Emotional aftermath following breast cancer treatment

I am at the five-year mark post mastectomy, right side only, hormone positive both ER plus and PR plus, Lymphedema and right upper extremity that required a VLNT surgery, A failed DEP flap surgery, ultimately resulted in my chest, bursting open on the drive from Ohio to Florida and another surgery to quilt my chest shut. In addition to that, I am one of those rare people who have what is called anesthesia, awareness, and other words for me, mild sedation never works. I found out when I had my first colonoscopy done in my 50s. That doctor told me mild sedation doesn’t work for you, you are awake and you need to let everyone know that so you can be given sufficient sedation. I have told every surgeon and surgical team. Didn’t matter for the major surgeries because I get knocked out for those
And so far, the anesthesia awareness has not occurred for general anesthesia. But I have had three total, two following my breast, cancer, diagnosis, episodes, where I was aware during procedures. The worst was the implantation of my port. Somewhere around the five-year mark it occurred to me, that I was really really struggling emotionally with everything. Breast cancer, lymphedema, anesthesia, awareness, recurrence, add onto that every other issue that occurs as we get older. What I learned is that I have a significant PTSD condition probably have had some degree of it for a long time, but the cancer diagnosis, the complications, that occurred over the past five years, and the general process of aging and worry about recurrence add to that dynamic. So I saw specific therapy for PTSD with a psychologist in the winter. That was tremendously helpful, I stopped thinking and feeling like I should be able to fix this or it’s just go away. Neither one of those things is ever going to happen. Over the course of about two months and working with a psychologist, I was able to verbalize and re-verbalize, all of the stressors in my life, and for any of us with the cancer diagnosis, even if it’s not complicated by other issues, the cancer part of it is truly a trauma. I found it by revisiting it,, discussing it in a safe place help me diffuse , some of my reactivity. I still worry greatly about future procedures that will require mild sedation, generally, but I also feel greatly empowered and insisting that I have a face-to-face meeting days before the procedure, with the head of anesthesia and whatever hospital the procedure Will be completed and a firm plan and how anesthesia will be administered and monitored. Well, it is a low incidence condition, one to two people per every thousand, the anesthesia awareness in one years time happens to 30,000 people. That’s a low number, but that’s the amount of people that fill a small footballer baseball stadium and that’s a lot of people. so my thinking is that any and all of us who feel stressed at any point during our journey before during or after cancer to seriously consider the trauma component of the procedure, even when our outcomes are good. We’ve been through a lot and the future is always uncertain. I was very pleasantly surprised at how effective working with the psychologist from the PTSD and trauma angle really really helped me. It was well beyond a general counseling session with a social worker. I think it requires a higher skill set. Just my humble opinion.

@val97 you are describing me 8 months ago. After months of constant, intense fight or flight medical discussions & keeping those around me reassured, I was finally able to start getting back to a regular routine and exercising. It definitely made me feel more normal and in control.

It sounds like you already know to advocate for yourself, so I will only add that if the Tamoxifen crazies get too bad (especially during a big move/settle in ) see if your oncologist will reduce your dosage or have you take a medication holiday. I also have a very low Oncotype score, and when I was having issues, she had me take a 2 week holiday before starting on a lower dose. She told me “this is a marathon, not a sprint, taking some time off so you can get back in the race is more beneficial than getting to the point where you want to quit entirely”.

Good luck with the move and I do hope you find a good doctor at your new location.

And yes, this discussion board made me feel less alone too!

@val97 you articulated so well what so many of us feel or have felt. A big move would add to the disorientation. I think it takes 6 months to adjust to move, even without the cancer. Believe me the cancer will go on the back burner. I hope you can rest up and do some things you enjoy. Tai chi and art class helped me!

Yeah, that feeling of being done . . . I finally decided the whole thing was a journey with its ups and downs and I’m coasting now. Maybe feeling done takes a while. I’m almost 2 years post surgery.
You know, you’ve been through A LOT! It doesn’t matter what those around you think they know about what you’ve been through and where you are now. Take care of yourself, try to mentally walk away when someone says you should move on. Give yourself the time to process through all of this. It is tough! It’s not easy! You are strong - look what you’ve been through!!!

I’m so sorry you have to deal with a move, too! Sending a virtual hug!

I'm coming in very late to this thread, but I'm so grateful I found it. Post cancer treatment has been more difficult emotionally for me than going through the treatment itself. I was told how "lucky" I was because I was "only" 1B ER/PR+ HER2- in both breasts with very low oncotype scores. I had a double mastectomy in Oct '23, had a second surgery Nov '23 because they didn't get clear margins. went to three radiation oncologists who all gave me different info (ended up forgoing radiation), and spent countless hours on the internet reading every medical article I could find that looked remotely like my situation. I fought with doctors to get things done, had to show a brave face to my family, and, sometimes, had get angry to just to keep going. The issue is, now that's its "done" I don't feel okay. I don't feel like my pre-BC self. I feel like I've been in fight or flight mode for so long I don't know how to turn it off. And between the Tamoxifen turning me into a crazy person with constant hot flashes, not being able to exercise for almost 8 months due to surgeries, and people around me thinking I should just be done and over it...it has been difficult to be positive. We also sold our home and are moving to another city which brings up its own stressors - packing up, starting over, finding a new job, new doctors, etc. This past week I felt like I hit a low point. Today I made a conscious effort that I was going to start trying to moving toward a more positive me - I can finally exercise, I'm trying to eat better, and I found this support group. Reading your posts made me feel a lot less crazy and more normal. I am very appreciative of that. Thank you for sharing your stories.

