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Topic: How has your BC experience changed you

Forum: Share Your Experiences Of Life After A Breast Cancer Diagnosis —

Share your experiences of life after a breast cancer diagnosis and offer advice on how you cope with life's daily challenges, including how you develop a new daily/weekly routine while you deal with breast cancer.

Posted on: Nov 18, 2014 08:26AM

Moderators wrote:

We want to hear about how your experience of BC has changed you and how/in what ways is your life different now. Have you made lifestyle, relationship, work changes?

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Posts 121 - 136 (136 total)

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May 8, 2019 04:06PM hapa wrote:

Tammy - when I was first diagnosed I had the "why me" thoughts too until I read what someone on here posted. She said "why not me?. This stuff has to happen to someone, why not me?" For some reason that made me quit asking "why me". The bad statistic happens to someone, this time it was me. There is no reason why and even if there were it is unknowable.

Dx 12/14/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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May 8, 2019 04:16PM HikingLady wrote:

TammyKh I send you hugs of compassion. We all hate cancer. This is a safe place to vent and tell the truth about what you're going through. No matter the brave face, every one of us has dark times. Staying positive is easier for some people than others. Even the cheeriest faces, and people who don't have breast cancer might have another secret or hidden or unacknowledged challenge. Ours is a super horrible one, for sure, though. It's totally fine to admit your feelings.

Why me, you ask? Good question. Your doctor gave you no answer---I think there really is not an answer. Of course, we all want there to be a magic reason. But, there is not. This horrible disease does not play favorites. Thin, vegan marathon runners with perfect health choices get breast cancer, and all of the genetic and environmental possible correlations are really still mysteries. So says my oncologist with a very firm but also empathetic tone.

Consider discussing your despair with your PCP. Depression can be temporary, and life events can suddenly make it pop up. You might benefit from antidepressants to get through the dark tunnel for awhile, plus talk therapy. Consider the fact that you've gone through a horrendous trauma and shock, and there will be collateral damage, on your personality and your emotional well-being, as well as on your body. The oncologist treats the cancer, and we are left with the assaulted body and psyche to deal with. Now you have to look out for healing your inner self.

Ask your oncology clinic what they can offer as far as survivor support. Classes? Group therapy? Referrals for same?

Attach yourself to all the "positives" you can possibly gather. Friends, exercise, chocolate, nature, comedy movies, music....whatever you can pour into yourself to counteract the dark stuff.

I have stable mental health and no depression. However, going through treatment was the most challenged I'd ever been, and it rocked that stability and my persona. I now feel more vulnerable. Hyper aware of Life. It's taken all my lifelong-acquired mental health tools to put one foot in front of the other some days. Oh, yes, and my FIRST breast cancer was at age 45. I WAS cured. This was a new one; completely different in all ways and unrelated.... in 2018. So, I am living proof that we get through it and can move on. However, that first time sent shock waves through me, emotionally and psychologically. This time, again.

Last May, when I met my breast surgeon, I researched her online, of course. In about two minutes, I learned that she, at age 32, had had breast cancer, BMX and then chemo. When I met her, we discussed this--she is now 36. When she was diagnosed, she was beginning a breast cancer fellowship (=extra surgical training after residency) to become a super-qualified breast cancer surgeon. Yes, this is ironic, for sure, she agrees. She had her eggs harvested before chemo. She got married after chemo was over. She finished her fellowship. She had a baby three years later. She looks terrific. She's the most compassionate doctor I've ever met, since she travels now in life with this huge empathy and first-hand knowledge of her patients' vulnerability. Her cancer, after surgery + chemo (+ maybe Tamoxifen, I'm sort of assuming, but never asked) is considered cured, and she's moving on. I know it shook her up; she was candid about that. But, here she is, giving to others and sharing her excellent skills.

I have a friend who is 32 and had her surgery and chemo and also radiation in the past 10 months. She's looking forward to the future, and does want to have children with her partner. She's shaken to the core, but she managed work and many other obligations, and got through treatment; now is moving forward. She recently shared with me that her friends ask, "So, now that you're finished with that surgery and chemo stuff, are you perfectly fine now?" NO! Of course we're not perfectly fine after something this traumatic. She says that no one around her can possibly understand how the reverberations of all this continue, even after you're finished with 'active treatment.'

