diagnosis K Prostate (ROI 1), core biopsy: Prostatic acinar adenocarcinoma, Grade Group 2, Gleason score…
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The Triad of Accountability in Survivor Late Effects
When it comes to the long-term damage survivors face after cancer treatment—what we call “late effects”—it’s not just unfortunate fallout. It’s the result of structural decisions made by three major sectors: Sector Role in the Crisis Proposed Responsibility Hospitals Delivered life-saving treatment without long-term…
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still learning and more
Hey all, I was told I was posting on old comments so hopefully this is to a more recent arena. I was diagnosed on 12/2023. Started as 4+3 later changed to 3+4. Have a quite a bit of cores that are cancerous, but low PSA, no symptoms. I've had Prolaris done, came back Intermediate Unfavorable, but very low prognosis for…
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To Whom It May Concern: I Am Not Gone.
A Living Letter from a Survivor Still Fighting I’ve seen the reports, the search blurbs, the cautious headlines. I understand how easy it is to file away a name like mine into a footnote of survivorship—quiet, distant, presumed done. But let me make this perfectly clear: I am not gone. I am not fading. And I am not…
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Do Not Want to Take Aromatase Inhibitors
Hi, I had a lumpectomy and am in the middle of radiation treatments. When radiation is complete it is recommended that I take aromatase inhibitors. Stage 1 invasive no lymph nodes. The Oncotype Dx test put me in the low risk category, but there is a percentage of reoccurance that is there. The AI's are suppose to cut that…
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does Eligard ever wear off
Can any body shed some light on how long the side effects of Eligard last. Its been 15months since partners last injection and he is still the person Eligard changed him into. Stll hot flushes fatigue apathy disengaged impotence and zero libido. His PSA and testosterone are both still negligable...I keep trying to find out…
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Life after prostate cancer radiation treatment
My life has changed, then maybe not, just extended? Do you feel the same? My close male friends have asked "how are you doing? Then we just go on. However, I am not the same as in so many recent changes of my past consistent body and expected functions. I will share what happened to those that want to listen. It has…
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TrueBeam radiation treatment system
Is the TrueBeam system accurate enough for treatment if no fiducials and no hydrogel are used as my radiation oncologist recommends. I don’t think it does real time monitoring and adjusting for position changes during a session?
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PTSD?
hello I’m new here today and the reason for me joining was wanting to know how people have dealt with their PTSD when it comes to your scans and bloodwork coming back normal for the last year and a half after stage three colon cancer six months of chemo every time I get a bump or don’t feel right I have my mind just goes…
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From an Old Childhood Cancer Survivor to a Young Survivor
I’m speaking from the experience of a long-term childhood cancer survivor—just myself, not all of us. It's been a 60-year journey: good, bad, and everything in between. I don't know exactly what this young person is going through, but when I was their age, I didn’t have anyone to walk beside me, hold my hand, or tell me…
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Stage 3 Rectal cancer Recurrence
Hi I am male with 37 years old I was diagnosed with stage 3 rectum cancer Aug 2023 about 6 cm tumor in my rectum and 8 cm distance to anal verge .I did first CT for checking metastas and it was clear. My oncologist decided 6 rounds of chemotherapy with folfox. After it was ended, I did my second CT and shows that tumor…