Help I am struggling today
Hello everyone. I have posted several times but never started a topic. To give you my background I am 37, married to the most wonderful man who has given me so much love and support through this, and I was diagnosed with Bilateral IDC in January. In my right breast I felt a lump and after mammo, ultrasound, biopsy I was told it was IDC about 2cm and clinically staged at IIa. After an MRI it was found that I had another tumor in my left breast IDC as well and about 1.6cm Stage I. Both were Grade 2 and the right was er+ and the left was er+/pr+. I started neoadjudavant chemo, dose dense 4AC+4Taxol Feb 19 (exactly one month after my mammo) and finished May 28. On June 30 I had a bilateral mastectomy with immediate recon with TE's. The path report following surgery was no positive nodes out of the nine that were taken, the right tumor had completely disappeared and the left had shrunk to 1.2cm. All good news, right? My last follow up with breast surgeon was Monday and he was very pleased and scheduled me to see him in 4 months. As I was leaving his office I became depressed and nearly cried all the way home. I had my first post chemo/surgery follow up with Onco today and he prescribed me Tamoxifen and said that my prognosis was excellent and that what I was left with after treatment was Stage I cancer but I am considered cancer free at this point. He said that hormone positive cancers can and do reoccur and hopefully the Tamoxifen will keep that from happening. Also a positive report, right? I left his office depressed after I stopped in to say hi to the chemo nurses that I became so close with during treatment and I have been crying all day long. I am terrified of reoccurrence and have no way how to transition back to life. I took a leave of absence from work and will return in a few weeks. It seems like everything was moving so fast and now it is like ok move on with your life but don't forget that this could come back and ruin everything. I did not cry like this during treatment so why now? Does it ever get easier? Everyone I know has been so focused on my cancer for so long that I don't know how to move on like they are doing. They all think that all is good now and I am terrified that my life will be filled with fear of reoccurence. Sorry this is so long but I really need some words of advice and to know if others felt this way when the bulk of treatment ended. Thank you!!!!!!
Comments
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It is not uncommon to become depressed after treatment. You feel like you have been actively fighting and now what?
Tamoxifen is powerful - consider that you are still fighting.
Try to get some exercise in - it makes you feel better emotionally and physically
I did a lot of self talking reminding myself to enjoy today - taking the focus off the future, which helped.
I hope you feel better soon.
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Boy, do I know EXACTLY where you are, Nene! I never felt so alone in a great big world as the day I walked out of the Cancer Center and my treatments were all done! You'd think it would be the happiest day of your life, wouldn't you????? Here, I had made it through horrible chemo, mastectomy, burned to a crisp during radiation, and now I was done. And crying my eyes out. I felt like there must be something else I could do to keep this from coming back, like "booster chemos" or something. I didn't like the "I'm here if you need me" from my oncologist. I didn't like just having a bottle of pills for the hormones. I didn't like that I was going from being there every single day (for radiation) to 6 weeks down the line. Talk about "cutting the cord!!!!"
But it has now been 3 months since my last treatment of radiation ---- a year since I started all of this. I must say, it's been hard "getting back to my life." My old life just doesn't seem to be there anymore. I live this new life with constant fears of recurrence. But. . . . . I must also tell you that it does get easier. And I do count my blessings each and every day and try to find a joy and purpose in each and every moment that has been given to me. You will be ok!!!! Fix your favorite meal, go to your favorite places, go out with a friend, spread some sunshine!!!!! Don't be afraid of the day God has given to you! Embrace it and enjoy it!
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nene ~ I think what you're going through right now is very normal. The way it was described to me is, when we're dx'd and in treatment, there's only so much our minds can handle as it's happening. So, we tend to compartmentalize a lot of the grief and sadness and just get on with what has to be done. Then, suddenly, the tx is over, and all those emotions that have been suppressed for months start to bubble out. Thank goodness a social worker gave me a heads up on it, because I had an absolute meltdown on a vacation about 2 mos. post chemo -- set off by a display with pink bc awareness t-shirts of all things! I came unglued because I thought at the time I would never be able to wear cute little t-shirts like that again, and I thought it was positively stupid that women were grabbing them up and thinking they were doing something to fight bc, while the vendor was probably making far more than was going to bc. So I know how those emotions can come out of nowhere and really take us by surprise.
As a practical suggestion, I know that some facilities occasionally run survivor workshops to deal with this and other issues that affect us (at least our local one does), and someone also recommended a book on another thread that I'll try to find for you. I'm also really in favor of talking to the social worker or psychologist of whomever your facility has on staff for that purpose. The two times I've done that, I got great insight and coping strategies.