I share these stories because each of those young cancer patients certainly had absolutely horrified and terrified reactions to going through this totally unfair thing that is cancer. It doesn't pick favorites. It's awful to be your age and have to face this, absolutely no question about that. I think I'm sharing these two stories in the vein of "it gets better." Each of these young woman felt despairing at times, but as time passes, they're doing better, they both report.

I send you sincere and warm support.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 9, 2019 10:02PM Mavericksmom wrote:

I don't know how to get my first dx on my bio. I was diagnosed with IDC, 1 cm, in 2003. Lumpectomy, re-excision, chemo and radiation. If it could go wrong it did, the whole experience was horrible.

This time my attitude was great at first when diagnosed in Dec 2018 with 1.4 cm ILC (also found LCIS after surgery) in spite of the fact that I was in shock that I got breast cancer again after 15 1/2 years.

I was denied a BMX and pressured to have a mastectomy with DIEP reconstruction. 

I was doing ok mentally for months. Now, four months post surgery, still having wounds on my fake breast that aren't healed, and three weeks on Letrozole, I feel nothing good. I am so depressed and can't seem to snap out of it. I HATE my body, hate my job, nothing seems to spark my interest, nothing inspires me.  I feel I have given up.  I do eat healthy foods, but I am grossly over weight and after a lifetime of trying so hard to exercise and stay healthy, I just don't care anymore. 

I am not going to end my life, but I sure don't enjoy it. I tred to trick myself into snapping out of this, but I can't. I go through the motions, no one knows how I feel.  I am normally chatty, now I don't care to talk.  I still try to smile at work, but the whole time I am there all I think about is retiring. I am the only one on both sides of my family (siblings and in-laws) who is still working. My husband is much older than me and has been retired for 19 years. 

I wish I could blame the Letrozole, but it isn't mentioned as a side effect on the long list my doctor gave me.  

Has anyone else gone through this?  I used to keep a journal, I loved to write.  It is over 400 typed pages.  I always felt better writing things down.  Now I don't even have the energy or will to write. This doesn't feel right. I feel trapped in my job because I am 66 and had cancer twice and replaced shoulders. No one would want to hire me.  I have been at my job for almost 30 years. I feel worthless. 

What is happening to me?

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May 10, 2019 05:36AM Mncteach wrote:

Mavericksmom— you are depressed!! I know that feeling only too well. I got hooked up with a great therapist (he facilitates our support group as well) and we keep a close eye on my meds. I was just about to go off them as I was doing better when I got the cancer diagnosis. I hadn’t seen a therapist in a couple years and it was mainly seasonal but spiked around back to school time so I usually stayed on it year round, but had done so well at back to school time my primary doc and I considered stopping— so glad I didn’t! We almost raised it at point but I was able to talk through the issue. I too had wounds that wouldn’t cooperate. I too looked at these ugly scars and cried. I can’t say it enough, please find someone to talk to and get meds too if needed! Sending love and support

Dx 8/31/2018, IDC, Right, 1cm, Stage IB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/31/2019 AC + T (Taxol)
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May 10, 2019 06:08AM Salamandra wrote:

Hey Mavericksmom,

I agree that what you write sounds a lot like depression, and you deserve to treat your mental health as seriously as your physical health.

Being pressured into decisions about your body, being trapped in your job, dealing with the whole cascade of issues and emotions from this illness, it's a lot. It's ok to be unhappy, angry, resentful, scared.

But the trickiest thing about depression is that it usually tells you that how you're feeling now is never going to change or get better. Don't believe it. Give your mind the healthcare and support and time it needs to heal, just like you would do for your body.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 10, 2019 09:30AM HikingLady wrote:

Mavericksmom Good advice and thoughtful guidance from the two posters above me. We hear your despair. Usually your PCP would be the one to talk to first and bring this up and ask for antidepressants. If that provider is not listening to you, go to one who is, whether that's your MO or another new doctor. This is serious, and it's the hardest to self-advocate when you're so low. You've been through TRAUMA. It leaves a lot of collateral damage. Take good care and keep us posted. This is a safe place to share.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 10, 2019 04:47PM - edited May 10, 2019 04:49PM by TammyKh

