IDC and Mental Health

13

Comments

  • chickenlovva
    chickenlovva Member Posts: 58

    Just wanted to check in and wish everyone a good evening. Hugs to you all

  • bcfightr24
    bcfightr24 Member Posts: 90

    Hello @chickenlovva! I responded to your message prior to me seeing your comment on this discussion page. All I want to say is that I am totally with you about the depression and anxiety. At the beginning of this journey, I dipped but luckily I bounced back rather quickly since there was so much going on. My anxiety, however, is always a 100 out of 10 but I keep going. I have to tell the nurses that my blood pressure reading is going to be off the charts and I will be tachycardic. They laugh it off until they see my readings. It was funny seeing them try to calm me down.

    Anyways, I do have a great support system which helps. I hope you have a strong support system. This community has also helped tremendously. I am glad you decided to join. Please do not hesitate to message me or anyone else on here. WE are all together in this fight!

    My mantra, "Stand tall, be strong, and radiate a positive glow! Cancer will NOT rule my life!" 

  • chickenlovva
    chickenlovva Member Posts: 58

    Older post but boy am I feeling the depression today. 4 days posy second treatment. Very fatigued and soooo sad and mad that I don't feel well to do what I used to enjoy. Can't even focus on a movie 😕

    Hope you all are doing well though!

  • moderators
    moderators Posts: 8,652
    edited May 20

    Honestly, managing anxiety one's anxiety, especially when it comes to cancer is so difficult, @bcfightr24. I'm sure they laugh it off because they're not putting themselves in your shoes to see what it would feel like to them if they were in your position. That's the difference between sympathy and empathy, I think. Unless you're empathizing, which requires actively listening to someone and putting yourself in their shoes, you're not really understanding their experience. But it's hard to empathize with someone. You're choosing to put yourself in an uncomfortable position to share a painful experience. And I get your finding humor in their reaction because it does end up being ridiculous: like how could they not know, right?

    We're happy to hear that you have a great support system and that our discussion boards have made a significant difference for you. That's always heartening to hear. 🤗

  • bcfightr24
    bcfightr24 Member Posts: 90

    Good afternoon,

    I had my post op appt and everything went well. Lymph nodes were clear and my surgeon said I'm cancer free! My next step will be is to see a Medical Oncologist and then a Radiation Oncologist. The Med Onco will go over my treatment options and then I should start radiation, I believe. I do go back in November for another mammogram and then see the surgeon again in December. So far so good! I'm feeling better about the whole thing. I will do my research on the possible treatment options so I will be well informed.

    I will keep everyone posted as my appointments are completed.

    My mantra, "Stand tall, be strong, and radiate a positive glow! Cancer will NOT rule my life!"

  • chickenlovva
    chickenlovva Member Posts: 58

    Hugs to you @bcfightr24!

  • bcfightr24
    bcfightr24 Member Posts: 90

    Greetings!

    I went to my medical oncologist appt last week and basically he advised me that a combo of Letrozole and Trelstar injections would be the right course of action after radiation. I have a choice between that or just Tamoxifen. But since I'm peri-menopausal the combo regimen is better, according to the Onco. I asked how long would I be getting injections and I was told anywhere from 5-7 years, maybe 10 depending if I am post menopausal. UGHHHHH!!!!!! 😫

    I cannot imagine going through monthly injections for five years let alone 10! My anxiety is high right now.

    I have my radiation oncologist appointment this Friday for consult and just the unknown of that part of the treatment is scaring me.

    Jesus take the wheel!!!!

  • moderators
    moderators Posts: 8,652

    Hi @bcfightr24,

    We have some information on Trelstar here if you want to take a look:

    Have you considered getting a second opinion on the treatment to help you make your decision?

    Found a post from someone who was on Trelstar for 6 years in this thread:

    She hasn't signed on recently but perhaps if you send her a PM she might get a notification in her e-mail and come back to respond to you. :)

  • salamandra
    salamandra Member Posts: 751

    Hi bcfighter,

    I am also looking at a long timespan for menopause shots. I'm considering getting my ovaries removed instead.

    At this point I'm almost 45 and like 90% given up on having children, but not quite ready to get rid of my frozen eggs yet.

    So far the shots have been fine (I don't mind needles/shots and usually the appointments are in a fairly convenient location for me), but I figure getting the ovaries removed will make sense at some point and also have the side benefit of protecting against ovarian cancer.

    I have heard that some people find fewer side effects with the surgery than with the shots.

    I've never heard of combining lupron with another similar drug like trelstar, and now I"m very interested. Could you share anything about why your doc recommended the combination rather than trelstar alone?

