Tired and broke

Posted by Jane M. @jane, Sep 15 8:34am

I'm struggling with the five year follow-ups. I'm having constant pain and GI issues, as well as some others. My follow-ups consist of CA125s and a CT scans, and not figuring out what is causing the pain besides the scar tissue they assume is in my belly. I'm going broke with the scans even with medical coverage and living on one income. I'm at a point where I don't want to pursue this anymore. Both times I've had cancer (ovarian, and then endometrioid malignant adenoma), it was a complete surprise where they went in and thought it would be nothing but it turned out to be cancer. I can't deal with any more surprises like that in my life and don't want to seek any more care. How do I overcome not wanting to know when I continue to have the same symptoms I had when I was originally diagnosed both times? I'm frustrated and giving up on followups at this point.

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

Health issues can be very costly even with insurance and co pays etc. I'm saddened for you. Keep hoping and praying for positive outcome. Perhaps they will find the problem one more time and may not have to check for any cancer checkups. I'm just on my second follow up this month after my hysteroctomy after Adenocarcinoma dianosis.diagnosis.. I am on that journey too.🥰

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@jane. This is such a difficult situation you describe. When were you diagnosed with cancer – how long ago? I'm wondering if your co-pays and deductibles were not so expensive would you be willing to go for these costly follow-ups? I know that isn't your situation but it's a good question to ask yourself. Or, health care costs aside, perhaps you don't want the follow up exams anymore? And if so, what is the reason? Do you want to avoid knowing about the possibility of cancer showing up?

You have ongoing pain in your abdomen that I imagine is just awful to live with. I've heard that adhesions from previous surgery (scarring) can cause pelvic and abdomen pain that can be relieved through treatment. But I haven't experienced this. I'm only telling you what I have heard from friends. How are you dealing with that much pain on a daily basis? Does it affect your sleep? Your work, your family or your social life?

Lots of questions here. I don't know that a person can overcome what you've written about. I can tell from what you wrote that you fed up with the expense, the pain, and your past cancers. I imagine you are overwhelmed.

What does your family doctor advise? Ultimately it's your decision what you'd like to do however in your place I'd sure want all the medical advice I could get before making a decision. We will support you here at Mayo Clinic Connect with any decision you make.

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@rose53

Health issues can be very costly even with insurance and co pays etc. I'm saddened for you. Keep hoping and praying for positive outcome. Perhaps they will find the problem one more time and may not have to check for any cancer checkups. I'm just on my second follow up this month after my hysteroctomy after Adenocarcinoma dianosis.diagnosis.. I am on that journey too.🥰

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@rose53. I just had my follow-up a few weeks ago and there was nothing new that showed up. I breathed a sigh of relief. You've been doing great and so I'm hopeful that your follow-up will show nothing significant. ❤️

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My first diagnosis was the ovarian cancer in 2008, which was a total surprise and ultimately ended up destroying my marriage about 8 years later due to always feeling pain with intimacy. At that time I had no chemo or radiation for follow up and was told because it was stage 1A, there is no follow up needed. In 2017, only 6 months after the divorce was final, I became sick again and found out it was the endometrioid diagnosis. During the years between, I had more than my share of abdominal troubles and I ask myself if the newer diagnosis should have been that much of a surprise. In addition to the abdominal pain there's been pain in my back that makes sitting for hours at a desk excruciating, yet I need to continue to work. I have the best benefits my employer offers in a 3 tiered selection of health coverage, yet I am still recovering financially from the divorce and have little prospect to allow for retirement anytime soon after 32 years with this employer. It would be difficult to move to another position that pays what I am making now and reluctance to go is based on my current financial state and the state of the current economy. I'm exhausted and it's becoming a rather depressing situation that I feel I can't bring up to anyone at this point. I appreciate everyone's input. I'm still grateful for every day I wake up. It's the overwhelming feeling of having to have more visits and tests with little to no relief of the pain that is dragging me down.

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@naturegirl5

@rose53. I just had my follow-up a few weeks ago and there was nothing new that showed up. I breathed a sigh of relief. You've been doing great and so I'm hopeful that your follow-up will show nothing significant. ❤️

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Good news.❤

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@jane M. Jane, I've been through a divorce and remember the years and years it took me to figure out how to catch up financially. Like you, I wound up working longer and at a job I grew to intensely dislike when it was difficult to move anywhere else due to my field. I did not have children which made the decision all my own. Do you have children?

None of us are medical professionals. I can share what I've learned about gynecological cancer. I did a lot of reading after my uterine cancer diagnosis. I learned that I was at risk for a recurrence but also for other primary cancers in other places in my body. This has put me on edge since the first diagnosis much as it did with you. I never did settle back down into some pre-cancer state of mind and I've since learned from a psychologist who specializes in oncology that this is very "normal" for us.

Since the ovarian cancer you had in 2008 was Stage 1A I understand why your oncologist said you did not need any more treatment at the time. What did your oncologist say about the type of endometrial cancer you were diagnosed with in 2017? The ovarian and endometrial cancers were likely different kinds of cancers (there are so many kinds of cancer) so likely not related but that doesn't make you feel any better. It's still cancer and it's very scary. I think you did everything right. You went back for your follow-ups Barely more than 10 years later you had another cancer. And now you are experiencing abdominal symptoms and back pain and you are doing everything right. You aren't avoiding going to the doctor and making your anxiety even worse with avoidance You're going full steam ahead and doing what you need to do. And you're taking your anxiety along on that stormy boat ride. Think of this way. While the storm is swirling around you, the boat is pitching this way and that you can take care of you even if you can't stop the storm.

When is your next medical appointment? Even though you feel you've had enough I'm hoping you'll keep following up until your doctor figures out how to help you.

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@jane

My first diagnosis was the ovarian cancer in 2008, which was a total surprise and ultimately ended up destroying my marriage about 8 years later due to always feeling pain with intimacy. At that time I had no chemo or radiation for follow up and was told because it was stage 1A, there is no follow up needed. In 2017, only 6 months after the divorce was final, I became sick again and found out it was the endometrioid diagnosis. During the years between, I had more than my share of abdominal troubles and I ask myself if the newer diagnosis should have been that much of a surprise. In addition to the abdominal pain there's been pain in my back that makes sitting for hours at a desk excruciating, yet I need to continue to work. I have the best benefits my employer offers in a 3 tiered selection of health coverage, yet I am still recovering financially from the divorce and have little prospect to allow for retirement anytime soon after 32 years with this employer. It would be difficult to move to another position that pays what I am making now and reluctance to go is based on my current financial state and the state of the current economy. I'm exhausted and it's becoming a rather depressing situation that I feel I can't bring up to anyone at this point. I appreciate everyone's input. I'm still grateful for every day I wake up. It's the overwhelming feeling of having to have more visits and tests with little to no relief of the pain that is dragging me down.

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I am so sorry to hear about your very long and troubled history will cancer and other health challenges. You are right: it can be so overwhelming to continue visits and/or treatments and find little relief. I am wondering if you've been able to access any other support services, like alternative therapies for pain, or counseling, either through your health care plan or through community offerings. Everyone has different needs, as well as preferences, but sometimes therapies like support groups, talk therapy, massage therapy, acupuncture, etc., can offer some relief. I'm glad you're here in this group, and I also hope you can find someone to talk to in person about these issues, because that could offer some support, too. I wish you the best.

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