IDC and Mental Health
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Hello @buddyfed30. I appreciate your post!! We are close in our timelines, my mastectomy was in August. I just had my second surgery for reconstruction. Sigh. I’m not a fan of surgery! You know, I think it’s fair to say that it’s kind of a lot that we’ve been through. Granted it could be worse, but it wasn’t small either. I’m so sorry you’re struggling with new fear. I think it’s pretty understandable to be affected by all you’ve gone through.
Your words “shell of a person” really resonates with me. I didn’t even realize how much I’d been struggling mentally until I stopped taking Tamoxifen a couple of weeks prior to my surgery … it’s been so helpful to see how it had been affecting me (I stopped sleeping and hadn’t had a normal nights sleep in 5 months, I kid you not, despite trying a variety of things my doctors suggested) … I was going slightly insane with exhaustion and have felt like a shell of my former self. I don’t know if it’s solely the Tamoxifen and what it was doing inside my body or perhaps a combination of all the stress of the past months, plus maybe winter/seasonal depression. Who knows? Did I have a mental breakdown and not realize it? Some days I wondered. All I know is my body and brain are finally allowing me to sleep and it’s such a relief. I’m feeling like my old self more and more each day. I’ve made an appointment with a cancer counselor for next week because I think I need some help. It’s all still so recent and I know I haven’t fully processed what happened. And I’m not able to just jump back into my previous routine as if nothing happened … that’s been a bit frustrating. I wanted to be so strong and that life would not skip a beat but it just hasn’t worked out like that for me. I guess that was a very unrealistic expectation. Sorry I feel like I’m rambling. I also appreciate others posting their honest feelings here, it does feel like we are understood and in good company!!
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@buddyfed30, we appreciate you being so open and vulnerable. You're not alone in the vacillating between fear of recurrence and fear of living. Oftentimes we hear folks share for the latter that there's anxiety around quality of life and other unexpected changes they don't know how to anticipate. Have you thought of joining a group with other early stage breast cancer patients? That can be helpful in getting support, and processing a lot of the emotions you're going through. Who would understand better than folks going through the same thing themselves? We actually offer free weekly meet-ups over Zoom with members from our boards. If you're interested, you can find the date/time and registration information here:
Hope this helps! ❤️
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@buddyfed30 I can totally relate to your emotional issues. Although, my tumor is quite small and prognosis is good, my mind ran with the negative what ifs. I have a great support system which really is helping me deal with the depression and anxiety that is a part of my world. Take inventory of the support systems in your life and lean on them. Cancer is not a fight can be fought alone.
As far as working, have you thought of taking a leave of absence or FMLA? Knowing that you can take some time off to concentrate on getting healthy, may help your state of mind.
Again, you are not alone! We are here for you and continue to have faith and take it one day at a time. You can use my mantra: "Stand tall, be strong, and radiate a positive glow! Cancer will NOT rule my life!" ☺️
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Newest update: I had my follow-up yesterday with my breast surgeon who confirmed the negative results of the genetics test as well as my MRI. He did indicate that he wants one more ultrasound/sonogram to confirm there will bo no other surprises. I (actually we-me and my hubby) decided that a lumpectomy would be the best course of action to take. It has been scheduled for April 26th. He explained the procedures that will take place and that is a bit scary. He talked about wire localization and fluid injection.
Now knowing the schedule, I am a bit scared. I know I should be relieved that results could have been a lot worse but anyone who suffers from anxiety, understands.
If anyone out there who has had a lumpectomy, please share your experience! TIA
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Hi bc, I had a lumpectomy and it was an easy surgery. I also had a sentinel node biopsy as part of the surgery so I can't say anything about the SNB done outside of the operating room. The thought of the surgery is so frightening/horrible but my experience was very, easy. I wanted to cry as I was changing into the surgery gown. It's over soooo fast and you just wake up. Good luck and I will be thinking good thoughts for you.
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I've had two lumpectomies and they were fine. I was really tired after and mostly just wanted to be left alone.
Two things I wish I knew the first time: The surgery is the start of another round of waiting. Waiting for the pathology, waiting for the margins, waiting for the oncotype results; How your body looks after the surgery will change a lot. I was really worried about the shapes and scars. The doctor told me to just wait it out, give my body 6 months to a year, and then see how I felt. She was right. Things healed up and I was very happy with the final results, even after radiation.
You've got this!
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Thank you for sharing your lumpectomy stories. I felt like crying when I was changing for the MRI. I feel like crying as I write this. It's the waiting that is the scariest. I know I will be crying the day of surgery. Like I told my surgeon when I had my gall bladder removed, if I died on the table, I promised him that I would haunt everyone who was in the OR so he better take care of me. 👻 LOL!
My mind runs away with every thought no matter how absurd it is. When the doctor was talking about the wire localization procedure, all I could think about was me walking around with wires flopping around like some out-of-whack robot.
