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Depression, anxiety and suicidal ideation

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In May 2021 I was diagnosed with DCIS & subsequently had a lumpectomy. In 2009 at age 52 a complete hysterectomy was performed because there was a 25% chance I had uterine cancer. Instead of being relieved, I was furious. A week after the hysterectomy I experienced the most traumatic event of my life: I felt that another woman had replaced me, my genitalia was shrunken and if I did not a solution to this, I would have killed myself. ERT saved my life. Because I no longer had a uterus I was told I could take ERT for the rest of my life. Due to the Estrogen receptive status of my small, & clear margined DCIS my surgeon told me to stop the ERT immediately, thankfully my gynecologist gave me a tapering plan. I have psoriatic arthritis, an autoimmune disease, and take biologic medication for it. I underwent two knee replacements due to the destruction of my joints. At this juncture I plan to refuse estrogen blocking drugs and plan to take the the smallest dose of ERT. I am a traumatized again and feel if I cannot continue using a small amount of ERT, I would rather die. I do not think doctors should be the gatekeepers to MY mental health. I view the proposed treatment will make me a eunuch. I believe that saving my breasts will kill who I am. I am angry, feel trapped and sad that I have to make this choice. I feel that cancer treatments offered to women is untenable for me. I do believe, if men had this disease, there would be alternative treatments. Men would not accept losing their vitality and sexuality so what should I? I don’t know why I am posting this because I don’t believe anyone can change my mind. I just want to share the psychological ramifications in the hopes that this will be addressed and doctors will treat patients as people, not just breasts

Comments

  • jhl
    jhl Member Posts: 174
    edited July 2021
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    Brush,

    I can hear your pain through your words. Do you see a psychiatrist or therapist? I ask because you still have a lot of trauma from your 2009 surgery and this more recent diagnosis seems to bring it all forward. Your comments about how we see ourselves as women after undergoing treatment does indeed change us. However, I disagree with your comments about men. The treatments for prostate and testicular cancers are really devastating for men. They also lose their vitality and sexuality. That said, there is no purpose in trying to force equivalency.

    Please ask your BS or MO about a referral to someone who can help you process these feelings.

    Be well,

    Jane

  • cowgirl13
    cowgirl13 Member Posts: 778
    edited July 2021
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    I, too, hear so much pain. I'd like to suggest that you see a psychiatrist who can diagnose whether you are depressed and/or suffering from PTSD. Meds have saved my life as I can experience overwhelming periods of depression and hopelessness. And I do come out of these episodes. Try to not make any decisions right now and call today to get an appointment. You don't have to do what the physiciatrist suggests, just get yourself there and take it from there. Praying for strength for you.

  • brushjanus50t
    brushjanus50t Member Posts: 7
    edited July 2021
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    Thank you for your thoughtful and encouraging comments. And thank you for pointing out that men, do indeed shoulder illnesses that compromise and lessens the qualities of their lives. I do see a psychiatrist and have speaking to my therapist, who I only talk to when needed which is now. I don’t believe there is a solution to this for me. I powerfully push against this disease. I cannot fathom a quality of life with the tools the medical community is suggesting. If I had an invasive cancer I know I would think differently. Thank you so much. I will keep you posted.

  • typhoon
    typhoon Member Posts: 59
    edited July 2021
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    BrushJanus50T - I'm so very sorry that you are suffering. You have been through so much, all of it traumatic. As others have suggested, please consider getting help and support for your mental and emotional needs - you've been diligent about taking care of your body, but your mind and heart deserve the same level of care. Sending you my best wishes, and please let us know how it goes.

  • typhoon
    typhoon Member Posts: 59
    edited July 2021
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    Brush - Just saw your comment. So glad that you are getting therapy. You're right - the choices we face and decisions we have to make can often seem unfair, with no *good* options, just varying degrees of bad options. Please remember, though, that you are the driver here. It is completely your choice on whether to pursue endocrine therapy (and my understanding is that many women with DCIS-only diagnoses opt out of Tamoxifen/AIs), and it is completely your choice regarding continuing some level of ERT (which some women also continue to take, despite ER+ cancers, for a variety of very valid reasons). Wishing you the very best!

