Have you experienced PTS or PTSD following a breast cancer diagnosis?
Please share below your experiences with PTS (post-traumatic stress) or PTSD (post-traumatic stress disorder). How has this affected your life, the way you feel, your relationships, activities? And how are you managing?
Have you experienced PTS or PTSD following a breast cancer diagnosis? 47 votes
42 votes
5 votes
Comments
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Yes
I have been diagnosed with breast cancer three times. What could go wrong, from day one of my first diagnosis in 2003, did. None of my doctors seemed to be concerned with my mental health. I was absolutely mutilated, poisoned and burned, but the medical community calls it, surgery, chemotherapy and radiation therapy. Such nice clinical words!
It is too painful to write about in detail. I had three doctors treating my cancer in 2003, no such thing as a team of doctors, I had to seek each one out, they didn't communicate except when I was burned so badly by radiation that I had jellybean size blisters on the top of my breast on top of the entire breast being covered with tiny blisters, and the skin under my breast sloughed off! Then my medical oncologist called the radiation oncologist and told her he would tell them when I could continue with my radiation treatments. (over two weeks later) I had a lot of physical pain, but also mental anguish. Did they care, NO!
I tried to push my anger way down inside me and for the most part, I did. I had a lot going on, I was pre-menopausal at the time, had two children and a husband who worked two jobs. I worked as well. A month after my diagnosis, my mother was diagnosed, and a year to the day of my biopsy, my oldest sister had a biopsy and was diagnosed with IDC and non-Hodgkins Lymphoma at the same time! So yes, my mind was a mess!
I had constant nightmares, often became short tempered, and cried a lot. I went to a well-known cancer hospital for my biopsy and treatment when, almost 16 years later, I was diagnosed with ILC. While I was assigned a Social Worker at my request, I was lied to by my breast surgeon who refused to remove both breasts telling me it was the hospital policy not to remove a healthy breast! I will never get closure on that because he passed away in 2021, but not before being named Dean of their Medical School! He never knew that less than three years after he removed my left breast, I was diagnosed with DCIS and IDC in the other breast that was supposedly "healthy!"
I went back to my local hospital the last time I was diagnosed, a whole new team, who blew me off when I asked for mental/emotional support. Their response to my request was "join a breast cancer group!" At the end of treatment someone sent me a detailed "Survivorship Plan." In it the person said MY TEAM WANTS ME TO HAVE MAMMOGRAMS BEGINNING A YEAR FROM MY LAST ONE!
First, I HAVE NO BREASTS! Second, I AM NOT A SURVIVOR UNTIL I DIE OF SOMETHING ELSE SO DON'T CALL ME THAT! That letter, which BTW NO ONE FROM THE HOSPITAL APPARENTLY KNEW WHO GENERATED THAT LETTER! ONE PERSON TOLD ME THE NURSE WHO SIGNED THE LETTER, HADN'T WORKED IN THAT HOSPITAL IN OVER SIX MONTHS! SO, SOMEONE KNEW HER, YET NO ONE WOULD TELL ME WHO AUTHORIZED THAT LETTER OR WHO GENERATED IT! MY PLASTIC SURGEON, BREAST SURGEON, AND MEDICAL ONCOLOGIST ALL DENIED SENDING OUT THE LETTER, YET IT HAD MY MEDICAL HISTORY DETAILED IN IT!
I WAS TOLD I OVER-REACTED TO IT AND THEY MADE ME FEEL IT WAS NO BIG DEAL!
I have never been diagnosed with PTS or PTSD, because I couldn't get any mental support, but that letter caused me to spend that entire night writing that nurse a letter expressing the anger felt! I revised my letter over and over and over again all night long. Hundreds of times, revision, revision, revision, I couldn't stop myself. I felt as if I was exploding on the inside! I was awake for over 30 hours and literally collapsed due to the mental stress and lack of sleep. WHEN I TOLD MY TEAM ABOUT THAT, NONE OF THEM CARED! They all totally blew me off, made light of it. Did they really think I could trust them after they did that to me?
So, I have once again pushed all those feelings back deep inside me so if or when they will burst to the surface again is anyone's guess. I stopped seeing my plastic surgeon, who is also a lymphedema doctor and wanted to do surgery on my lymphedema arm, as well as my breast surgeon. I just can't go back to see them! I still see my medical oncologist only because I am on Letrozole. I was told by his nurse that the letter definitely wasn't generated by their office and I believe her. I now stay as far away from doctors as I can.
