PTSD - not really diagnosed, feeling ignored

I'm not sure I have many helpful pointers, but I wanted to say that you're not alone. Even the mention of bloodwork and having to sit in a dr's office fills me with dread, I hate it. And my yearly appointments (which I'm heading into now)? I'm a mess, and have been a mess about it since before Xmas. Driving past the hospital where I received my diagnosis is sometimes enough to make me feel nauseated. I start to get sort of flashbacks this time of year too. I see people say they plan something fun for their medical appointment days and I am here too paralyzed with fear to plan anything besides putting one foot in front of the other to walk in and out of the place (like I said, a mess). And I get angry. I am not myself.

I see some people describe the awesome relationship they have with their MO's or GP's and while my MO is taking care of me I hope, I barely have but a couple of minutes to talk to them before I'm out the door and there's definitely no time to chat about how I'm feeling about anything at all. So I've stopped expecting it. They are super busy dealing with those in intensive treatment, and I think they think I'm covered elsewhere. I'm sitting there quaking with fear waiting for test results and my GP looks at me like I have ten heads. (if you read back through any of my past posts, this is also the GP who looked at me and said "what, you need it now? when I asked for Ativan to help me through medical procedures).

Therapy didn't help me either, and I never bothered to give it a second try (although I still think I might sometime, with a different person). I knew I never had the right one when I expressed during one session, that I was fearful I was somehow going to "miss" finding a lump (because mine practically jumped out at me when I found it), and the therapist literally said to me "come on now" with this look on her face, that made it very clear this person didn't get it. And this was one who supposedly had worked with cancer patients previously. Blew my mind. She chalked me up to having "adjustment issues" post diagnosis.

So long story short, I dropped off the radar therapy wise/mental health wise, so therefore I've never gotten a diagnosis either when it comes to PTSD, and not to self-diagnose myself, but I know I've got an awful lot in common with it, because this is NOT just anxiety or feeling sad about things.

The ones who seem to get it the most are the nurses, or some of them. And people who hang out here, for the most part.

I agree with what NotVeryBrave said, maybe trying a new therapist might help. And go easy on yourself. I hope you are somewhere that does not have limited resources available to you (which is also an issue with me).

Re-experiencing is one of the domains of PTSD symptoms. There are other components of the official diagnosis, but whether or not you qualify for the diagnosis isn't really the important thing. The important thing is getting help for it.

The treatments with evidence that they work for PTSD and trauma-related problems really are therapy-based, not medications. While medications can help for short periods or for use only for certain infrequent situations (like scans), they're not a great longterm answer: either they are only modestly effective (SSRI's), they have serious longterm effects (antipsychotics), or they're really addictive (benzodiazepines). There are some things out there other than what I've listed, but they're not magic bullets. Please keep looking for a therapist, and don't keep asking your oncologist. If they've shown you they're not able to deal with that kind of problem, which it sounds like they've done, don't keep barking up that tree or they'll just think of you as "a problem I can't deal with." I don't think many oncologists have the time or inclination to address treatment-related mental health issues, even though they're common. It sucks for patients, but if you're the one needing help it's more likely to be fruitful to put your energy into finding help in ways that might be productive than to try to get a doctor to change how they practice medicine. The entire training process needs to be changed, and they need to be mindful of recruiting fellows into training who have some capacity to deal with the emotional stuff.

The practice where I got my treatment was also terribly flawed this way. Their social worker couldn't even give me a list of names of therapists. I found mine by calling around to find someone with openings who took my insurance, then just making an appointment and seeing if it seemed like they would work out. I've interviewed doctors before - I see it sort of like interviewing applicants for a job. I think about all the doctors I see like that. Therapists and doctors are not interchangeable - there are a lot of reasons some are better than others for a particular person. The therapist I found had a lot of experience with combat veterans with PTSD, and he totally "got it" about the symptoms I was having.