HikingLady - Thank you for your kindness, understanding and supports. You got me! I don't want to lie everyone but here is the only place on the earth where I can share, vent and tell all the truth about my cancer diagnosis and feelings. I DO NOT want to make my beloved people worry about me. I keep smiling, showing positive and always replying "I'm doing great!" when asked "How are you?" My dad passed away, so my mom, my sister and my niece are everything to my life. I have made my mom worry a lot since I was diagnosed with cancer, so I have always lied her that I'm okay, I'm healthy every times I call her (I'm living far away from my family and she is living with my sister). I show my colleagues, manager, boss - all of them my positive and optimistic spirit when they greet me. Everything is fake. Fake! Fake! I wish I could tell them that I'm not okay, I'm not feeling good, I'm scared, I'm depressed. I'm not comfortable to tell everyone my cancer diagnosis, so just my family and a few of my best friends have known it. It would be my hidden secret forever. What I'm doing right now is that I have tried to show them I'm healthy, I'm still good though, cancer is NOT the matter though! And never let them see my tears.

Mavericksmom - I totally understand your feelings. We are on the same boat. I feel trapped in my job cause I hate my job but it offers me drug coverage and excellent insurance benefits, I'm normal chatty but now I don't want to talk, meet or make new friends. The only person I am talking with is my 3 year-old niece who is helping ease my negative feelings. She is so adorable and makes me forget my this difficult time. Honestly, I don't enjoy my life although I have tried to be positive as much as I can. It is not the life that I want to live in. I'm so sorry for showing you my negative but I don't want to lie you. I really hate my life after a cancer diagnosis.

Dx 10/24/2018, IDC, Left, 4cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 1/11/2019 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 4/1/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 10, 2019 05:39PM - edited May 10, 2019 05:41PM by Mavericksmom

Tammy, thank you for your post! We are so much alike! The only time I feel happy is when I am around my 5 yr old grandson and 3 yr old granddaughter! My grandson sat beside me after my surgery and said “Grammy, I am going to keep on smiling until all your "ouchies" are gone!" He is so stinking cute!

That said I had a less depressed moment early this morning when I sent a message to mybreast surgeon and told him, in a very respectful, non angry manner, how his denial of a BMX effected my life. I know it is too late for me, my surgery is over and I don't plan to have another, but it may help another woman. At least I hope I gave him food for thought.

I CAN NOT take off from my job for a planned surgery until after I retire. That won't happen for 3-4 years now as this was a huge set back. Many people don't understand but I am not “marketable" now, nobody is going to hire a 66 year old woman who had cancer twice and has two replaced shoulders! I am damaged goods. I can't retire until I pay back a good deal of debt. I NEED to keep my job and that means not taking off from work. In a perfect world this wouldn't be the case.

Doctors see the science but they don't know us, our home/family/ financial life. They see a cancer patient. It is easy for my doctor to say “we don't remove a healthy breast!" It isn't his breast! He seemed so confident that I wouldn't get cancer in the other breast. I wonder, was that confidence for now, for a year, two years, five years, just how far does that confidence extend? It better extend a long time because as stated, I won't have mammograms or ultrasounds until after I am retired. I guess my odds may be good that nothing will even show up then. I am not being defiant, but my hands are tied. My doctor and his science sealed my fate! Good or bad. No one can tell me that by removing my “healthy breast" I wouldn't have lessened the chance of getting it in my right breast by 90% or better. That is science based too!

I know I am depressed. I was on an antidepressant when I had cancer the first time. I will ask my PC doctor for something if I can't shake this feeling off.

Thank you to ALL who responded to my post. I am sure I will read your posts many time. This really is the only place to let our real feelings out.


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May 10, 2019 05:52PM HikingLady wrote:

TammyKh I understand the need to keep your privacy. I get your decision to not necessarily share the real, whole truth with everyone; of course you're being generous and kind, and trying to spare them added pain. But, watch out for the toll it's taking on you to keep that fake happy face on.

I had a very loud, but Silent Inner Scream. I never really, actually ran out in the garage to scream at the top of my lungs (I'm a classical music singer, and yelling is not good for the voice, so this became a metaphor, not reality), but the idea of it helped me through the challenges. I was screaming and furious inside lots of times when my face didn't show everything I really felt.

