PTSD and fear

Hi, Wallan -

I surely can relate to your fear and the PTSD. FWIW, I think it's perfectly reasonable to feel both, given that you had a recurrence just a few years ago which probably re-set the clock on your original trauma and most likely exacerbated it as well. Of course, being reasonable doesn't make it any easier to deal with.

I've fairly recently started meditating, using a variety of on line sources. Right now, I'm finding Tara Brach's works most helpful. It's helping diffuse the intensity of the response I experience when dealing with any of this stuff - USs, MRIs, etc. It's not 100% but at least I can make the appointments on the phone without freezing up and/or getting ill. I'd tried this stuff several years ago and got nowhere, but apparently I'm now ready for it, fortunately. Perhaps something of that nature could help you while you're waiting for your group to start? Or possibly you could get a private session whilst waiting for the group?

I would think that the terror is that, once again, the beast is breathing over your shoulder and (to mix a metaphor) you don't know whether it's in the car with you or just in the car next to you making faces at you through the window. Either way, all your fears, all those extremely difficult experiences, are dredged up yet again. Maybe you're feeling as though you've gotten through it twice but might not be so "lucky" this time? Maybe you're feeling worn down by the on-going emotional and physical effects. Maybe it's both. If you can, try to give yourself something to dispel the fear, even if only partially and only for an hour or two. Bury yourself in a page-turner of a book, stream a comedy (or 2), binge watch some shows. Board games and card games are great if you've got people to play with, otherwise crosswords or Sudoku can give your brain a break. It's January, so getting outdoors might not be an option but consider it. Or ice-skating? Be kind and considerate of yourself; do what you'd do for a friend going through the same thing. Revel in your Arimidex break, too. As you start getting the various issues sorted out you'll probably feel some of the terror receding. I certainly hope so. In the meantime, sending you hugs and warm thoughts. In solidarity - Hopeful

Wallan,

I feel your fear. Sometimes I just don't think that I want to spend the rest of my life worrying about every single ache and pain. Last week I went to my surgical oncologist for check-up. This month is 4 years since my diagnosis and three years of clean bill of health. They freaked out over what I thought was scar tissue from DIEP reconstruction and fat grafting. They performed a needle biopsy of what is more than likely fat necrosis. He even showed me the gunky fluid in the needle, but me being me, I am getting my "affairs in order." I need serious help. I talked with a counselor a few times, but the only thing that I think might help me would be alzheimers so I could forget cancer. (No disrespect intended to the sufferers of that awful disease.)

I am suffering now waiting for the results. Clonezapam is helping some. I have been chanting Fat Necrosis all weekend.

Thanks for bearing my rant.

Wallan, yes. I am 10 years out from inflammatory breast cancer. As far as we know, I'm cancer-free. (There are hints I may not be...but modern medicine does not pick up on "hints," so I wait for more unambiguous symptoms.)

What gets me is that for a year or so I've had this strong, strong urge to get my affairs in order. Pare down the junk in my life--books, knick-knacks, clothes I'll probably never need to wear again (retired, now, after facing similar job discrimination), etc. It scares me a little, because i wonder if this is my "higher self" knowing I'm going to recur and die soon.

Similarly, just as you say, I am trying to wrap up projects that I've had on the burner for a long time, and I'm putting off new ones. The biggest one is, the last of my dogs died more than a year ago, and I want to get another one. But I keep thinking, "What if I recur and die? Who will take of the dog, if I get another one?" Yet I really would like to have another dog....

Brenda

I saw this in my inbox this morning and needed to jump on. In January I "celebrated" 2 years cancer free (the day of my breast cancer surgery) . I am having a lot of bone pain, lower legs and back and continued pain in the area of my surgery. Yesterday I had a bone scan and today I am scheduled for a mammogram. The technician said she noticed a difference from my last scan but could not elaborate. I don't think they should say anything! Of course after hearing that I immediately went to my dark place. Did she see a sign of cancer on my bones? I barely slept last night due to my anxiety over the possibility of the beast's return.

Later today I am scheduled for a mammogram. When I saw the breast specialist/surgeon last week I mentioned the ongoing pain in the surgery area and that I felt something there around Christmas. The thing I felt was not a lump but more of a thickness. She though it may be some scar tissue and did an ultra sound of the area. "Nothing of concern" was spotted and she recommended I get my mammogram done. She ordered a diagnostic which will be done at the breast center today. Since my diagnosis in November of 2017 I have not had a clear mammogram. I have had a few biopsy that revealed what was seen on the film was a fluid filled cyst and a calcium deposit. I can't even describe the feelings I had after hearing they saw something on the mammogram and ultrasound.