  • brushjanus50t
    brushjanus50t Member Posts: 7
    edited July 2021
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    Thank you for reaching out to me. Like you, I have suffered from depression and anxiety. I am currently being successfully treated for it, however, understandably this has pushed through it. Many years ago I did experience PSTD, which I didn’t know at the time, due to another traumatic event. Looking back on it, all the associated behaviors of PSTD were there. Meds have saved my life too. Postpartum Depression undiagnosed for 9 months, the first day I took an antidepressant, it was like bam, leaves became brighter, more beautiful and shortly thereafter the unrelenting anxiety in my life left, I could laugh again and not ruminate. In this case I don’t think there’s an additional medication that will change how I feel. I refuse to lose me. Me as the person I am. I can never go back there. I will seek the best doctor who will take the wholeness of who I am and offer an acceptable plan for me. Maybe I’m in denial but I will travel to Mexico to get what I need. This my plan. THANK YOU

  • alicebastable
    alicebastable Member Posts: 1,945
    edited July 2021
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    BrushJanus50T

    I am so, so sorry you feel this way. I had endometrial/uterine cancer (it was officially endometrial, but the pathology showed it had slightly invaded the uterus, so I don't know what the hell to call it!) and a very thorough hysterectomy in 2008. Although I was 58, hormone tests showed I was nowhere near menopause before surgery. My gyn oncology surgeon would not allow HRT and I physically did surprisingly well without it. Physically. I signed up for a site similar to this, for gynecological diseases including cancer, and although it was mostly supportive, I was furious when one of my posts, discussing feeling neutered, was removed, with the crappy explanation that it might upset some people. Well, I was upset or I wouldn't have tried to discuss it! So I never really got to talk that through with anyone. I just tamped those feelings down as far as I could because I had no way to let them out. My body was already filled with arthritis and I'd had back surgery about 10 years earlier, then a hip replacement in 2010. In 2018, I was diagnosed with both breast cancer and kidney cancer. The breast cancer was very highly ER and PR positive, without my lady parts or HRT. I seem to have a large reserve supply, maybe behind my knee. So I gave up two more body parts. I took Tamoxifen for about a year, and then quit. Thanks to the kidney cancer, I can't take NSAIDs for the pain my joints create every day, just Tylenol, which barely takes the edge off. Then on one of my CT scans (standard nephrectomy follow-up), there were fatty spots on my liver. I did some poking around on Google (I refuse to call that research) and found that tamoxifen and fatty livers are a bad combination; I can't remember if there was a cause-effect situation, but definitely Tamoxifen exacerbates the problem. I need that liver to process the Tylenol that keeps me semi-functioning. I was also turning into a shrieky, cranky, horrible person on it. So I stopped the pill. I get crap from my MO about it, but I can live with that. Maybe I've upped my chances of recurrence or spread, but I've seen people who took their pills faithfully and still had the cancer make a return engagement. And I'm probably more afraid of a new and different cancer, with my track record, than being re-haunted by a ghost of cancer past.

    Do what you have to for your body and mind. But maybe try counseling since you still seem so angry about the hysterectomy from 12 years ago. Fighting the past is just exhausting and never changes anything. And maybe you can get past thinking of yourself as a eunuch. I may be missing the parts to create and feed a baby (as if I'd want one at my age!) but, TMI warning, what's left in those nether regions still enjoys life.

    ETA: I didn't see your subsequent posts since this took me a while to write. So substitute "continue" for "try" and best of luck to you.

  • orangeflower
    orangeflower Member Posts: 95
    edited July 2021
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    Mental health is just as important as physical health, and the two are intertwined.

    My gyn told me she gave estrogen to a patient with a history of breast cancer because the woman's ovaries had been removed, and her severe hot flashes were seriously interfering with her life. Maybe most doctors wouldn't do this, but apparently some will. Just putting that out there.

  • brushjanus50t
    brushjanus50t Member Posts: 7
    edited July 2021
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    You have endured so much and I am deeply sorry for your continued pain. I also admire you because your post shows your commitment to fight. You seem strong. Thank you for your encouragement and story. My thoughts are with you! I wish I could write more to you now. A big hug

  • brushjanus50t
    brushjanus50t Member Posts: 7
    edited July 2021
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    Thank you for your post. What you wrote put a big smile on my face and lightened my day. A yes mental health is just as important as physical health and they are intertwined. Thank you

  • WC3
    WC3 Member Posts: 658
    edited July 2021
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    BrushJanus50T:

    I think role of hormones and mental health and wellness are severely underconsidered by the medical community, but that may be partially because it is a difficult topic to touch without offending someone.