I went to see my breast surgeon (the one who'd had breast cancer + chemo + BMX at age 32 and was treating me when she was 36 or so) after my BMX for my follow-up appointment, and she asked the usual, "How are you doing?" I gave her a totally and obviously fake smile and said "Just FINE" with a little irony in my tone, and she immediately replied, "Yup, that's the Party Line." Honestly, having her as model of someone who somehow got out the other end of the dark tunnel with functionality and sanity, was extremely helpful! Anyway, then we discussed how I really was doing after that, but her point was, we all have this fake persona that we use as a mask. Fake it till you make it, of course. Ha ha, probably so we don't freak everyone else out. Geez, what if we actually told how we REALLY felt every time anyone asked? Lol. So, thank heavens my screams were not actual ones; they probably would have broken glass and left a radius of cardiac arrests in their wake.

I'm glad you have small but close inner circle who know the truth about your challenges. Sharing our vulnerability can help build intimacy. It's a gift to others to let them in on our vulnerability, and it's also a gift to let them help you out, whether with hugs or casseroles or a walk or a cup of tea or a margarita. There's a limit to how much to NEED others, which is why we don't want totally needy people around all the time, lol! However, the people who love you probably are the right place to vent and tell the truth. Also this forum. Maybe also a therapist. Glad you found this space. And, I do hope you'll ask your PCP about anti depressants. You've been through a huge trauma.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 11, 2019 04:30PM Salamandra wrote:

Mavericksmom,

I'm glad you emailed your doctor. He didn't deserve that much of your time and attention, but he deserves to know how he impacted the life of someone he did not take the time to understand. If he is part of a larger medical center or practice, consider emailing them also.

I hope 3-4 years goes by more smoothly and quickly than you think, and then you get a peaceful and stable retirement. With that second breast removed if you still want it off. I'm sorry and angry that you had an arrogant doctor and that we don't have better protection and health care for workers here.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 11, 2019 05:21PM edwards750 wrote:

Mavericksmom - well that totally sucks getting the beast again after so long. It’s obvious we are all never going to be totally rid of it. I tried to tell my MO that I will always be looking over my shoulder because I am branded with the C word like the rest of you.

I feel for you. The despair and pain of dealing with it again along with everything else like a job you hate would bring me down too. I wonder just how much any of us can really take. Depression goes hand in hand with BC - how could it not? I too put on my game face around my family and a few friends. I saved the weeping and moaning for my support group at church.

Social media is so fixated on “fighting” the cancer which by the way bugs me no end. As if any of us give up when we get DX.

Idk what the answer is for you. I wish I did. You don’t deserve to be dealing with this a second time. I had a job that I resigned from when I was DX. Travel time was taxing, night work, job location on not so great part of town and the pressure was enormous. It did pay very well but you earned it. The only reason I could quit was because my DH and I ran the numbers and the $ didn’t benefit us as much as we thought.

I hope you can get through this with support. You definitely have ours.

Diane


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May 13, 2019 04:06PM TammyKh wrote:

Mavericksmom - I wish I can give you hugs. I totally understand what you have gone through about you were rejected to do BMX. "We don't remove a healthy breast!" - it's what exactly my oncologist told me when I told them I wanted BMX. I can't remember how many times he keeps reminding me "We don't remove a healthy breast, or removing a healthy breast can't improve your survival rate, bla bla" I understand that I'm living in Canada where its people get free health care but it's supposed to have the reasonable reasons for surgeons to do unnecessary surgeries. They are just doctors, they just know how to treat/kill cancer but they don't know us, don't know our lives, don't know what we are going through as a cancer patient. I know it's very hard for them cause they are not their breasts. I'm grateful for what they are doing to save my life but honestly, I wish they could stand on my side to understand my feelings, my emotions... They said they would remove another breast if I get the second cancer/recurrence and what I am doing is that just wait until I get cancer again. My cancer is estrogen positive and my healthy breast is remaining, so the chance to get the recurrence is still high for me.