    TY!

  • bcfightr24
    bcfightr24 Member Posts: 90

    Hello @salamandra

    Thank you for sharing your experience. As far as why I will be undergoing Letrozole with Trelstar is bc of all my results, pre-menopause, age (52), ER/PR/HER2 +, and other factors. He did not really go over ovary removal surgery. I probably would have denied it, anyways. Surgery is sooooo taxing! Had I been post-menopausal, I would have been placed on Tamoxifen alone.

    Today, I had my Radiation Oncologist's consultation. Again, a lot of information! Anywho, I need a CT scan first and then based on those results plus my results from everything else I have done, he will then determine the best radiation treatment for me to take. I am getting more and more anxious and wanting to not to continue. Has anybody felt like that? I am so tired and I feel my depression episodes are just around the corner. 😢I extend kudos to those who have had it worse and/or in late stages! Who knows how I would be had this been found at a later stage.

    I want this nightmare to end! I said it…. I should count my blessings and suck it up. UGHHHHH! Tomorrow is another day!

  • bcfightr24
    bcfightr24 Member Posts: 90

    I'm currently writing a list of questions. I've decided to call my BS to see if he will sit down with me and my husband to discuss some concerns I've been having since my RO appt. Yesterday during my family lunch, I had a meltdown, I was crying and telling my family that I don't want treatment. My anxiety is clouding my judgment and feel like I don't have enough information to make an informed decision about what is right for me. My family, of course, told me to not give up and that I am strong and can handle whatever comes my way. TBH, I do not feel strong. It was then suggested that I get a second opinion and also talk to my BS for assistance and insight.

    One main concern is how all this treatment plan is going to affect my mental health. I just finally got the right combo of anti-depressant/anti-anxiety meds and if those meds will counteract with the leprozole and/or Telstar, what am I going to do????

    Also, my RO explained that I could be looking at rads treatment on the other side of town from where I live. This is about 20 miles one way past downtown. I cannot have my husband leave work early everyday for 3-4 weeks to take me to the Southside of town. Plus, I won't drive alone. So my anxiety is heightened just for that.

    I'm feeling like I am in a downward spiral and losing control quickly!

  • salamandra
    salamandra Member Posts: 751

    oh no bcfighter, I'm so sorry!

    Does your cancer center have a mental health division where you could talk with a psychiatrist that is experienced working with breast cancer patients and our medications? Are you already taking something extra for the anxiety and/or to help with getting decent sleep, which makes a huge difference?

    A mantra I learned from these boards is: you don't have to be brave, you just have to keep showing up.

    If you feel like anxiety is clouding your decisions, it is totally legitimate to assign someone you trust to take on the mental work of making decisions for you, and then be able to focus your own attention and energy entirely on showing up. That might mean deciding to just follow the doctor's recommendations, it might mean your spouse, a sibling, or a trusted friend.

    In terms of mental health drug interactions, let your doctors guide you on that, with the involvement of an experienced psychiatrist if necessary.

    I hope your doctors understand the importance of mental health. Mine did - my first time through, they offered their recommended treatment if I was willing to try going off my long time meds, and an alternate option if I was not. If your docs understand how important your current medical regime is to you, they can work with that and hopefully offer more options.

    Why can't you have your husband leave early for 4 weeks? That doesn't seem crazy. You can also reach out to your community and network. Sometimes people who aren't even close friends are glad to be able to show up and help a neighbor or colleague or fellow classroom parent with discrete needs like these. You can also look at costs for Uber. Your cancer center may also have a social worker who can help you find low cost or free options.

    Right now, you are trying to troubleshoot and solve everything all by yourself, things that doctors go to school for years for and cancer centers hire specialist social workers and navigators for. And you're trying to do all this while even the doctors themselves are still collecting info to make their recommendations. That is an impossible task and it makes sense to me if trying to do that is multiplying your anxiety even worse.

    Hang in there! You do not have to be brave. Keep coming here to share and vent, reach out to friends, community, mental health resources, social workers, etc. Sharsheret is a great organization that can offer you free sessions with a social worker, and there are many others too. You do not have to do this alone. 💓

  • moderators
    moderators Posts: 8,652
    edited June 10

    @bcfightr24, it's understandable that you're having a lot of anxiety. There's so many changes going on, and you don't know what to expect, and there's not a lot of time to process any of it. As for the cancer treatment and antidepressant/antianxiety medications: many individuals going through treatment are on them. Your psychiatrist should be able to look up the interactions with the treatments that you are on and work with you on that. I would not be too concerned about that, though potentially you may need to alter the dosages, depending on how you're doing.

