Survivors Guilt

First, I am sorry for all you’ve gone through, including dealing with survival….it is very common to have emotional issues after one rings the bell, or when on maintenance therapy… the intensity of a cancer diagnosis is huge—then we go through all the meds/procedures with a lot of attention/focus….once we ring that bell, people around us say it’s over, though it actually is never all over as we face scans/blood tests hoping for no recurrence… some feel guilt, some feel depressed….for me, a mix of feelings, but helping others with cancer has helped, along with immersion in my music.

@bettydee It's been almost 4.5 years since I rang the bell after getting radiation therapy for a recurrence of endometrial cancer (adenocarcinoma). Each time I sat in the waiting room awaiting my treatment I saw other patients who were very weak, frail, and often in wheelchairs. I had a mix of emotions. I was grateful that my recurrence was caught very early, and that I had the means and opportunity to get treatment. And yet, I felt great empathy and yes, guilt, for the patients who seemed so ill to me. Why am I still here and some of these people may not be? I will never know the answer to that question. I can't quite say that I feel survivor's guilt. What I can say is that I put my hand and heart out to people who share their diagnoses with me. I'm careful to bring up my own experiences only if the person asks for it or I think it may help the other person. But even if I do share I'm very brief as I don't want to make the interaction about me.

I don't know if this answered your question. I still have those mixed emotions but with the 5 year survival mark coming up I know I do feel less anxious about my cancer surveillance appointments.

Your treatment was very recent. Do you think with time that your emotions including guilt may change?

I thought I was the only one! I had an “easy “ surgery, chemo, external beam and brachytherapy for stage 3 endometrial cancer and hear from others who were not so fortunate. I gave up on support groups as I felt terrible relating I didn’t experience major issues but didn’t want to lie I was able to work full time and missed two days of work. When I do speak to anyone my only advice is to forget the image of the cancer patients in movies /tv because it doesn’t have to be that way. Treatments have changed. My only other advice is to not google for info and keep moving/walking and to prepare for feelings once active treatment ends -that has been the most difficult for me. Thank you fir the message

@aardvark2118
Totally agree that the most difficult time was AFTER treatment was over. While IN treatment, you knew you had armies (drugs) fighting the battle. And then it’s over. The forces have retreated, back in the bunker. And now it’s a waiting game. That was a real shocker !

@naturegirl5
Thanks for responding. You bring up a good question of do I think my ‘guilt’ feelings will change over time. Great question. I think I’ll feel less guilt when I see more of my inner circle surviving or at least holding steady. My first hurdle was the 6-month mark to see if I was platinum resistant or not. I passed ! The more NED months/years that go by, I’m sure I’ll become more relaxed. You’re coming up on the 5 yr mark. What a great milestone ! Wonderful accomplishment !

@bettydee I agree with you. Being IN treatment felt productive and way better than AFTER treatment. Like you wrote, I felt I was being monitored closely and after treatment I felt alone. And adrift for awhile.

Hi Bettydee. I was diagnosed in 2024 with stage 3 cancer but surgery was able to remove all signs of cancer and I did that adjunctive chemotherapy and now a maintenance therapy. 2 of my friends were diagnosed with cancer about a year after me and both have died. There experience with chemotherapy was horrendous, really. But they choose those therapies. I wish their experience had been different but I don't feel guilty that I'm having a different type of experience nor do I feel guilty for being alive. I don't feel lucky or fortune. I have had friends from many walks of life. I don't feel guilty if I can afford to do something my friend will never be able to afford nor am I envious of those who have more wealth than me. But I have worked with a therapist for years to understand my feelings and why I react the way that I do. Guilt is an unhealthy feeling when you have done nothing to feel guilty about. When a person is trying to heal their thoughts can be as harmful as unhealthy eating patterns.
Having a chronic illness is complex.

@naturegirl5 What stage was your endometrial cancer? Where did your re-occurrence occur? Did you have any symptoms or was it caught in a surveillance appointment? I worry about this, I'm not out of the woods yet

@1995victoria My initial diagnosis was endometroid adenocarcinoma Stage 1a. I had cancer surveillance exams every 6 months. These were pelvic (physical) exams at the time. My nurse practitioner found a very tiny polyp on my vaginal cuff, sent it to pathology, and that was how the recurrence was diagnosed. I had no symptoms and this was a complete shock. This was two years after my initial diagnosis. I then had a PET/MR to look for any signs of cancer in other areas of my body (head to abdomen). The results of the scan were negative. I had radiation therapy - external pelvic and internal brachytherapy (two treatments). After that I returned every four months for physical exam and CT scans.

Since that recurrence I've had NED (no evidence of disease). As for worry? It took me at least three years after the recurrence for the worrying to decrease. I do get anxious before every cancer surveillance appointment but not so much in between appointments.

How far out in time are you from your original diagnosis? How often do you return for your surveillance exams?

It will be one year since my surgery in November and one year in January after my brachy treatments.