Dx 10/24/2018, IDC, Left, 4cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 1/11/2019 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 4/1/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 13, 2019 04:19PM TammyKh wrote:

HikingLady - Thank you for your supports. I told my breast surgeon that I wanted to talk to PCP as I have gone through depression since I was diagnosed with cancer. She said that it's reasonable for me to have an appointment with PCP because I got cancer but I haven't still seen anyone yet. Maybe she forgot or she thinks that my depression is not so serious that a referral to talk to PCP is needed. I wish your breast surgeon could be mine as she is able to stand on my side, understand what I have gone through now based on her own cancer experience, I think. Your breast surgeon would be a inspiration for me to get out of the dark tunnel.

Dx 10/24/2018, IDC, Left, 4cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 1/11/2019 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 4/1/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 13, 2019 05:41PM HikingLady wrote:

Mavericksmom and TammyKh

RE: taking off a healthy breast...yes, this one is a very interesting dilemma for surgeons and oncologists. In fact, if you've had one breast cancer you do have an elevated risk of developing another breast cancer, for sure. Not HUGELY higher, but higher. I can't remember the numbers. I think that they told me that everyone has a 15% chance lifetime of breast cancer, and after my first one in 2003, I had maybe more like a 20-30% chance, so it was not 100, but it was higher than the average person. And, in giving me a lumpectomy + radiation on just that one breast, the cancer was cured, and I kept my breast.

15 years later, I got another breast cancer. Completely new one. The first one was definitely cured. I remember thinking after 2018 April diagnosis "OH MY GOODNESS IF I'D KNOWN THIS WOULD HAPPEN I WOULD HAVE HAD A MASTECTOMY ON THAT BREAST!" But, we can't know. No crystal balls, just statistical probabilities. And, in fact, I had my breast for another 15 years, and although I had no nipple sensation after that lumpectomy + radiation, I did still have the other breast that did have nipple (erotic) sensation. That's absolutely gone forever after BMX, and most of the time, they're non nipple-sparing. Even when they're nipple-sparing, sensation is usually gone because of all of the severed nerves.

SO, when I got the 2018 diagnosis, I mentioned my terror about future cancers as a serious mental health consideration, and I tipped the scales for them---they (doctors) agreed----I should get to have my BMX which I requested completely for peace of mind. I had to have a UMX no matter what, because new cancer's location was not great for a lumpectomy. Also, it's not possible to do radiation twice on same breast, so it really had to be a mastectomy (new cancer was on same side). After my BMX, I do not have ZERO chance of breast cancer. Maybe .05% or something....it's possible for a cancer cell to have escaped into chest wall or rib cage or armpit. Very unlikely, but I'm instructed to check my skin, since there's nothing to see on a mammogram.

I want to share another interesting piece of this story. My first surgery was in 2003, and my Breast Surgeon #1 from that cancer got her own breast cancer a few years later. She decided to have a BMX (2nd side prophylactic)--she was in her late 40's or early 50's. My 2nd cancer was in 2018. My 2018 BS #2 (who practices in the same group with my 2003 #1 BS) ALSO is a breast cancer survivor---had her BMX (2nd side was prophylactic, cancer in just one breast, as is usually the case) for peace of mind. When I discussed with her (2018 #2 BS) the idea of having a BMX, she told me a few facts. Especially noteworthy was the idea that I was doubling all of my surgery risks by having twice as much surgery, and of course, I was submitting to surgery on a healthy body part. And, I needed to understand that we weren't reducing breast cancer risk down to zero, as I mentioned in the above paragraph. Then, she pointed out that she (#2) and that other (#1) surgeon had both chosen to have BMX, 2nd side prophylactic, definitely for peace of mind. So, "it's a thing people choose," and I wasn't told that I couldn't choose it, I was just carefully informed of all risks and benefits. When discussing all this with my PS in advance of surgeries and to plan reconstruction, he explained that my chances of having a matched set of foobs was higher after a BMX, because it's more difficult to match one mastectomy reconstruction with another real breast than to have two reconstructed breasts match. I think he was just stating the facts, not trying to persuade.

Although this next issue is kind of irrelevant to most people on this post, I had previously irradiated tissue on my right side. My right side didn't like healing after the mastectomy. The blood supply is compromised because of scar tissue (invisible) caused by that 2003 radiation. Then, the tissue expanders were more uncomfortable on that side, because right side's pecs (also full of scar tissue) didn't want to stretch. Eventually, I stopped getting saline and settled on Fairly Small Foobs that Kind of Match. Right side is tighter and didn't end up being quite as big as left side.

