Survivorship: anyone else struggling?

Posted by aardvark2118 @aardvark2118, Aug 12, 2023

Anyone else just starting the survivorship journey and scared? Diagnosed with endometrial cancer in November. Surgery in December. Chemo January to May. Radiation and brachytherapy just ended. Now am felling on my own to monitor my health and scared to lose all the support I’ve had these past months. I read one book that describes survivorship as the true potential fir torture exists. Trying to find the new normal amidst surveillance. Anyone else struggling with this?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Almost. two and half years out and still treading water on an ocean of fear...Some surviors can compartmentalize their concerns and go happily on with their lives. I wish I knew their secret...

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Oof, I feel this comment! Thank you for posting it, and sharing your fears, aardvark2118💜 I also had endometrial cancer: I'm just over a year and a half out from my last chemotherapy treatment (December 2021) and I notice my anxiety and fear really comes out when I return to Mayo for my surveillance appointments. It's like my body remembers all those drives down to those terrible afternoons, and though consciously I know it's different now, my body doesn't. I try to be really gentle with myself in the week or so before my appointment, and really listen to my body's fears (rather than interrogate or denigrate them!) I notice, too, that my fears and anxieties manifest themselves in my body, rather than my mind. For example, this time I am SUPER tired, a bit down, and even got these weird skin bumps that itch and look like bug bites (but aren't). I'm comforted by your post and knowing that a lot of us are not alone in these worries and fears: thank you!

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@esikora

Almost. two and half years out and still treading water on an ocean of fear...Some surviors can compartmentalize their concerns and go happily on with their lives. I wish I knew their secret...

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Thank you for sharing this. I'm glad you're still "treading water:" sometimes, that's all we can do, right? Wishing you a few more moments of floating on your back on calm seas as the days go on 🙂

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@esikora

Almost. two and half years out and still treading water on an ocean of fear...Some surviors can compartmentalize their concerns and go happily on with their lives. I wish I knew their secret...

Jump to this post

Thank you for sharing. I’ve not figured out how to compartmentalize any if this. Maybe it’s too soon to expect much. The physical in all of this was the easy part. The fear is the worst part. I hadn’t realized until recently how much I had benefited from the support of the therapists during radiation and now that is ending. One of the biggest fears if that of no longer doing anything proactively to prevent a recurrence . My final brachytherapy is Tuesday and then it’s up to me to monitor fir signs and symptoms . Yes I do have follow ups with mds but these past months I’ve just needed to show up fir appointments and pretty much do as everyone said as they were keeping track of everything. Now it’s up to me. See my gyn Onc in September and hoping I get more info on plans going forward I’ve realized how much I’ve been holding in these months so as to not worry others. I can’t explain why sometimes I just want to cry so I’ve held all of it in and now it’s slowly escaping. I’ve tried to explain my fears but am told I should be happy the treatments are over - and I am but still scared. Thanks for listening (or reading!)

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Consider joining a support group for survivors. Share at https://www.sharecancersupport.org/ has support groups for all gynecologic cancers as well as exercise, nutrition, and specialists giving updates. I've had Ovarian Cancer 3 times. I don't fear it because I believe I will live as long as God wants me to live. 23 years of surviving. Yes, there are physical issues, but they become less important as I focus on the spiritual. The Share group with other survivors may help you "move on."

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@cipnsue

Consider joining a support group for survivors. Share at https://www.sharecancersupport.org/ has support groups for all gynecologic cancers as well as exercise, nutrition, and specialists giving updates. I've had Ovarian Cancer 3 times. I don't fear it because I believe I will live as long as God wants me to live. 23 years of surviving. Yes, there are physical issues, but they become less important as I focus on the spiritual. The Share group with other survivors may help you "move on."

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Thanks you ! I am registered for this support group meeting tomorrow

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@aardvark2118

Thank you for sharing. I’ve not figured out how to compartmentalize any if this. Maybe it’s too soon to expect much. The physical in all of this was the easy part. The fear is the worst part. I hadn’t realized until recently how much I had benefited from the support of the therapists during radiation and now that is ending. One of the biggest fears if that of no longer doing anything proactively to prevent a recurrence . My final brachytherapy is Tuesday and then it’s up to me to monitor fir signs and symptoms . Yes I do have follow ups with mds but these past months I’ve just needed to show up fir appointments and pretty much do as everyone said as they were keeping track of everything. Now it’s up to me. See my gyn Onc in September and hoping I get more info on plans going forward I’ve realized how much I’ve been holding in these months so as to not worry others. I can’t explain why sometimes I just want to cry so I’ve held all of it in and now it’s slowly escaping. I’ve tried to explain my fears but am told I should be happy the treatments are over - and I am but still scared. Thanks for listening (or reading!)

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Hi If it's any consolation it's been 30yrs since I had cancer, treatments etc. Although I have ongoing issues (radiation damage to bowel) I have had ongoing fears daily. With every twinge or sore body part, I think , has it come back?? This is a normal fear. Some people seem to be able to let it go but some of us can't. Maybe if you have a great GP or good friend to talk to. Sometimes once you actually say your fears out loud you may feel your burden lift. We as survivors need to move forward, although never easy, but we do have a 2nd chance here. So try to find a charitable friend ok?? Or I am here to if you need. Take care Donna from Australia

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My journey is a little different than most. I had chemo and 35 radiation treatments that ended in December 2018 for vulvar cancer. Everything was going along pretty well until I found another lump in August of 2019. I had a radical vulvectomy in September 2019. I am very grateful that it was not cancer, just scar tissue. My oncologist/gyn is very cautious and proactive, that’s why he did the radical.
We should all know we are at a higher risk for breast cancer and other types of gyn cancers. We also need to be our own best advocates. We know our bodies better than anyone else. I guess my point is there is always the fear of recurrence and the unknown, but if we are proactive in our health, go for our 3, 6month or yearly exams with the oncologist, have our yearly mammograms and listen to our bodies, we can all get to the next steps in our journeys and get our lives back. There will always be bumps in the road and detours, but at the end of the day, we all are survivors. You’ve got this!

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@dor64

Hi If it's any consolation it's been 30yrs since I had cancer, treatments etc. Although I have ongoing issues (radiation damage to bowel) I have had ongoing fears daily. With every twinge or sore body part, I think , has it come back?? This is a normal fear. Some people seem to be able to let it go but some of us can't. Maybe if you have a great GP or good friend to talk to. Sometimes once you actually say your fears out loud you may feel your burden lift. We as survivors need to move forward, although never easy, but we do have a 2nd chance here. So try to find a charitable friend ok?? Or I am here to if you need. Take care Donna from Australia

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Thank you! It does help to know these fears are normal. Hopefully with time fears will recede. Thank you again!

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@wheaton

My journey is a little different than most. I had chemo and 35 radiation treatments that ended in December 2018 for vulvar cancer. Everything was going along pretty well until I found another lump in August of 2019. I had a radical vulvectomy in September 2019. I am very grateful that it was not cancer, just scar tissue. My oncologist/gyn is very cautious and proactive, that’s why he did the radical.
We should all know we are at a higher risk for breast cancer and other types of gyn cancers. We also need to be our own best advocates. We know our bodies better than anyone else. I guess my point is there is always the fear of recurrence and the unknown, but if we are proactive in our health, go for our 3, 6month or yearly exams with the oncologist, have our yearly mammograms and listen to our bodies, we can all get to the next steps in our journeys and get our lives back. There will always be bumps in the road and detours, but at the end of the day, we all are survivors. You’ve got this!

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Thank you! Yes if nothing else this has taught me I have to speak up which isn’t always easy for me but I’m getting better at it! Thank you again!

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