Community Voices

just saying hello

I joined this site a month or so ago, I think, but I haven't been very active (here or in general!)

I've been struggling since summer 2020 with unexplained symptoms, which naturally are pretty non-specific, and a lot of unhelpful tests.

I was diagnosed in Jan 2021 with a rare form of cancer (goblet cell adenocarcinoma of the appendix) and I was incredibly lucky to be treated by one of the top specialists in the country. I had surgery in March '21 to remove all the cancer (said to be fully successful) and receive a treatment called HIPEC which should have killed off any microscopic cancer growths. I then went through a relatively brief course of adjuvant systemic chemotherapy (thought to lower the likelihood of recurrence, which is high in this disease even with optimal treatment).

I have been declared "NED" (no evidence of disease) since then, through multiple imaging scans--CT of chest/abdomen/pelvis every 3 months!--and bloodwork (this is not conclusive; the only conclusive way to determine if I have a recurrence would be exploratory surgery, and it's Not Done).

The problem? I'm not better. The symptoms that sent me to the doctor in the summer of 2020 and got progressively worse are still here. Some of them are still getting worse. Some of them have invited friends.

The oncologists say it doesn't sound like cancer or lasting effects from treatment (which was brief in relation to many patients'). Most of the other doctors I see say it must be a lasting effect from cancer treatment, or that it's depression and anxiety. My psychiatrist says it's not depression or anxiety!

Living every day with the uncertainty and the pain of not knowing what is going on with my body and WHY and what will happen next is torture. I already struggle with feeling like I'm not in control of a lot of things (and honestly, many of us aren't) but this is just one more huge thing I have no control over. It has no name. No usual course, no treatment, no prognosis. I might wake up tomorrow and be back to how I used to be. I might wake up tomorrow and be paralyzed. I don't know.

I DO have some lasting effects from the cancer treatment--mostly issues resulting from the major abdominal surgery--but I feel like I could deal with those so much more easily if I didn't have all these other symptoms that I'm told are not related weighing me down and holding me back.

And whenever these doctors mention that it's anxiety, I wonder, what exactly do they mean by that? Should I NOT be anxious about the fact that my body is falling apart and no medical professional can explain why? Should I NOT be anxious and upset that my symptoms are being dismissed and written off, just as they were in 2020, and I ended up having cancer? To me it seems like anxiety and concern are pretty warranted and not pathological.

And, of course, I was told the same thing in 2020--maybe you're just anxious, or you're depressed, or the medications you're taking for anxiety and depression are causing these issues. It's the same song and dance now, and I feel like I'm back to square one after my journey through cancer hell.

It seems so unlikely that a rare cancer at a fairly advanced stage was discovered incidentally, but that may have been exactly what happened, in my case--either that or this IS all related to cancer, but no oncologist seems to know how or why, even the ones who specialize in it!

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Community Voices
Community Voices

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