    Perhaps tamoxifen is an option for you because while it blocks estrogen in breast tissue, it mimics estrogen in other parts of the body such as the uterus when present, skin, bones, and brain and possibly other tissues, so it may restore your sense of vitality while also suppressing any remaining DCIS or IDC.


  • waves2stars
    waves2stars Member Posts: 126
    edited August 2021
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    BrushJanus50T, I went to a gyno this summer because of some bleeding issues. Was told I have a large fibroid causing uterine distortion and adenomyosis, which I already suspected because of super flooding periods. But she suggested there was necrosis in the fibroid which indicated it could be a uterine leiosarcoma (can’t remember if I’m spelling right). So she would have to do a full hysterectomy to prevent its metastasizing, said it was bleak but surgery would save me, gave me literature and studies written to surgeons about treatment. Basically, they can’t tell 100% if it’s cancer until they remove it, but if they don’t take the whole uterus and disturb the tumor, it will immediately metastasize, less than 5 years to live. But the literature also said if you do remove the whole uterus, chances of recurrence are still high. Plus, I could then have all the hormones I wanted. So it was a stupid crapshoot for me. I was angry because if feel like there is a commoditization of gynecological surgeries, there’s data to prove it, and it’s no big deal to remove female organs because, hey, you’re not having anymore kids so you don’t need them. I asked my gyn why they don’t remove a whole enlarged prostate on old men, even if it’s not cancer? He can probably pee better, he’s not having anymore kids, it’s not necessary because he can still have nice dry sex. She didn’t say anything. I had an mri, showing it is a normal necrosing fibroid. But I do have a polyp or hyperplasia. They couldn’t do the hysterscopy because of the distortion. I cancelled my appt for myomectomy and biopsy because I KNEW I would wake up w a hysterectomy. I decided I would take my chances, but scheduled a second opinion for my mom’s sake. Two weeks later I felt the lump.

    I wanted hormones the rest of my life for my mental health. I had severe ppd, pms, insomnia since my late 20’s, and suicidal ideation just taking the pill for 3 months. Testosterone actually CURED my 10 year battle with anxiety and OCD. I haven’t been on it for a year, but I haven’t worried about giving people rabies, legionnaire’s disease, or checked the local news to make sure I hadn’t run over a homeless person once. I haven’t gotten into a confrontation with any strangers, lol! I did have disturbing apathy, but that’s nothing compared to what I used to deal with. I guess it rewired my brain. But besides dealing with body shame, the thing I’m most scared of with this dx is the possibility of going back to live in my own personal house of horrors, how I used to be.

    I want to tell you it won’t happen, but no one can predict how you will fare. From reading this site in the last week, I’ve seen different therapies effecting women in different ways. There may be a therapy that will be tolerable to you but you won’t know for sure unless you try. Surely the trauma from your surgery and it’s fallout are compounding all the fear that comes with this dx, plus the complete lack of control over what’s happening to your body and mind.

    Hormones are really vital to some women’s mental health, it’s no joke or nothing to minimize. I don’t have your exact experience but I think I have your exact fears. You’re not alone.

  • ayur88807
    ayur88807 Member Posts: 1
    edited August 2021
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    Psychologists use expressive arts therapy in many settings to help people explore difficult issues in their lives.

    Art, music, and dance are forms of creative expression that can help you process and cope with emotional issues, including depression. Expressive therapy goes beyond traditional talk therapy. It focuses on creative outlets as a means of expression. This therapy can be especially helpful for people who find it difficult to talk about their thoughts and emotions.

