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.

@aardvark2118

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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Keep positive. All we can do & enjoy your 2nd chance.

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@aardvark2118
I totally understand your fears. I finished 28 external and 3 brachytherapy radiation treatments right before Christmas last year for a reoccurance of Endometriod Adenocarcinoma. I was just 7 months out from my complete hysterectomy when the reoccurance was found. I see my gynecological oncologist every 3 months and my radiation oncologist often as well. Those visits are terrifying for me. At my last one the NP found a suspicious area that she decided to biopsy and those days waiting for the results were long and worrisome. It turned out not to be cancer, but still was abnormal so they will likely do another biopsy at my next appointment. I had a PET scan 6 months after my last brachytherapy, but was told that would likely be the last because they aren't recommended and insurance fights them because of the cost. My treatment plan didn't involve counseling or even a nutrition plan which surprised me. Care is so different from one provider to the next.
The month after my last treatment I was so lost. I guess you get so used to all the appointments and tests that once they are over you are not sure what to do with yourself.

It is a lonely journey for sure.

Take care!

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@cmb2022

@aardvark2118
I totally understand your fears. I finished 28 external and 3 brachytherapy radiation treatments right before Christmas last year for a reoccurance of Endometriod Adenocarcinoma. I was just 7 months out from my complete hysterectomy when the reoccurance was found. I see my gynecological oncologist every 3 months and my radiation oncologist often as well. Those visits are terrifying for me. At my last one the NP found a suspicious area that she decided to biopsy and those days waiting for the results were long and worrisome. It turned out not to be cancer, but still was abnormal so they will likely do another biopsy at my next appointment. I had a PET scan 6 months after my last brachytherapy, but was told that would likely be the last because they aren't recommended and insurance fights them because of the cost. My treatment plan didn't involve counseling or even a nutrition plan which surprised me. Care is so different from one provider to the next.
The month after my last treatment I was so lost. I guess you get so used to all the appointments and tests that once they are over you are not sure what to do with yourself.

It is a lonely journey for sure.

Take care!

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Thank you for your response! I’m hoping to stay busy fir the next month to make up fir the lack of appointments 😀 hopefully the fear recedes. Take care!

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I need to rant about this, so here goes: The roads in my area are littered with billboards advertising hospice, most of which show a scarf-clad woman clearly meant to represent a cancer patient. Seems like every time I manage to "compartmentalize" my cancer anxiety, one of these pops up in front of me.
Why such saturation advertising for this service?
One day I counted seven within about a twelve mile radius! Wish I could sue the company for mental distress!
Thanks for listening.

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@esikora

I need to rant about this, so here goes: The roads in my area are littered with billboards advertising hospice, most of which show a scarf-clad woman clearly meant to represent a cancer patient. Seems like every time I manage to "compartmentalize" my cancer anxiety, one of these pops up in front of me.
Why such saturation advertising for this service?
One day I counted seven within about a twelve mile radius! Wish I could sue the company for mental distress!
Thanks for listening.

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Hello. I agree we need to move away from the image of the “cancer patient “ as all it does is scare people. The same with movies and their depiction of cancer patients. Yes some chemo treatments make people sick but with new treatments and options to manage side effects we need to show that you can manage chemo symptoms My two cents!

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@esikora

I need to rant about this, so here goes: The roads in my area are littered with billboards advertising hospice, most of which show a scarf-clad woman clearly meant to represent a cancer patient. Seems like every time I manage to "compartmentalize" my cancer anxiety, one of these pops up in front of me.
Why such saturation advertising for this service?
One day I counted seven within about a twelve mile radius! Wish I could sue the company for mental distress!
Thanks for listening.

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you can add to that all the ads that pop up on the phone and email, etc. Drive me crazy...some totally inappropriate.

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My rant as a so far surviving cancer patient is about friends and family telling me how good I look every time they see me. The fact that I weigh about 30 pounds less than I started with probably helps and that my hair came back in n a nice wavy silvery shade of white. I guess @esikora 's comment about the "cancer patient" is what causes people to be surprised when you don't look like you are at death's door. But, unfortunately, how you look on the outside doesn't correspond with what is happening inside. I am 4 months past my last cancer treatment (stopped due to neuropathy) for metastatic cervical adenocarcinoma and my cancer is stable so far but, barring a miracle, I know it will return and I fear that looking good makes people think that I will be fine.

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Just checking to make sure everyone is aware of the Women of S-Teal online support group thru Mayo Clinic. I joined the group in 2021 and have found to be extremely helpful to be able to talk about and share all of the feelings and everything else about my cancer journey. Although writing is helpful, talking to women who have all been there is great. I have also learned a lot. Make it a great day🌼

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@cialonel

you can add to that all the ads that pop up on the phone and email, etc. Drive me crazy...some totally inappropriate.

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Agreed. I can't imagine who wants to see an ad for pre-planning your memorial service while playing games on your phone.

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@wheaton

Just checking to make sure everyone is aware of the Women of S-Teal online support group thru Mayo Clinic. I joined the group in 2021 and have found to be extremely helpful to be able to talk about and share all of the feelings and everything else about my cancer journey. Although writing is helpful, talking to women who have all been there is great. I have also learned a lot. Make it a great day🌼

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I agree! I joined fir first time this week and thought it was very good group!

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