    I don't know if your psychiatrist has previously brought up the GeneSight test. It's not covered by insurance but if you have a Health Savings Account, you can use that to pay for it. It can provide your psychiatrist with information on how your body metabolizes/interacts with specifically psychiatric medications based on your genetics.

    You might find that joining our free weekly Zoom meet-ups while you're going through treatments to be an additional helpful support! There are women who can share their experiences with taking antidepressants and antianxiety medications while going through treatment. We have the dates/times and registration information available here:

    It can be such a relief to have these groups in addition to the discussion boards! And we're very flexible. You can come late or for part of group. We also send an e-mail at the end of group with evidence-based resources based on what was discussed each group.

  • bcfightr24
    bcfightr24 Member Posts: 90

    @moderators & @salamandra

    Thank you for your comments. Currently, I do not have a psychiatrist (long story) but I do have a therapist whom I see regularly. As fas as my meds, my PCP prescribes me my MH meds. I see him on July 3 and I will be definitely talking with him about my anxiety, medication concerns, and other issues. My MH meds are important enough for me to seek options regarding my BC treatment. It has taken me years to find the right combo and I don't plan to ditch 'em any time soon.

    I had my CT scan/simulation today and luckily I won't have to travel that far for my treatment. YAY! I have one more appointment with RO before starting the rads regimen. So the stress of having to travel 30-45 minutes one way every day has melted away. Now it's the stress of the actual procedure that I am confronting.

    In essence, my two main concerns at the moment are: 1) How my body is going to react to radiation treatment, and 2) How my medications are going to interact with AI + OSI. I have plenty of other concerns but won't discuss those at this time. Once I get those questions answered, hopefully it will be easier to handle.

  • chickenlovva
    chickenlovva Member Posts: 58

    @Love4All well said. I'm having a horrible time with my anxiety especially right after a chemo round. This is wonderful advice that I will definitely try!

  • bcfightr24
    bcfightr24 Member Posts: 90

    I have my follow up with RO regarding my radiation treatment plan tomorrow afternoon. I am so glad that it is going to be close to home. Next, I am focused on how my body will react to Tx and how long will I have to endure this Tx. I have been having some crazy nightmares this past week which has affected my mood…UGH!

    Let's hope for the best for tomorrow's appt.

    Will update soon!

  • bcfightr24
    bcfightr24 Member Posts: 90

    Well, I had my follow-up which actually was my "dry run". I was explained by the radiation therapists that I was to have x-rays done to ensure that all measurements are precise prior to actual treatment. The dry run did not go as planned since my measurements were not quite accurate. The therapists will have to get back with the dosimetrist to tweak my measurements. To sum up, I will be starting treatment July 3 for 16 sessions (so far). I am not sure if I will have to have a boost.

    I'm still anxious since I await how my session will go. I've been told that I will not feel the actual radiation but can have side effects. All have been explained, but with anxiety, my mind is still going awry.

  • Love4All
    Love4All Member Posts: 116
    edited June 28

    I’m sure you’ve heard it before, but try to stay present and not think about what is to come. In this moment, you are probably feeling healthy and have energy, so focus on the joy of feeling physically well. When your mind wanders into the future, tell yourself “nope, I’m not gonna think about that right now!” You may have to do it a thousand times a day, but with practice you will catch yourself ruminating on the future and stop yourself before you go too far down that road. I used to be in a constant state of worrying about the future, or thinking about the past. It took me a long time to realize that I may not be able to choose the scary thoughts that pop up in my head all day, but I can control not thinking them over and over again in my mind. I tell myself that they are not real, they are just thoughts. None of it is actually happening in the present moment. I am safe in the present moment. The more you let go of those thoughts about the future, the easier it gets.

    You can deal with whatever side effects you have when they actually appear. And, you can choose to think “I will not have any discernible side effects” just as easily as you choose to think “My side effects might be horrible”. When you start thinking about how horrible they could be, literally stop yourself and say in your head “Nothing has actually happened yet, so I’m not going to worry about the possible side effects”. Just try it. It took me time, but it changed my life for the better! I am 52 years old, and I worried for the first 50 years of my life!

  • bcfightr24
    bcfightr24 Member Posts: 90
    edited June 28

    @Love4All Thank you for your comments and suggestions. I, too, am 52 years old and all I do is worry and my anxiety is always heightened. I will take your suggestions to heart. You are so right: I am "safe in the present moment." I've made it this far and I am stronger for it.