@bpknitter53 "this 'survivorship' doesn't have a fixed duration." So very true. It doesn't. People genuinely care. . . .at least the ones I know do - but they don't know how to identify with me, being a cancer survivor. I probably let my "it'll get better soon" hope last too long before I reached out to a psychologist for cognitive behavioral therapy. I have a master's in therapy and counseling, myself, so I understand this stuff . . . but I kept thinking I would have the gumption to get over it. Instead, the heaviness my heart can feel is like a familiar friend, though unwanted, when it comes to visit a little while. And I just got used to that feeling. Our brains record trauma in certain ways, and sometimes those memories get stuck. I describe it to my husband as a wheel that has a cog stuck in it. . . the wheel continues to try to keep turning, but it hitches in one spot. That's how this part of the healing can feel to me. I get stuck. Think of a grinding gear. . . sorta like that. My provider and I are working on using the flash technique and EMDR to access those thoughts that are so deeply tucked away, and recode them a bit, so my memory wraps those harder things with something good. Think of taking a pill that has a bitter taste. . . did your mother ever wrap it in something? I chuckle just a bit when I think of that word picture. . my memories need something yummy around the pill. Though I'm having some early success with that, there is still some more to go. I think what's important is that we realize this emotional part takes time - and to be patient with ourselves until we heal more fully. I, too, think about how the lingering emotional stress affects my physical body, and even that can cause stress. The point being - just give myself time. I'm already doing what I can in terms of going in and accessing those harder memories. . . now, just welcome the time, and let it do its job. Nope, there is no "fixed duration". How much easier it might be for us to quantify the number of days if we just had an "end" date. But we press on. With help from others. I am four years out from cancer surgery next month. Just. keep. going. :).

I have to say the other day I vented - it was a bad day; but I'm happy to say today is much better. Went out to meet my knitting group and talked about the other people's ailments (knees, back, thyroid issues) that they are working through - but everything appears to be moving very slowly for them. Once I was diagnosed - plan put into place and I started treatment within a couple months - my choice to delay until after the holidays. I need to make a concerted effort to find things to stay involved in, to keep my mind occupied. I do have a list of knitting things I want to learn so that's a plus. But thank you to everyone that sent hugs - today is a much better day.

I was diagnosed at Stage 3 May 2019 and did the surgery, chemo, radiation route. I'm on Letrozole (switched from Anastrozole), but only plan on doing 5 years (oncologist onboard). I take Prolia because of Osteopenia + Letrozole. At appointment next month I plan to ask to switch from Prolia and get tentative end date to wind down maintenance(?) treatment of drugs and check-ups and what happens from there. So, I guess I'm questioning why 10 years on Anastrozole? Do you like your oncologist? In 5 years I'm on oncologist #4 (1 moved across the country). I totally respect everyone's decisions because they know there bodies best, but I do fault myself for not catching my cancer sooner. I had 2 clean mammos, but had a snarky technician who made me feel like a cow with a tag in her ear, so I didn't go back rationalizing that there was no family history. Bad move as I found out the hard way 7 years later. So I will continue annual mammograms. I admire the strength you show, but maybe encourage you to maybe reconsider on the mammogram, and decide if you're happy with your oncologist. Whatever you decide, we've got your back!

Oh wow, I truely understand everything you are saying. I am back to feeling alone because I'm the only one worrying about reccurence and googling every symptom I feel. I too tell most people I'm ok, yet I'm not myself. I do sometimes tell my husband when I'm exhausted cause I don't cook or go to bed early. He is supportive but I do wish he helped me more around the house. I use to love puttering but I don't anymore. I also have lost desire to work. So not like me. I feel so different now and I can't explain it. Sometimes I even wish I would get the reccurence now to get it over with. How sick is that?? I feel a mess, but yet " I'm good".

@rom828 - I thought the hard part was the treatments - boy was I wrong. Sometimes I feel fearful - and sometimes I can't even express what I'm fearful of. Other times everything my husband does annoys me and I wonder I have enough to worry about - why do I put up with the stuff that he does that annoys me. I'm extremely fortunate - I really did breeze through my chemo, surgery (bilateral - no reconstruction) and radiation - those had a fixed duration. This "survivorship" doesn't have an fixed duration. I'm only 1 year post treatment. I'm TNBC & BRCA2+ and my recurrence is highest the first 5 years post treatment. So am I going to be fearful for the next 4 years until I get past my 5 year milestone? I sure hope not - the stress and anxiety will do me no good. I have started doing some yoga and mediation and I hope that helps.

There are many times people ask how are you doing and I tell them "I'm fine"; but the opposite is true - how can you explain to someone the anxiety and worry about "am I doing everything I can to suppress a recurrence - will anything I do make any difference?" There is nothing they can say or do - and they just won't even understand the question. This site has been a safe place for me to vent and learn what others are doing to help make "survivorship" less stressful. Thank you for letting me vent.