I firmly believe anyone who is diagnosed with breast cancer should have a social worker or mental health expert as part of their team! I don't think that will ever happen, but one can hope!
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@mavericksmom we're so sorry to hear about that letter, and all it evoked. It IS infuriating when you don't feel heard, or understood. There should have been an apology and explanation. And we couldn't agree more that part of the care for breast cancer SHOULD automatically include a mental health expert. We're glad you still have a good, working relationship with your med oncologist!
We appreciate you sharing your experiences, and are sending you hugs.
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Yes
I can say my journey is not anywhere near @mavericksmom experience. My hat's off to you and God bless you! But, I have been diagnosed with PTSD for other reasons and I know this will be added to the list.
I have been recently diagnosed with Stage 1A IDC & DCIS back in February of this year. I had my annual mammogram in January and was called by my gyno's office by a MA, nurse or CNA or whoever and she was trying to explain my results but she couldn't relay it with accuracy. So not thinking of it I went on believing everything was okay. Until, I got The Letter. You know the one, "…there is an area(s) of concern…" So here's your next appointment for another mammogram and ultrasound. I cried but tried to think positive because the last time I got a letter like that back in 2017, it was a papilloma.
Fast forward just a bit, I had my lumpectomy on May 3. Went through the lymph node injection (not pleasant), had guide wires inserted (again not pleasant), more mammograms, blood tests, etc. It was an exhausting two days. I cried a lot, told my surgeon team that if I died on the table, they would be haunted for the rest of their lives. They were great…still ALIVE!
Now I'm in the post-op phase and was told that I would see a medical oncologist and radiation oncologist. More doctors!! I had the MO appt and was told of my options…UGH!!! Since I have other physical and mental health issues, I fear that the AI and OVI will negatively interact with my meds. I've tried to contact my doctors for help and no response so far. I also had my RO appt last week and was scheduled for CT scan/simulation for today on the opposite side of town (not happy with that) and it is possible I could have my daily treatments on the opposite side of town, as well….NOOOOOO!!!
With all this going on, I had a melt down and cried at my family lunch this past Saturday. I told everyone that I did not want treatment. Of course, everyone had their say. My anxiety has been heightened and it has been exhausting. I've cried in the shower today and don't want to go to my appointment; but I know I have to go.
My husband has been my rock and he has been right there with me but I can honestly say that this is going on the list of traumas. God knows if I will go back and get my mammogram in the future.
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No
I haven't experience it but only because I experienced it first with my mother's cancer death eight years before. So any lingering issues I have were there before my diagnosis. But I do have incredible scanxiety. Even blood work right now bothers me. I want to just be left alone. I fight through it as needed but I imagine it will always be a challenge. Good thing I fight through it, though. It was the only reason my breast cancer was caught. I hated mammograms something awful but never missed one.
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I am in remission for 6 years. I have anxiety all the time plus I have Covid right now. Im so sick of the anxiety. The psyc said I have ocd cause I keep asking the same questions. Since I have ocd they do not give you reassurance. He asked me if I had dreams about the bc I said no so he said I didn’t have ptsd. I had bmx cause I thought it would help me move be on but that didn’t help. There are no tests once you get bmx. My oncologist told me she would never say I would be ok because she is supersticious and does not want to jinx anything. She did a few scans said they found no cancer and sent me to my pcp for follow up. Anxiety meds don’t work for me. I exercise everyday. Walk or swim . Can’t now cause I have Covid. I know people who do ok after bc their mental health is ok. I asked my mental health providers if they had experience helping people with bc, they say “probably”. I would like to get rid of the anxiety but don’t know how. I would love to relax and move on and travel but I’m so caught up in bc and anxiety. Will the bc come back? Who knows and it freaks me out when I think that I could live many years everyday in anxiety. I asked if a psycho oncologist could help me, if they had training and experience that would calm me down. Mavericks mom I understand, I have to be careful of my drs cause I’m afraid they won’t treat me.
