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Survivorship: anyone else struggling?

Gynecologic Cancers | Last Active: Sep 2, 2023 | Replies (47)

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@gynosaur42

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.

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Replies to "I, too, would like to echo the sense of uncertainty that each of you has alluded..."

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

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.