As I write this I feel my heart pounding. Here comes that familiar anxiety...

I am so grateful that there is (albeit slowly) recognition of PTSD and multiple other after effects of Breast Cancer. At 34, I had MBC. Cancer in right breast and it had spread to all the lymph nodes. Prognosis from Surgeon and Oncologist was dire. This was back in what I call "The Dark Ages of Breast Cancer Treatment". There was no testing or targeting negative vs positive - nothing specific for treatment. Therefore, I was blasted with horrific chemo, and even more horrific radiation. They didn't have drugs to boost your immune system, so I ended up with Pneumonia. During a bad coughing, I broke 3 ribs. Bones were so compromised they were as brittle as a 90 year old's bones. Chemo destroyed my bladder. The radiation damaged my skeletal system. Over the years I've become 'crooked'. My right side is lower than my left. My collarbone on the right side is protruding outward. These are just a few of the physical damages. Fast forward to 63 and an aggressive cancer found in left breast. The local Pathologists couldn't determine the type of cancer (HR neg vs pos) and Oncologist wouldn't start treatment until this was determined. I had to pay to have specimens sent to USC Keck Center in LA. A Pathologist there was able to identify type of cancer. My second rodeo with chemo almost - literally - killed me. My Platelet count was 2. Normal is between 200-400. I had the worst reaction to one of the chemo drugs that the Infusion Nurses and Oncologist had ever seen. The bone pain was beyond description. I couldn't eat, sit, sleep, walk, function in any way. The only thing I could do was cry and pray for death. My Oncologist prescribed large doses of Oxy for the pain. Didn't faze the pain so I had to 'gut it out'. There were many more horrific incidents that I won't describe now, but all of this drove me to daily consider suicide. When I have appointments for check up, I feel like I'm falling down that same rabbit hole. Trying to mentally prepare for the pain of blood draws (my veins are worse than a drug addict's) sends me into another session of fear and sadness. PTSD? You bet. I'll be a victim of PTSD until I die. My HMO insurance only pays for 10 sessions. This is laughable and hardly a way to live a life.

Brenda - My husband and I foster/adopt senior dogs. That is one of my exit strategies - if I cannot care for them, at least they could go back to rescue. Seems like for everything I do, I have to have an exit strategy. We need new furniture, but what's the point? It would be nice to paint the hall, but nah, we'll let the next owners do that. My prognosis is good but still I go around like I have one foot in the grave. Maybe because the veil was torn and I KNOW time is limited. It always has been. The difference is that I KNOW now.

Thankfully the panic attacks are gone for now. I shudder when I think about how terrified I was back then. My brain changed eight years ago, and this is the new me. Strangely I think one of the things that helps is that I still hang out here. Instead of running away, I read about the struggles, progression, and all the scary stuff. Somehow being immersed in it makes it more clinical, with less room for surprises. I guess we just keep on keeping on the best we know how.

I can totally relate to this post. I have anxiety outside of cancer and this time it's much worse. Stage 1/Grade 1 tumor in 2012 and have been on tamoxifen. I was told this I would most likely never have to worry about this disease again. A new primary in the other breast while on Tamoxifen in July. While my second cancer was very treatable, it rocked my world. In my mind, Tamoxifen was my safety net. Now, that it didn't or stopped working, I feel so vulnerable and anxious. Just started mindfulness activities and other things to help. Hoping to return to my "normal" level of anxiety soon. Exercise also helps me. I just need to do it! Hang in there.

Hi - an upstream poster mentioned that PTSD can also impact family members and it's gotten me thinking that I need to have a conversation with my husband. I started seeing a therapist almost immediately after I finished treatment because I knew (thanks to this site) that 80% of breast cancer survivors suffer PTSD symptoms and I also know that the earlier you address the issues and the earlier you find your own coping skills, the easier it can be.

I did 6 weeks of CBT (Cognitive behavioral therapy) and it was extremely helpful. CBT doesn't aim to "cure" your mental health issues so much as allow you to recognize negative patterns and develop strategies to put you in a better head space.