    Expressive therapy can include various forms of artistic expression. This can include:

    • art
    • music
    • dance
    • drama
    • writing and storytelling

    In expressive therapy, the therapist encourages you to use these arts to communicate about emotions and life events. These are often subjects that you may find difficult to put into words.

    healthline.com/health/depression/expressive-therapy#Overview1

  • brushjanus50t
    brushjanus50t Member Posts: 7
    edited August 2021
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    Thank you for sharing your story with me and I am sorry you have experienced so much trauma. It’s all so difficult. Some days it’s denial and planning to continue taking ERT, slowing confronting the reality breast cancer. Currently I mourning who I was. I have fought my whole life and out chased most negative things - this roadblock truly has me stumped or angry or sad. Sometimes I feel the hell with it. No longer feel suicidal but just beaten down. Just tired of it. I thank you, unless I read your message wrong, that you came out of this stronger and okay

  • brushjanus50t
    brushjanus50t Member Posts: 7
    edited August 2021
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    Thank you for your recommendations. Coincidentally I am a fine artist. I recently painted an image of a blood dripped scalpel retreating from a stitched up breast after a lumpectomy. I have done surgery art before which has been published and now is part of a hospital art collection: in these I celebrate surgery. The breast one, unlike the other ones, takes a darker turn. I am also writing a book about how I became an artist, the history from which it sprung (which was more than complicated) along with images of my paintings. I want my story to be published. The goal is to pull in the reader. So I do write. I’m trying to take this loss and make it art. I am trying to deal with it while continuing to paint in the vocabulary of my genre because that is what sells. I don’t paint to sell but very much feel affirmed when another person connects to what I’ve done - enough to want it in their home. Today I just feel exhausted from the whole thing. But I will stick some music buds in my ears and try to call up a positive energy. Unfortunately I rely on passionate muses to do this. So I am searching for passion which propels the best work - I will remember your cheerleading words and remain grateful to you.

  • vidal1993
    vidal1993 Member Posts: 60
    edited May 2022
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    I am a caregiver and husband.

    My spouse has Stage 2, and is taking Tamoxifen and Lupron. She has told me that hormone therapy has been the worst therapy of all. She has had 2 surgeries, radiation treatment and chemotherapy.

    She has had chronic pain. Recently doctors confirmed mild osteoarthritis in her knee.

    Over the past month, she seems to be deteriorating. She exploded with rage at me last Monday and told me she feels she is barely hanging on. I honestly don't think she would ever seriously attempt suicide but her just mentioning it makes me very nervous. She is very worried about recurrence.

    I have tried to encourage her to exercise and get out more. She doesn't want to see friends or neighbours, but has always been introverted.

    She is always moody and quickly gets angry. She is also Type 2 diabetic. She goes to sleep very late at night and wakes up angry in the morning. She will sleep during the day sometimes. We have 2 young girls 10 and 8.

    I try to be as supportive as possible but I often feel helpless.

    I know that she has been seen a psychiatrist for mental health issues in the past (well before her June 2019 diagnosis), and I understand there is some research indicating a link between Tamoxifen and depression.

    When I suggest she should see a psychiatrist, she gets furious. I know she spoke to a social worker last month. She seems to have an extreme aversion to admitting any sort of mental health difficulty which I understand is often the case in Chinese culture.

    I feel like I should report what she feels to her oncologist as she needs this information to ensure she gets properly treated and cared for and the oncologist needs this information. I know she would never volunteer or admit to any depressive symptoms. Since COVID, I have not been able to attend meetings with the oncologist.

    Anyone have any thoughts, comments or suggestions?

  • salamandra
    salamandra Member Posts: 745
    edited May 2022
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    Ah Vidal, I'm so sorry.

    Her doctor cannot communicate with you because their confidentiality is owed to the patient, but I have heard of people writing a letter to a loved one's doctor.

    Pain, lack of sleep, med side effects, something new medically going on, could all account for the anger and depressive feelings. But that would still take real honest conversations with doctors to get diagnosis and treatment started. It's also possible that that the sheer fear of being diagnosed with a recurrence is preventing her from seeking any medical follow-up at all - she wouldn't be the first. But it's her body and her show, and really not much you can do.

    It's a very tough position to be in. I think the best you can do is to get your own mental health support from your own therapist, who can help you figure out how to best take care of yourself and your daughters and make healthy support *and* healthy boundaries with your wife.


  • harley07
    harley07 Member Posts: 302
    edited May 2022
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    @Vidal - I’m so sorry for what you and your wife are going through. It is entirely appropriate for you to contact your wife’s oncologist to express concern if you believe she may harm herself. The oncologist should be able to refer your wife and family to a social worker within their hospital system. Please do not delay in reaching out for help and support for you, your wife and children.