But just know you are not alone! What you are going through is part of the process of healing, and it absolutely does get better. (((Hugs))) Deanna
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Dearest Nene, Wow, I had the same diagnosis as yours, only I was staged 2b because I had one lymph node that was positive. I am almost 5 years out and doing absolutely wonderful. You will too. I had very aggressive treatment like yours and I also had a hysterectomy. I am currently on aromasin., I have no boobs, no uterus, but I have more energy now than I ever did before breast cancer. God is so good. Just keep praying, surround yourself with wonderful family and friends and always look up and know that the Lord is surrounding you with his love. I also have a wonderful husband and two fantastic sons. Only God knows when our time is up, so live life to the fullest each day. It will get easier, I promise. God bless you, Kathy
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Gentle hugs sweet sister......I hear you loud and clear......God bless you and wrap you in His love......
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Dear Nene again, I just wanted to make sure you knew that I also had bi-lateral breast cancer. I had a 2cm tumor in the left and a 1.5 cm in the right breast. Wow, our situations are so similiar. Hang in there. I celebrate my five years in Nov. God bless you, Kathy
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Thank you so much ladies for posting (and so quickly)!! I feel better already. Really rough day but I feel so much stronger knowing you are out there and have been there.
Thanks again, Jenn (nene)
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Kathy, thank you for sharing your story with me....it is amazing how similar our situations were! I think you may be the only other person I have seen on this site that presented with bi-lateral BC instead of having a later recurrence on the other side. I celebrate your five years with you and hope to join you there!
God Bless you, Jenn
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Dear Nene, You are so welcome!!! I thought we were a rarity, too, but believe it or not there are quite a few out there with similar diagnoses. You are going to be just fine, I know it. God bless you!!!Kathy
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I understand. the day I saw the doctor and was told I did not need to come back for 4 months. I went out to my car and cried. I felt so alone. putting your life back together is difficult. start small. exercise has helped. start slow and set short goals and each time you reach one you will feel strong and in control. fears of recurrance are normal. tell someone who you trust. saying it out lound may help. dont let all the fears and negative thought stay in your head, voice them to someone. find a support group, it can help. also know that you can come hjere for support.
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I went through the same thing honey. People thought I was insane because I was actually sad when chemo was over. I had to make them understand I didn't want more "chemo" I just felt secure while it was going on that the cancer couldn't come back. There was about four weeks between the end of chemo and my first oncology appointment when i would get the tamoxofin presecription and I had nightmares every night. Horrible vivid nightmares of being in the surgeons office and him telling me it was back and I wasn't going to make it this time.
When I saw my oncologist she asked me how I was. Out of reflex I said "great" and then I said " no that's a lie, I'm horrible and haven't slept in a month and I am afraid the cancer is coming back and I am dying and I just don't know it."
She sat there and talked with my husband and I for probably an hour. They also were able to get me a list of therapists who specialize in post treatment breast cancer patients.
You are normal my love, like others have said talk to people who you trust and you will get through and start to feel better.
Take care
Robyn
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Thanks Anne and Robyn for posting! Robyn-I had chemo first and then I waited 4 weeks to have surgery so that my counts could rebound and then I did not see the oncologist for Tamoxifen for a few weeks after that so I could heal. All in all it was about 7-8 weeks after chemo that I started Tamoxifen and I freaked out about that too but my oncologist told me it is not that kind of drug and that starting it a day after or several weeks after did not make a difference. Thank you both for putting into words how I am feeling. Every day it gets a little better as I take baby steps back to my life but some days I still feel like I am walking in quicksand. I am seeing a counselor but I do not know how much experience she has with BC or cancer patients in general and the one guy in the area that was recommended to me by my breast surgeon did not take my insurance. It is always something right? I am grateful to you all though for the support and wisdom.
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Oh yeah, we're all there with you. It's tough, after treatment is over, the feeling of being all alone with your fear. My hospital, provides me with a psychologist, to talk to about every two weeks, and I don't know yet if it helps, but it couldn't hurt.
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nene, I went through a few difficult months after treatment ended too. It was a shock to be turned loose with a 'see you in three months' after the intensity of diagnosis and treatment. I was diagnosed with bilateral BC too. My surgery was in January.
I turned inward. I didn't want to socialize, and didn't want to go out. I spent hours obsessing and reading breast cancer research online. My very supportive hubby went with the flow. He rented movies and brought in take-out and occasionally coaxed me out of the house. I allowed myself to grieve and to emotionally get through this huge thing that had happened to me.