I know I can do this! If anyone has a story to share, please do. Thanks again for the vote of confidence. 💝
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Any type of surgery is scary, @bcfightr24, we understand! This is a great thread with lots of resources and advice to help you prepare for the before and after:
You've got this!
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bc, just keep crying all you need - and know that we are here in your pocket. It will get better.
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I am grateful for the recommendations! Thanks @cowgirl13 & @moderators
I got scheduled for 4/17 for the ultrasound and pre-op testing. Again, it's getting real (again)! The more I move forward, the scarier it becomes and the anxiety gets more intense.
I do have a question…Has anyone ever got a weird feeling when talking to someone about what is going with you and they come back and say, "Oh yeah, so-and-so went through that and they are doing fine and you should not worry." I kind of feel dismissed. Is that normal or am I making more out of it than I should?
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Yes, I have had friends say odd things to me. One friend told me about a women she knows who had a Prophylactic mastectomy and said told me "this woman told me it's the best thing ever, you will love it". REALLY, I am going to LOVE having a double mastectomy due to cancer. Another friend said, "You will get your new boobies and we will back out and about showing them off". I know people mean well, but I agree, it's dismissive. The deeper I get into this, the more I realize NOBODY can understand breast cancer unless they, too, have been through it.
Early on, I told people don't pity me and DO NOT tell me stories of others you know who've been trough it. I have my care team and realized if I needed advice, I would come here.
Good luck, stay strong and tune out the dismissive comments.
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I'm so happy to see this thread. I've had many major depressive episodes and am on preventive medication for life. Whatever you're feeling is genuine and part of your life. I told very few people (I was retired so it was easy to do that). Most of my support came from this site and I felt I was with people who understood. I handle anxiety by trying to concentrate what is happening right now. It may be rough down the road but right now I'm ok and able to live my life.
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Thank you @wren44!
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I had a lumpectomy in November. I am also Stage 1. Take a deep breath because the waiting is the worst part of it. My lumpectomy went fine, the scar which is on the edge of my nipple is not really noticeable. I also had a sentinel node biopsy, I did have some trouble with that. I developed a seroma, and had to have it drained several times. However I am overweight and have some fatty tissue there, so I am not sure if that contributed to the fluid build up. But all and all it went fine and it all healed up. Let me know if you have any other questions.
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I had a lumpectomy in 11/2023 with 3 lymph nodes removed. I had stage 1A invasive. There were swelling in the armpits where the lymph nodes were removed but the site of the lumpectomy removal was ok. From doctor's advise, I bought a bunch of front zip bras and dug up some front button shirts. I also bought some honest baby wipes in the days that you cant shower. The operation was ok nothing, and the pain after was manageable for me. The worst for me was the swelling afterwards, so compression is key on that one.
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To all who responded, thank you!!!
I thought I was making a mountain out of a mole hill. I feel better about that.
Thank you for sharing your experiences about your lumpectomies. I am so scared of the edema especially in my arms. My late grandmother had a unilateral mastectomy and had edema in her left arm for over 30 years.
I am getting depressed all over again. The closer it gets, the scarier it becomes. I just want this over with!!!
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I had my ultrasound and pre-op testing back on the 17th and so far everything looks good. I am scheduled for my lumpectomy on 5/3. I'm still scared. Still worried about my treatment options and what the pathology reports will say.
BTW, today is my birthday
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Happy, happy birthday @bcfightr24! We hope you had a great day. We're wishing you the best of luck with surgery and results!
The Mods
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Thank you for the birthday wishes @moderators! I had a pleasant day.
As my surgery draws near, my anxiety is ever so heightened. I cannot seem to get a grip. I have tools to combat my anxiety, yet they prove to be futile. Sleep is interrupted nightly with odd dreams and nightmares. I am exhausted. As I write this, tears are welling up and I feel helpless. I want this to be a nightmare and I wait to awake, have a good cry, then go back to sleep and go on with my life.
As I look through my paperwork and results, I begin to (over)think (which is never a good idea!) I focus on my genetics test results. Yes, it reads Negative on all 70 genes and BRCA1 & 2, however, I am thinking to myself what did I do to cause my cancer? I research what could trigger cancer when you do not have the gene mutation and that was not a good read. My anxiety and depression has overcome me.
I can only imagine how extreme this is going to get as the week progresses.
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Dear @bcfightr24. I’m really sorry you are struggling. It seems normal to feel anxious before surgery. And it’s hard not to work ourselves up with research. I do it myself. Some research is healthy and productive, some not so much.
I joined the BCO Zoom support group for the first time just before my mastectomy and it surprised me how much it strengthened me and calmed my nerves … if you have a chance to join, I encourage you to. It’s the one called In Treatment …
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Thank you @needs.a.nap for your advice. I will surely look into it.
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@bcfightr24 researching online does help but can also hurt. Prior to my BMX I found relief and relaxation with guided imaging training. I listened to audio files days leading up and used those techniques on day of surgery. Helped me a ton!