  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited May 2022
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    This could all be hormonal. Tamoxifen and Lupron did to me what sounds like what's going on with your wife. She needs to see her doctor ASAP. Go with her and explain what's going on if necessary. Not a psychiatrist, but her oncologist first.
  • vidal1993
    vidal1993 Member Posts: 60
    edited June 2022
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    Thank you Salamandra for your thoughtful reply.

    Your comment re: sheer fear of being diagnosed with a recurrence was insightful and interesting. She tells me she is in constant fear of it.

  • vidal1993
    vidal1993 Member Posts: 60
    edited June 2022
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    Thank you Parakeetsrule. You may indeed be right. We are making an appointment to go see her oncologist together. Incidentally there was another explosion at the grocery store yesterday.

  • vidal1993
    vidal1993 Member Posts: 60
    edited June 2022
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    Thank you harley07. Going to see the oncologist. Wife wants to stop the Lupron. We will see what the oncologist says.

  • mpetago
    mpetago Member Posts: 54
    edited June 2022
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    I just saw this thread after writing a post about wanting to try HRT for severe depression I have developed coinciding with onset of menopause. I was premenopausal at age 35 and highly ER+ so encouraged to have oophorectomy as part of treatment, but I refused. I just knew I would have a horrible response from super high to no estrogen and felt like enough things had been removed already. I did tamoxifen with lupron for five years, and while I did have some side effects, it was just hot flashes and weight gain, or so I thought.

    Now I'm 54 and have gone naturally into menopause, or I'm very close, and in the most severe, suicidal depression I could imagine. In the last six months, I can now barely leave my house, and completely lethargic and empty. A good accomplishment for a day would be taking a shower, or eating. Not both. So a few months ago I just sort of 'broke' one day and had to be taken off work for a month. Started seeing a psychiatrist, and now I'm on the fourth meds combo she's tried, and feel pretty much the same. It finally occurred to me that this is probably due to the loss of estrogen, especially after a lifetime of living with very high estrogen. Started doing some research (Dr Bluming), and now I'm definitely going to try HRT. I've always had really difficult life circumstances, and plenty of reasons for depression, but I have never felt this way and could overcome the craziest things while keeping a positive attitude, no matter what. That has just completely vanished somehow, along with most of my personality.

    I also thought that going into menopause naturally would be gradual, and therefore easier, and I can see now that I was mistaken about both. The estrogen plummet I suspect has caused this seems to line up with hormone labs I requested that showed a sharp drop in estrogen levels around the time I just mentally lost it. I was doing other labs for what appeared to be an autoimmune disease onset, along with ulcers, and just curious where I was at. Huge drop from last labs I had within the past year or so. Now I'm looking at so many things I had while on the tamoxifen like severe joint pain, bone pain, fatigue, and ostopenia that never really resolved but that I assumed were related to chemo. When I finished tamoxifen, I had an almost instant and massive improvement in how I felt. Lost weight effortlessly, and felt better than I ever have. And that continued until these past few years when periods became erratic. So I've decided to look for a doctor who will listen to me and be open to trying HRT. It feels to me like a matter of life and death. I read that women in the perimenopause / menopause age range have increased rates of suicide, and that makes a whole lot of sense to me now. I don't think survivorship issues have been looked at nearly enough, probably because there are so many survivors now than in the past, and we are so grateful to be alive that we accept whatever side effects we have as the price for that. And go out of our way to avoid anything that might bring cancer back. Yet here I am, a long-term ER+ stage III survivor figuring out how to get HRT because quality of life is THAT bad. And now I'm reading that HRT is contraindicated for breast cancer survivors based on one small and prematurely-closed study (HABITS)... I think we all have to let our oncologists and other doctors know that the side effects of estrogen blocking for some of us are maybe not worth the benefit, if there is one.



  • nopink2019
    nopink2019 Member Posts: 384
    edited June 2022
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    mpetago- your experience and research seems to indicate a severe reaction. You should bring this up to your MO. Or investigate a larger Cancer Center that has resources 4 mental health and coping withBC &QOL. I applaud you for pressing the issue to find a solution it works for you. Keep at it!