Emotional aftermath following breast cancer treatment

@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!

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.

Wow! You just described ME!! I've been a year and 1/2 since my diagnosis and I can't shake thinking about cancer, everything I went and recurrence. I feel like my family thinks I should be ' over this' and move on but it consumes me still. I actively seek to help others and I do think I'm a bit obsessed with investigating options, but it is the only thing that helps me make sense of me not moving past this. You are certainly not alone!!! I should be putting this journey behind me but I dont know how.

I'm responding here Rom828, and also to the discussion in general. When I was 21 (now 70) I almost died from swine flu and was hospitalized for many months. I had a classic near death experience, without any idea what that was. I was never able to put the experience behind me. I actually ended up living a much more authentic, adventurous, and fulfilling life than I would have. With breast cancer two years ago I'm just using my hard won skills of living WITH experience rather than moving on. I really can relate, though, to what you & others have been saying about friends & family figuring it should be over. So many things are never over--including beautiful experiences. Your comment about helping others also seems significant. I once heard a Zen teacher say--if you don't know what to do, do something for someone else. Anyway I feel like your reaction is quite normal--and it is YOURS. Therapy can always help if you feel too negatively obsessed, but I'm sending you, tullynut, and everyone a vote of confidence.

I'm sorry for all you had to go through. You are a really brave and persistent person! It was an excellent decision to see a psychologist. You were looking out for your own best interests and seeking ways to heal, which is always appropriate. Congratulations on getting the help you need and insisting on it!

I agree talk to your body or I call them -“my soldier cells.” I let them know that their doing a good job and I’m trying to help them too. Plus I thank my little healthy good “Soldier cells” that they have always been good to me in the past. Using your inner voice to talk to your body can give you a peace that I can not explain. So now the war is on inside to stomp out those sneaky bad cancer cells that don’t belong with my good “soldier cells.” They are not part of my army. Not ready for the end, too much to do and see more miracles happen. Find your inner peace and find your own “soldier cells” there always there and listening, just you and you alone can talk to them. 😎❤️🤗🫶🏻👊🙏🗣️❤️‍🩹❣️

Do you have any groups that you would recommend to help me get over the anxiety. 6 years remission.stage 1b Lobular breast cancer: dmx, onco type oncologist said chemo won’t work. Then said after I said ok to radiation she would give me chemo but I didn’t. Took anestrozole 4 years dr said stop cause of anxiety tried other ais. Tamoxifen the stopped. I wanted to go back on ais but she said no because of resistance. Then year 5 I had scans dr said ned. I said so will I be ok, she said “ I would never say that because I’m supersticious and I don’t want to jinx anything and she d/c me to pcp. I want to stop the anxiety and have my life back. Any groups that might help? Thanks

To moderators: any suggestions please

Cancer care has a support group, sign up online. What is pcp?

I am glad you’re still here. Were you lymph node positive?

There are two or three more hormone blockers, I am now talking Letrozoe. Maybe you can take that one?

Yes I had 1 it was .90mm sentinel node 26 were taken all negative. The oncologist said I would be resistant. I appreciate the message, next week I get colonoscopy for stomachache.