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needs.a.nap, I seem to be living much of your 6/2023 diagnosis. If you don't mind, I have questions. I'm trying to plan ahead since I'm my Mom's only caregiver. 1) What was your recovery time for the mastectomy? How long until you could do things such as cook, vac & laundry? 2.Would I require additional help for myself after a mastectomy & approx how long? 3. Having gone through a single mastectomy, what are your thoughts on handling a double? 4) Do you know if they typically do IV chemo after a mastectomy if the cancer has not spread beyond the breast? I hope these questions make sense. My mind races when I should be sleeping. THANKS!!!
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Hi @jes_2007. I’m really sorry you’re going through all this again (I read your other posts to catch up). And my mind does the same thing, keeping me up too late, too often … thus my “name”. But I took something already to help me sleep and I’m getting groggy … I may have to reply more coherently tomorrow. I do think you should consider putting these questions out there as a brand new thread for more input from others, especially because everyone has such vastly different experiences with mastectomies and recovery.
I’ll try to answer your questions, starting with #4 … I believe for many early stage hormone positive cancers with no lymph node involvement, hormone therapy is more often the recommended treatment than chemo.
After my mastectomy they sent a sample of my tumor to get Oncotype testing. I believe Oncotype testing is used for early stage, hormone positive (ER/PR+) and Her2 negative tumors only. That result helps determine the treatment. My cancer was not particularly aggressive, it was grade 2 and my Oncotype score came back at 16 so chemo was not recommended, but hormone treatment was (I’m on Tamoxifen). I really don’t know how common it is to need chemo without lymph node involvement.
#1 … I had a lot of restrictions because I was having reconstruction and had a tissue expander put in. Without reconstruction, I believe the healing and restrictions are for a much shorter duration. I think I wasn’t supposed to lift more than 5lbs for the first couple of weeks, and I was not supposed to lift my arm up or move it out (keeping my elbow tucked in mostly) for 6 weeks and no repetitive motions. I kept forgetting and my surgeon threatened to put me in a sling to remind me. If I had a left sided mastectomy I’d probably have been able to cook and chop stuff up way better because then I could still use my right arm but I’m pretty awkward with my left arm so I didn’t really attempt much more than making a sandwich or eating cereal in the beginning. I’ve read the suggestions of others to put everything you’ll need on the counter, within arm’s reach and that’s really helpful to do if you will be alone.
In the beginning you’ll have a drain or two and you really need to take it easy and limit your use of that arm/side while the drain is in. I believe I had my drain for 10 days or so.
I felt so much better after 3 weeks but still needed to limit my arm movement, so I don’t think I did much in the way of laundry, or vacuuming (or I did it carefully using my left arm).
#2 … I would say yes, absolutely, at least for a couple of days, a week would be even better and even beyond a week would be so nice, if at all possible. Especially if you need to take any narcotics in the very beginning or at least until anesthesia is fully worn off. Even little things like opening prescription bottles was surprisingly difficult at first! And the first shower I took after 48hrs I was quite weak and needed help. And I couldn’t really strip my own drain very well because it was around my side, and I couldn’t use that arm well to grasp it. There’s a lot of awkwardness at first but we all managed somehow, with help.
#3 … I can see the Pro’s and Con’s … but I think I would have had a hard time. Yet, so many women have managed.
Ok, eyes are drifting closed … I’d better say goodnight.
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Just had my sentinel lymph node injection this afternoon. OOOOFFFF, what a feeling! It stung and burned as it was injected (about 5 secs). I did not like it one bit. The tech was so nice and she let me squeeze her hand. She reminded me to breathe.
I'm scheduled for surgery tomorrow morning. I have to register at 7am and then have wire guides inserted at 9am and surgery at 11:30am. All that and fasting. It is going to be a long day!
Gonna rest and prepare for tomorrow. Good night and God Bless!
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Hello @bcfightr24. I wish you all the best for tomorrow … may the day go by fast and your recovery be smooth! I’ll be thinking of you. I hope you can get some sleep tonight. Good night
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@bcfighter24 lm new here, been lurking for months and finally joined. I have severe depression and anxiety even before all of this. Sitting with an Ativan as I type. It's so difficult to navigate this new world, especially with anxiety and depression. I'm very appreciative to be able to be a part of this amazing sisterhood! I just finished 1 of 4 TC chemo and my BCN has over 100 messages on MyChart from me. Every little thing and I'm messaging her! I sure hope this gets a bit easier. You all are so brave and amazing. I look up to you!
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I’m really glad you joined us here @chickenlovva. Welcome! But I’m sorry you are coping with all of this … it’s not easy on our nerves and our emotions, going through this. It’s so helpful feeling understood by others here. That gives us strength, knowing we aren’t alone!!
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Thank you @needs.a.nap! I'm sooo glad I'm not alone anymore!!! Love to all of you guys!
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Welcome, @chickenlovva! We're glad you decided to join us and become a part of our community, although we hate the reason that has brought you here. We know it's hard, but reaching out for help and connecting with others, like you're doing here, can make a big difference. Please, let us know if there's something we can do for you. We're always here!
The Mods
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