About a month ago, something just clicked. I started exercising and felt much better. Since then, I treated myself to a manicure and pedicure and slowly have started going out again. It took me five or six months to work through this.
Please know that you are not alone. Give yourself the time to grieve and come to terms with what has happened. Find something that is soothing or relaxing or comforting and give yourself some self-care. I found great comfort in a cup of tea or a simple dip in the pool.
About reoccurence, I have already gone through getting two suspicious areas checked. Both were negative. And, yes it was scary. I have since come to terms with reoccurence. It ~could~ happen but worrying about it won't make it ~less likely~ to happen. I decided it was time to really enjoy life and seize the joy from each day.
I hope you will find comfort in my story. Gentle hugs from me to you. I will pray for you as you go through this difficult transition time. You WILL get through it!
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Thank you dancingneedles! Obsessing and spending hours online researching must be a stage that we all go through after treatment. I have had days where I do not want to leave the house but mostly I want to go do something each day even if that is just lunch with my girlfriends. I only have a few weeks before I return to work full time and this time off has hardly been a vacation. It is time to go back, though, and I hope the stucture of work comforts me. Can you tell me, if it is not too personal, did you have a bilateral mastectomy? Is so were your suspicious areas in the breasts? I feel like there is nothing left there after my surgery except my expander. To go through that surgery and then have to have areas of the small amount of tissue I have left biopsied would be devastating. I am trying to put reoccurence out of my mind. I have done as aggressive a treatment as they could give me and I am relying on that working. Your story is both comforting and inspiring to me. Thank you for sharing it.
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I to feel your pain. I am part of the group known as triple negative!!!!! I am 1/2 way done with chemo then after that I get to do my radiation. Then I get to take NOTHING..... Scares me so bad. After that I guess I WAIT N SEE....I am 36 years old and a mom of 3.... I have heard the more days behind us the easier it gets. Hope that is true.....
GOD BLESS YOU ALL
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I know exactly how you feel. My treatment is coming to an end soon as I finish with rads on August 4th. I'm scared and ask the same question over and over - is it enough. Even though I will be doing Herceptin for the next year and will be monitored real close during this time, I am having some anxiety issues as well. My rad onc told me that this is absolutely normal. For a while, you are caught up with your d/x, tests, treatment and all of a sudden, it is over. My rad onc. has recommend that I talk to someone outside friends and family - a professional and I'm going to take him up on his offer. Just know that you are not alone in your feelings. I"m sure all of the ladies on this board has felt the same way one time or another. Life will never be normal, but it will be a "New Normal". Hang tight sister - we are all here for each other.
(((Hugs)))
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Sometimes I feel very alone & isolated. Speaking to someonrem professionally would probably be very helpful. I just want to be around people.
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One thing I found (looking back) that was helpful was when my husband forced me to go out. I went through a period of time when I not only didn't want to go out, but I didn't want to shower or basically get out of bed unless I absolutely HAD to. I HAD to go to work so I put on my "have to function now" work face. But once I was home I would quite literally shut down. One Saturday when I was planning on staying in bed and I thought he was taking the kids out to run errands he said, " You are going to get cleaned up and get in the car. We are going out for a walk and then to visit our friends"
I was never so mad at him in my LIFE! I was mad most of the hour long ride from NH to Minute Man park in Concord MA in the FREEZING COLD. (my chemo ended in March and it was STILL winter by me) but in spite of myself I did feel better after getting out and walking and by the time we got to our friends house (very dear friends we have known since college) I was in a fairly decent mood.
At the time I felt DH was being uncaring and insensitive but I really needed a good ass kicking to get me out the door. I was becoming afraid of living and I was really dwelling on fear of everything.
The moral of the story is, you need to sometimes take a hard look at what your behaviors are and go outside your comfort zone if you aren't lucky enough to have someone in your life to take you in hand and force you to do something like this. Its very very hard but I think you can really get yourself into trouble because its so easy to let the fear and the very reasonable depression over what you have lost and been through consume you.
Love to all,
Robyn
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I am exactly where you are all today. Still in my pajamas, thinking about cancelling an eye appt, because it really doesnt matter if I get new glasses. I feel I should plan a great vacation with my DD but I don't have the energy. I am two weeks out from my last tx. I go next week for a follow up, but I don't want to have any more tests! Convoluted huh?????
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Jess,
Its completely understandable where you are. You are tired. I found it took about a month from my last Taxol to really feel good again. I think we all have had it with being poked prodded having stuff injected, having appointments- its a lot to deal with. Give yourself a break and rest as much as you can.
Love Robyn
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robyn,
Thank you for your support.
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nene,
Sent you a private message....
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