Now I'm thinking my husband could use the same. He's just blocked the whole experience. For example, he was preparing his year end financial statements for his small business and noted that profitability took a nose dive January to June, bottomed out over July - August, and is just now recovering, and he was trying to understand why. I reminded him that I started chemo in December, had surgery in late May, and finished radiation in August, and that during treatment he essentially took over 90 - 100% of the shopping, child care, driving, cooking, cleaning, etc., I got a genuine blank stare from him, and then avoidance for the rest of the evening. Nope, not even going to consider the impact of my cancer and treatment! Nope, Nope Nope!

Just wanted to tell you that I can relate to your scare about fat necrosis. I found a lump in my breast after all of my treatments and went into panic mode. It was far necrosis but I have no memory of anyone telling me that this could occur. Every time I have a mammogram they want to biopsy it. My oncologist will not do that because he measures it regularly and there is no change. It is hard to live worrying about every ache and pain. Unfortunately my cancer did return last May and I have metastatic breast cancer so now I worry about where it will spread next but my fat necrosis is unchanged and I don’t even think about it anymore. I hope that’s what yours turns out to be

Wallan

It could be that your SIL feels that since her cancer was a low stage/grade, she CAN'T do anything but be cheerful and act like hers was nothing compared to yours. She might feel that it would be disrespectful to you to do otherwise. Or she might have a one & done mindset. I've been stoic and cheerful but I'm not doing it TO or AT anyone. I'm just kind of private about stuff like that. I had one brief discussion with DH about the time of my 3rd surgery in as many months, saying I was surprised he was handling things so well (he's the emotional one in our family). He told me I hadn't seen him when he was alone in the car and had to pull over and have crying freak-out sessions. My response was to tell him I was glad to know he cared, but thanks for not doing it in front of me. I guess he learned at one of the doctors' appointments about one cancer or another, when he kind of moaned when I was told about that cancer, and I elbowed him in the gut and told him to shut it. So although I can be cheerful and stoic most of the time, I don't want to have to handle DH's or anyone else's emotions. We're all wired differently, and I don't see how you can expect your SIL to react the same way you do.

When I had my first cancer back in 2008, I was a little more freaked out (now it's just, "Oh, really, well let's get rid of it!") and wanted more support. I looked forward to returning to work and, frankly, getting some comfort and attention from my friends there. My first day back, I found out one friend had found out she had terminal, advanced cancer. A closer friend had a tiny, low-grade breast cancer, but wanted a ticket to PINK PINK PINK CANCERWORLD, and was going to be the noisiest spokesperson ever. So what I did was not say one damn word about my own cancer and hysterectomy, because I'd have been embarrassed to complain compared to what the first friend was going through (she died a few months later), and I was embarrassed FOR the other friend and didn't want to be associated with her stupid cancer festivities. I did all my mental recovery online on a different cancer site. And I've done most of my mental recovery here for the more recent rounds. My safest place is a friend I've reconnected with, who has been living with stage 4 ovarian cancer for nearly a decade. She starts another chemo next week. We text a lot, about many things, but she's the one I can share my weirdest thoughts with, via text (she lives in another state). I'd encourage you to find someone like that, if you can. She's a "Cancer Angel" to a few other women, not sure how that started, but perhaps ask at your oncologist or breast center if they match people up? I could never vent to someone in person, but I love being able to do it via text. If your needs are more face-to-face, see if there's a survivor group that meets, or a sponsorship program, maybe. Good luck and hugs to you.

Wallan

👍❤

I love the term "cancer angels" I do so appreciate a place like this to share experiences and support one another. It is so true that many in our worlds just don't get it. The other thing is a diagnosis is so individual, these centers claim to care about your individual cancer when the reality is we are lumped into a standard of care based on stats. How is that individual? I do understand now all the work involved that has led to better outcomes/treatments with this particular disease, but to most of us a better prognosis, or having more treatment options available does not change the initial trauma of getting diagnosed with cancer.

When I am having an especially fearful day I try to repeat my stats to myself. Over and over it helps but not all the time. I get anxious 2 weeks before an appointment or test. I feel like a special needs school kid as I am still having trouble passing these tests!! I get through it, and I am trying to look forward to a time when I can be less fearful, and done with this treatment. I don't know if time will help, but it seems to with some folks. That gives me hope.

Unfortunately, me and my family will eventually be going through another trauma of losing a loved one to lung cancer. It going to suck big time, yet we are making the best of everyday, because there is no other choice.