Cancer Recurrence: Everything removed, but can it come back?

I started this conversation and yes, 5 years later I had Stage 4 recurrent cervical cancer. Had chemo and keytruda and within 3 sessions I was NED. Dr. Colon-otera and Mayo Oncology were outstanding! No email in my porter went over an hour in being answered; if I needed a referral to check on something, got in right away. Everything in oncology is precision controlled, follow upped, and even the physician called me a few times. I felt secure and cared for - the staff was incredible and they 250 chemo patients in a day. when our buzzer rings, they are right there. Can't say enough good things about oncology at Mayo. On downside was side effects of Keytruda so they had to take me off of it. Yes, I still live with those side effects, but I feel good and am a dedicated Mayoite from here on out! Gina

Hello Amanda 😀 Yes I had a Medullablastoma, they said it was about the size of a baseball when they removed it so probably growing since birth.

Thank you for the welcome Colleen 😀 . My parents have filled me in over the years about the details, my surgery was done on October 15 in 1992 at Minneapolis Children's, surgery to remove my Medullablastoma was lead by Dr. A. Nigeeb.
The Doctors couldn't even predict how I'd come out after surgery, I couldn't speak - I was all mentally intact, just couldn't make the connection. Well after three months and what I believe quite confidently the grace of God, I left the hospital. Got through my 12 year remission and am a handi-capable member of society. I can only hope that with todays medical advances future generations of cancer patients may suffer less.

Hi Quirkygirl (love the name), I'd like to add my welcome. You make such a good point about not having the information about childhood cancer once you became an adult. Do you have access to your medical records from that time? Are your parents able to talk about it with you?

Welcome to Mayo Clinic Connect, @quirkygirl35. Thank you for sharing your story with us. I agree that listening to our own individual bodies is the best way to be your own advocate for your healthcare. It feels as though the system is making it harder and harder to campaign for your own well being, but I do believe that we know ourselves better than anyone else does. There is only so much that testing can detect. Without sharing the symptoms and issues your are experiencing, your physician with never have all the pieces to the puzzle.

May I ask what type of brain tumor you had?

I had a brain tumor when I was ten and now thirty years later discover that somewhere along the way I caught a virus. Symptoms where so random (cold extremities, waking up in the middle of the night not being able to breathe for 30+ seconds, anxieties +depression) I thought they were after effects of chemo or radiation. Then in my thirties I stared getting bad digestive issues, saw a gastroenterologist and my primary Dr. couldn't find anything either. So I had to do the research myself and tell my dr to test my blood antibodies here at the Mayo. Now at almost 40 I have Chronic Epstein Barr.
So to answer your question yes recurrance is always possible. And do your own research people, listen to your own individual bodies. I was unfortunately a minor then so they told my parents a lot more than they did to me, but I really regret not reading up on anything when I was of age.

I certainly understand fear of reoccurrence as I am a 10 year breast cancer survivor. I had stage 2. Strong chemo infusions for 6 months after surgery. Partial mastectomy. 9 lymphnodes removed. One positive. 7 weeks radiation. 5 years of Tamoxifen as I am estrogen positive my cancer. 5 years of Anastrole another anti estrogen. I have see me oncologist every 4 months through the years as I have complex issues. I think most of us would suggest you see your oncologist rather than primary physician for that type of pain for evaluation. Unless you need a referral from the primary for insurance purposes. Don't waste time with primary.

@earscan. Thank you for starting this discussion. I was diagnosed with endometrial cancer adenocarcinoma, Stage 1a, in 2019 at Mayo Clinic in Rochester. following a radical hysterectomy with salpingo-oopherectomy. So, like you, everything was removed. My follow-up care is with the Mayo team every 6 months for 3 years, then annually for 2 more years. My next appointment is in April. I had a total hip replacement 2 months after the hysterectomy (the hip replacement had been anticipated and scheduled prior to developing the endometrial symptoms. My PT at Mayo told me that the hysterectomy with the hip replacement was a double whammy for pelvic floor and hip muscles). I've mostly been able to let thoughts of recurrence or secondary cancers go until the past month. I developed pelvic pain that I could not figure out about a month ago. The pain and achiness has subsided. I went to my primary care physician to rule out a urinary tract infection. I'm hoping as he said that it was due to x-country skiing and snowshoeing where I'm using my pelvic floor muscles in a way that I haven't done since before those surgeries. I'm headed back to PT. Still - these thoughts of recurrence and secondary cancers come back daily.

I want to say you are a real fighter! I am so happy to see that you are going to fight! I pray you have another 13 years!

Thank you for sharing, this is inspirational