I just want to feel better. Feel safe
NIH says people who get diagnosis in right way do better after bc. The emotional aspect is what causes so much anxiety. When you get anxiety then you get physical feelings. Isn’t there a better way to treat us? I have recently go so many solicitations about coaches and programs but not much helps they all looking for money. I pray I will get a little better. Thank you for your prayers
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Yes
YesI think I buried it all down because I need to put on a good front for my family as I have 2 young girls. That could have been contributor to my high BP before the surgery. Once surgery was done, my BP went down and I felt a sense of relieve, almost like ok the "important part" is done. Then came the meds, endocrine therapy, which make it all come back with a full force. Meds are still in my system, just waiting it all to be out. Anxiety, negative thoughts are less now but still somewhere in the back of my mind. I am not taking any drugs for depression or anxiety as I am just scared looking at all those side effects. Right now I am using acupuncture to help manage it. It does not do it 100% but like 70-80%. I dont get some of the crazy side effects like a pill. I can only go 7 days max before another session is needed, but I will take that over SE's any day.
Maybe once the drug is out of me, I can deal and cope better. I just want to be normal again. Yet I know it wont happen.
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There is no post -- more like Constant Traumatic Stress and I am not ok.
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@mkestrel We're so sorry you are feeling such constant stress. Have you talked to a mental health expert about treatment options to help you? Also, consider joining our meetups (3 different ones for MBC):
@bcfightr24 thank you for sharing. We're glad you have your husband as a strong support. Follow up appointments can be really anxiety producing! We hope you continue though to go 🤗
@lovelau we're so sorry your anxiety continues. Since meds don't work for you, have you considered EMDR?
https://www.apa.org/ptsd-guideline/treatments/eye-movement-reprocessing
Or perhaps you've already done that.
@zen1028 Yes, so hopeful for you that once you're through the treatment, your coping will improve. It's so difficult to have to be the strong mom, when you're not feeling it. Sending you strength.
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Yes
I was diagnosed with osteoporosis only after electing to do a lumpectomy/radiation/letrozole vs. mastectomy with no radiation/letrozome. Only when I went I was sent to do see an endocrinologist to treat the osteoporisis did I learn that having had the radiation limits the kind of treatment I can get to improve bone density. I feel like my team really let me down by not taking one look at my bony frame/BMI and saying "maybe you need to get a bone scan before making the decision." I also have breast/chest wall/under arm lymphedema, which require twice daily massages. The letrozole increases arthritic knee pain, which I can't stand. These things depress me and I have hard time moving on.
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Hi @Flicka, welcome and thanks for posting. We're so very sorry to hear of all the troubles your treatment has brought you, and for the disappointment in your treatment team. Please know you're not alone here, we're all here to hold you up while you manage these ongoing side effects. Sending gentle hugs to you!
Have you considered speaking with a mental health professional about your depression to talk through your feelings?
Here are some resources you might find helpful:
We hope this helps. Please let us know if there's anything else we can help with. We're all here to support you!
Gentle hugs,
—The Mods
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Yes
Thanks so much mods for your helpful response. I have been trying to find a mental health professional but my schedule makes it difficult. In a couple of weeks I will be able to go to mindfullness in nature mediation for BC survivors and next month an equine therapy program. I'm excited about those two things.
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Yes
I want to add that I am therapist myself, so it can be hard to feel like I am "failing" at taking care of my mental health. It was nice to get the mods note this morning and also to read what other people are going through. I feel less alone in not feeling all better. It's hard when my family says things like "you had your treatment and now you're all better" and I don't want to contradict them, especially elderly parents. And now I feel that just by this forum I am beginning to take care of my mental health.
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No
I have PTSD that I was diagnosed with Before my breast cancer diagnosis. I don't know but wonder if the cancer diagnosis has significantly changed my PTS experience.
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@Flicka thanks for all the feedback, and glad you are here sharing. @sepia_sunfury , we welcome you here too, and hope that that the PTS you had prior to breast cancer does NOT get worse. We're all here for you.
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Yes
Like @Flicka, I too am a mental health professional - and with a specialty in trauma and EMDR. Hurtling through the fire that is treatment, and knowing I must now live perpetually with the aftermath that includes the possibility of recurrence (and if recurrence, succumbing), and my own personal EMDR journey has stoked my passion for my work and absolutely has made me a better therapist. A silver lining I didn’t ask for, but am grateful to have found.
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