It's hard to look when you're not in a good place. If you have anyone in your life you are comfortable asking, ask. Ask as many people as you can. Ask your primary care provider. Check online. Look for providers who advertise that they work with veterans or people who have experienced trauma. Think of first visits as interviews, and don't go back to see someone a second time who doesn't seem to get it. I did therapy when I was much younger, and I had a terrible first experience. I kept seeing the first one I tried because I didn't know any better, and she was awful. I wasted way too much time and money with her before I figured out it was never going to work out. I was pickier the second time around - had to "interview" about 5 people before I found one I could work with, but she really, really helped me.

I'm sorry to hear that you have been bumped up to Stage 4. Don't lose hope. There are a lot of treatments available, even at Stage 4. I'm glad your feeling less depressed. I would definitely consider seeing a psychiatrist. They are the medication experts and you would benefit from having them on your team, ESPECIALLY  now.  I hope you can find some complementary treatments that help. For me, that would be massage. Massage kept me from losing my  mind during chemo. It's expensive, but it was worth it for my mental health. 

When I was first diagnosed, my therapist (psychologist) told me that going through treatment would further trigger my depression and anxiety at different points through the recovery process. She also said it could trigger ptsd. Boy, she was right. First, the nurses in the hospital had no idea how to handle a patient with high levels of anxiety. This was worsened by the hospital not dispensing the drugs I took daily to manage my depression and anxiety. Abruptly stopping this drugs causes problems. This was necessary due to drug interactions with pain killers. My PS and Oncologist were very supportive and didn’t make me feel belittled because of my depression and anxiety unlike the hospital staff.

I hear that many of you don’t find much benefit from talk therapy. It is difficult to find that person that is right for you. It’s hard to accept that talking about your feelings does not make those feelings go away. The benefit I get from therapy, is having a safe place to talk about how shitty things can be - I don’t want to have more surgery, the trauma of seeing my body disfigured. I do feel better after talking because I have let it out and given allow my self to be ok having these feelings

Having had major depression since 18, I have been on and off meds my whole life and been in therapy for most of it. It is physically and mentally hard starting and stopping these medications. I found it takes up to 6 months to get over the side effects and really feel the benefit of meds. I recently had to change my depression meds, I was a wreck stopping the old and starting the new. It isn’t an easy process especially if you are already dealing with physical trauma from cancer.

My family Dr has given me Ativan to take when I have to get medical tests done. It’s a life saver. Otherwise there is no way for me to get an MRI, CT scan etc. on a daily basis I take clonazepen at night to offset the insomnia my depression meds give me and to manage overall anxiety. Even with all of the support I have from friends, family and my therapist, I still break down from overwhelming sadnesses. My husband sits and listens, let’s me cry and provides a hug.

I feel fortunate that I had an emotional support team in place long before I went through cervical cancer last year and now breast cancer. Don’t give up. Be your own advocate, ask from Xanax, Ativan or whatever anxiety meds can help you through testing, Dr visits and personal fears. Physiologists are better at listening and giving you tools to understand your emotions and give you back control. Psychiatrist are necessary for getting medications, discussing side effects etc. both Drs are needed. The first one you meet with may not be the right fit, but when you get the right team, it does so much to help navigate the fear and sadness that comes with cancer.

mila3, Do you have cancer?

I hear that many of you don't find much benefit from talk therapy.

I don't see most of the discussions on this board supporting this assertion. Remember that people tend to post when something doesn't work or isn't resolved. We tend not to post when there isn't a problem or things are going well.

I told my doctor I have bad dreams every night. He said that is not a side effect of radiation therapy. My radiology tech, however, suggested it was a normal reaction to stress. Last night i heard on a podcast that nightmares are not normal. They are a marker for PTSD. The general population has 3% of dreams that are bad, and the VA reports that PTSD patients experience 52-96% compared to 3%. And me? 100% of my dreams are bad. Apparently my PTSD predates my Cancer. i'd say before radiation therapy I was running more like 95-96% of my dreams were bad. . . gee whiz. I never knew other people had good dreams all the time. For me a good dream is such a rare event. How could I have gone 5 decades without anyone ever explaining this to me? I guess it's because I don't have insomnia - just bad dreams.

I also learned the VA suggests that during my waking hours I write down the dream and re write the ending, over and over again until my brain subconscious accepts the amended (better ending). I'm not saying I tried it yet. Just offering this to anyone else who might like to try. I think I'll start today.