    I am excited today because my family and I are going for a short holiday tomorrow to a neighboring city. This is the first one in many, many months. I know it is only for the night but I am looking forward to it. Finding joy in the simplest of things can make all the difference.

    "Make each day count!" (-Jack Dawson, Titanic)

  • cowgirl13
    cowgirl13 Member Posts: 782

    Love4All, "I am safe in the present moment". Thank you so much!!!

  • Love4All
    Love4All Member Posts: 116

    That’s fantastic! Enjoy your time with the family 🥰 It truly is amazing how an illness can realign our priorities and gift us with an appreciation for the small things in life ❤️! “The sweet would not be as sweet without the sour.”

  • bcfightr24
    bcfightr24 Member Posts: 90

    My radiation treatment has been postponed until Monday due to the machine breaking down. I'm a bit relieved but still anxious. I really just want to start and get through this as soon as possible.

    I had more bloodwork done and had a bone density test performed. My bloodwork was all normal…yay! Curious about my bone density results, tho.

    Have a great Fourth of July! 🎇🎆🇺🇲

  • bcfightr24
    bcfightr24 Member Posts: 90

    I went to my first rads tx yesterday and all went well. I was anxious tho and tearing up during the procedure but didn't feel anything. I thought for sure I would smell smoke coming from my skin and see little burn marks but there was nothing. My imagination runs wild. LOL!

    1 down 15 more to go!

  • bcfightr24
    bcfightr24 Member Posts: 90

    Yesterday's rads session was canceled due to statewide internet outage. Ugh!!! I'm having SE already to my first rads tx. I've been feeling some numbness, heaviness, a sharp pain accompanied by a crackle sound, tender, thick, swollen nipple/areola.

    I cried last night when I was feeling these and thought "Wow, I've only had one session and I'm already having these SE!" "Calgon, take me away!!"

  • Love4All
    Love4All Member Posts: 116
    edited July 11

    @bcfightr24 I’m sure that was super frustrating not getting your radiation treatment! Tell your doctor about your side effects. I’m sure they will have remedies for you to try. Keep moving forward and soon enough, it’ll all be behind you! You are stronger than you think and you just have to get through these next few weeks. Take it one day at a time and try not to think about things/side effects that haven’t happened yet ❤️🙏

  • bcfightr24
    bcfightr24 Member Posts: 90

    @Love4All Thanks for your comment. I did speak to my rads team and I was told that it is normal and that they would relay my SE to the doctor. I'm going to keep an eye on it and continue to journal my SE. Hopefully, it's just my body reacting to something new.

    2 down, 14 to go!

    I had my follow up with my MO today and will be starting letrozole either today or tomorrow (depending on how quickly my pharmacy gets my prescription). I should start Trelstar on August 1. I'm considering an oophorectomy but I need more information. I just don't know if I can get injections for the next 2+ years. But I also don't want to go through another surgery. I'm going to sleep on it, pray, and do lots of research.

  • Love4All
    Love4All Member Posts: 116

    @bcfightr24 Wondering how you’re feeling after the first few treatments? Did they give you anything for your side effects and have they gotten any better or worse? 🙏❤️

  • bcfightr24
    bcfightr24 Member Posts: 90

    @Love4All My SE seem to be going away. The only SE I still have is redness. However, I got my period…haven't had one since May and before that since Oct 2023. So I am in perimenopause. I started Letrozole this past Friday and this is the only SE I've had so far. Is this normal? Should I worry? Should I tell the doctor? I thought Letrozole was supposed to kill my ovaries in conjunction with Trelstar injections (in which I start on Aug 1).

  • Love4All
    Love4All Member Posts: 116
    edited July 17

    @bcfightr24 Just to be safe, I ALWAYS reach out to my doctors when I’m worried about how I’m responding to a drug. That’s what the doctors and nurses are there for. From what I read, that drug is used to treat breast cancer AFTER menopause. I know my doctor told me I would have to switch drugs during the five years I’ll be taking them (once my chemo and radiation are done) because there is one drug to control estrogen before menopause, and a different drug after menopause. I am still in perimenopause. I thought I was done, too, but I got a period right after they removed my IUD when I was diagnosed.

    I wouldn’t worry because you haven’t been on it very long. If they want to switch you to a different medication, they will. Letrozole can cause high cholesterol as well as low bone density, so just make sure you get those things checked annually (or at whatever intervals the doctors recommend). ❤️🙏

    I found a good page from Memorial Sloan Kettering Cancer Center about the drug if you’re interested. https://www.mskcc.org/pdf/cancer-care/patient-education/medications/adult/letrozole