Survivorship: anyone else struggling?

I thank you for sharing that you had a tumor, and I wonder if they found it during the physical exam or during your CT? I hope that you are doing well now! Best wishes…

Thank you for sharing your thoughts and feelings about this, I surely do empathize. As fortunate as we are to be on the other side of front line treatment, the challenges now are so much more complicated and I find I am less goal oriented. Of course, grateful to be NED since December 2020, I think there was a big part of me that thought I would find my way back to the life that I understood—and that’s really not the case. That original version of myself that I had cultivated at 62 years old is gone. This is definitely the most challenging time for me Psychologically, and then there are a lot of long-term physical lingering issues stemming from the chemotherapy. I keep thinking that to configure an enthusiastic and creative version of one’s new normal self is the key! I wonder, may I ask what book you read that talked about survivorship being a huge challenge? Thank you again for your thoughtful comment! Wishing you the very best!

@samuel8
My tumor was found during a surveillance exam (Every 3 months). My gynecological oncologist believed that it was a type of scar tissue that can bleed and he biopsied it. He was quite surprised when he called me a few days later and said that it was the exact same cancer that I had in February of that same year (2022). Things happened quickly at that point. I was given appointments for an MRI, blood work, PET scan, met with a radiation oncologist, had a colonoscopy and multiple other things. My surveillance appt was on Sept 26th, and the colonoscopy was the final hurdle to get me cleared to begin radiation and that was on Oct. 7th. On the PET or MRI there was a bad picture (only 1) that showed something in my colon so that had to he cleared prior to starting radiation. When I met with the surgeon who was to perform the colonoscopy he said he believed it was nothing more than a bad picture, but he also stated that it was in my best interest to have it checked out because if that area would need treatment that could be worked into my treatment plan. I had my first external beam radiation treatment on the 17th of October and finished those right before Thanksgiving. Then I had a week off and then 3 brachytherapy treatments (1 every other day). I still had several appointments in December and then the holidays. After a few months of appointments, tests treatments and a ton of running I literally didn't know what to do with myself in January. I was able to work normal hours again and the gastrointestinal side effects all improved.

Hello the book is The White Noise of Survivorship by Tara rolle. I found it summed up so well what I am feeling about the end of active treatment and the fears of moving forward. Best to you

I, too, would like to echo the sense of uncertainty that each of you has alluded to in your posts. I had my surgery 2/23 and am doing very well, except that each time I read about someone experiencing a recurrence I have to ask myself if what I'm doing and if the level of surveillance that has been prescribed for me (currently every 6 months) will be enough to catch a recurrence while it's still "treatable." My understanding of endometrial adenocarcinoma following hysterectomy, oophorectomy and sentinel node biopsy with negative pelvic washings, is that any recurrence can only be detected by physical exam. I am depending on a medical professional's tactile senses to detect new growth of cancer cells. And, if this is what is required, how big does a tumor have to become before it is palpable? And once it is that large, what is the likelihood of further invasion around the vaginal cuff and pelvic region, and/or metastasis? I try very hard to have faith in what measures I am taking, including all the cost and effort of returning to my treatment team at Mayo. It IS challenging, though. Everyone I speak with says, "Yay!" when I tell them how well it's going, but I just don't want to rest in that and miss something that becomes unfixable. And, again, I know that I can only respond to what's so in each moment in my life and living in the future can be unsettling. I just want to express my appreciation for those of you willing to share here how you are struggling and/or coping with those struggles. I feel SO much less alone in it! I thank you all from the bottom of my heart and wish each of you excellent care, safety where possible and lovely days and nights.

To me the scariest part since leaving active treatment two weeks ago was the feeling you alluded to if not doing anything proactively to prevent a recurrence. As long as I was receiving chemo, radiation I was doing something. Now I feel like I’m in a waiting game. I try to keep busy and not dwell on it and figure out how to live in the moment and keep the fears at bay. Knowing others are feeling the same helps because it is hard to explain to others when you “should be” happy treatment is over. And you are but a new fear crops up. To me this stage has been so much more difficult than any of the treatments. Thank you sharing

Once one has had cancer it is hard to go back to one’s life before. Your have to be overly proactive make sure you have your doctor use a speculum each time you have a visit, several of mine didn’t and they missed my recurrence. I now have an gyno oncologist and a regular gynecologist. My gynecologist is fabulous she explained everything she does from putting her hand on my thigh to explaining what she sees. Maybe you could ask your doctor to do the same for you? It’s hard unless you’ve had cancer your friends really cannot understand how you feel and the frustration that you feel wondering if you are getting all the examinations and tests needed. Be well.

I saw this at my medical oncologist and thought it was a beautiful way of expressing cancer.

Thank you for sharing your experiences and thoughts, Jean. May I ask if you could speak a little more about the use of the speculum? My OB/GYN never used(s) a speculum, and I was curious how a recurrence could be missed if one was not used during exam…being as I think they feel the new growth rather than to see any changes? Thanks for your thoughts when you have a moment and best wishes.

Thank you for sharing this. I think that your words so beautifully express the complexities of survivorship… With the added responsibility we feel of supporting the reactions of those close to us in their enthusiasm. And the enthusiasm is of course, so welcome, but leaves us with a deeper feeling of being isolated with ongoing worries that we cannot express. Best wishes to you and thank you again for sharing.