I'm 34, diagnosed with stage 2A breast cancer at 33. Since treatment ended, my life has continued to be all about doctor appointments (fertility treatment, follow up appts/screenings) and I find that none of my doctors ever seem to consider my quality of life or how treatment might affect my mental health. I think an outsider looking at any one of my interactions with doctors would think "well that doctor has great bedside manner!" because they gush about how much they care, and how they are working so hard to support me and help me manage my symptoms. But there have been so many times where I reached out to them for help and got nothing, or asked questions and was given "tough love" or just dismissed entirely. The repeated betrayal has left me not able to trust any medical professionals. Minor things like have my blood pressure taken, or giving 1 tube of blood has become a nightmare for me and I have started wondering if risking medical problems might be better than subjecting myself to more appointments. I used to desperately want children and now I think "if I get pregnant I'll have to see doctors, maybe it's not worth it, I can't trust them to care for me or my baby". I constantly question, are they running this test just to check a box saying they did everything they're supposed to and can't be sued later? Or does this test really need to be done? To them each test is so minor but to me it's traumatic. When I explain this they get exasperated and act like I'm just being difficult. Then in the next breath they tell me how much they empathize.
My chemo team dropped the ball, telling me I had no other anti-nausea medication options when in fact, there were several. I think because I wasn't throwing up, they saw me as doing fine, even though I was begging them in tears for more medication. It wasn't until I got really angry halfway through treatment that those options suddenly became available to me. I suffered needlessly for weeks.
Before surgery it was like pulling teeth to get my surgeon to tell me anything about recovery or how to mentally prepare. After pestering her, she reluctantly admitted my chest would be numb forever and that's why pain wasn't an issue during recovery. I guess she had wanted that to be a fun surprise for me when I woke up. I received no advice about how to adjust to life without a breast. Haven't a million women been through this? No one at this major cancer center has made a pamphlet about it to give to patients?
My follow-up mammogram at the cancer center was rushed in the name of efficiency. It was much more painful than my previous mammogram where the technician had taken her time, and I felt like a cow being prodded and pushed around. The technician showed no concern for my discomfort.
The fertility doctors weren't honest about my chances of having kids and I realize now that I put myself through weeks of hormones and lab tests (not to mention lots of money) when it was never going to work. I had the AMH of a 45 yr old before I even had chemo, but all I was told was "well it's low but IVF might work". It wasn't until I requested my medical record that I saw how low it really was. To them the IVF treatment was no big deal so it was worth doing, but they mislead me and stole away my chance to make an informed decision. My new fertility doctor rushed through the consultation and he and his nurses are annoyed by my questions. When I told a nurse I was trying to be informed to make the process less stressful, she said in a rude tone, "well maybe you should be talking to someone about your stress". Not her problem I guess. If it relates to mental health doctors don't seem to want to discuss anything, as if that's completely out of the realm of medical care. I keep making efforts to be polite and patient with each new person, but it kills me when it's not reciprocated and I feel reduced to a dog at the vet. How do I explain that I want to get pregnant but not at the expense of my mental health? One doctor's response to this was "well maybe you should think about whether you can handle pregnancy". That's not helping me, it's just one more twist of the knife.
I look ahead and see nothing but follow-ups, mammograms, MRIs, ultrasounds on my ovaries, prophylactic breast/ovary removal, the donor egg process, not to mention trying to cope with menopausal symptoms and the fear of early osteoporosis. My happy life just evaporated and I'm left with a life I'm just existing in, not enjoying. I'm so exhausted by the extensive research I have to do before every appointment, just to be able to ask good questions. And even though I do this, there are always things I didn't know to ask about and I get so angry with myself for not doing better research. I don't know how to simultaneously trust doctors with my life, but also protect myself from them. All I can think during appointments is "What aren't you telling me? and "Will I end up in a padded room because of your treatment?" I'm afraid that as soon as I'm vulnerable, they'll be dismissive and cold. It's happened with all of my doctors, so I don't feel like finding new doctors is an option.
Does anyone else feel this way or feel like they have PTSD from lack of empathy, being stuck with needles, etc? Any suggestions for coping or for communicating with doctors about quality of life issues? Sorry this was so long!