All we can ever do is make the best decision at the time with the information we have.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 22, 2019 02:06PM emac877 wrote:

I kind of stumbled on this post and had to really think about the question. I was 40 when I was diagnosed and looking back 18 months later I am nowhere near who I used to be. Professionally I had just moved into ICU from a critical care stepdown unit and was really looking forward to learning more. I loved precepting new grad nurses and was planning to get my advanced certificate (CCRN) and had written in my yearly evaluation that my goal was to be able to take on any patient that rolled through those doors. I had been a charge nurse in the stepdown unit and had hoped to work my way into being charge for ICU as well. My diagnoses shut all that down in a matter of months. It's been 18 months since diagnoses and only a year since chemo (TC x 4) and 11 months since radiation.

I just chose to leave ICU. The daily fatigue I feel makes it impossible for me to physically keep up with a 12 hour shift with critically ill patients. I get so exhausted I can barely think and it's not safe for me or my patients so I'm choosing to move back to the stepdown unit which has more stable patients and protocols and processes I'm more familiar with. I would leave the hospital all together but I need my insurance and can't afford the pay cut that would go with taking a clinic job or surgi-center job. On my off days I have to take a nap in the afternoon and I have become a "list" person otherwise I find myself feeling disorganized and forgetful. I was always an emotional person but the fatigue has made it hard for me to remain stoic. It feels like I cry a lot when I'm frustrated or pushed beyond my exhaustion threshold. Oddly enough, I have a great sense of humor and I don't feel sad very often. Mostly I'm angry. I want the old me back. I feel like I've lost my mental sharpness, my intelligence and my sense of self and working towards getting those back is an ongoing, exhausting fight.

I wish I had some glowing silver lining in all of this but I don't. Most of the time I'm still shouldering through. I've gotten better at rolling with changes but I don't like it. I have to tell myself daily it's okay to make mistakes and be forgetful and remind myself that I am smart, but I am tired and that's okay. Most of the time that conversation accompanies a lot of tears. I'm more of a recluse on my days off. I can be very extroverted at work and I do well socially but most of it feels fake. If people could see inside they would see a lot of embarrassment and insecurity as I sometimes struggle to find the right word or remember a task. When I can't keep up at work and find myself drowning in an assignment I'm embarrassed that I can't keep up and I see the concern on my coworkers faces and I hate it, it's embarrassing. In critical care we are typically the Type A high performer type personality and there is some judgement there when you can't keep up. I feel the concern but I feel the judgement too, even if it is just in my own mind. It feels like a failure to walk out of ICU back in to the stepdown unit but I know it's the right thing to do right now. I don't know if I'm coming back or not.

I have been menopausal since chemo in 2018 but started bleeding randomly and am scheduled for a hysteroscopy, biopsy and a D&C. I guess I should feel concerned about that but honestly, after all of it I think I've learned not to freak out until I have facts to freak out about. I am constantly trying to research the expected trajectory of recovery. Is it normal to feel this tired? Am I really not feeling well or am I not trying hard enough? What is "recovered" going to feel like? Or is there such a thing as fully "recovered"? These are the questions I seem to always be asking myself.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/22/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Chemotherapy 6/8/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Chest wall
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Oct 4, 2019 12:17PM TammyKh wrote:

Hi everyone,

I'm back! Sorry for a long absence.

What I can say now is that I am getting better better better. No depression, no anxiety or bad feelings. I'm happy to live with my new girls that are very nice. Other than that, I have been on Tamoxifen for more than 6 months and no serious side effects, just a few minor ones such as randomly hot flashes, vaginal dryness a little, weigh gain.

I am doing very well right now. Eventually, I can get back to yoga and doing yoga 5 days per week. Also, I can do running and could finish a run 5K. I am very healthy, everyone!

I think that time is the best treatment for my negative feelings and emotions caused by my cancer diagnosis. I hope everyone will get well soon like me. If possible, please don't look back, just look forward for your life, your health and your beloved ones.

All the bests to all of you.

Dx 10/24/2018, IDC, Left, 4cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 1/11/2019 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 4/1/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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