Anyone NOT recommend reconstruction?
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I still have fluid, however, can't complain. I am fortunate to know that road is now behind me, yet one I have a constant reminder of (double Mastectomy). Thank you!
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You are resilient! My goodness, what you have endured and are so strong. I admire that you haven't stop fighting but don't let the dark days outnumber the sunny ones. Radiation was very hard for me and though my name is not Robin, I said to the radiation tech that I should have been and she asked why and it was because my chest was so red from the burning of the radiation that I said, "ever hear of Robin Red Breast?" As for the Anastrizole they wanted me to take for 5 years, I declined to take it. That made my medical oncologist really mad at me. He yelled at me, "Do what the hell you want," and he left, slamming the exam room door. I had my reasons...I had been diagnosed with a macular hole in one eye and was due to have surgery to try to repair it and that drug had some side effect that affects eye health. Got to make lots of choices with cancer treatment and it is not easy. You have to know the options and pick the best one, in your heart, that feels right. Sending light and love your way.
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I just recently found this discussion and decided I had to create an account and join in. Thank you, Judemo, for starting this thread. I know I need to engage with others who understand what I'm dealing with.
I was diagnosed with hormone receptor positive breast cancer in August 2009. I had a mastectomy followed by four rounds of chemo and 30+ rounds of radiation and several years of pills. In addition to the mastectomy, the size of the unaffected breast was reduced and implants were put in both sides. Fast forward to February 2020 when I fell and ruptured the implant on the mastectomy side. This past November 3rd I had both implants removed and my left breast removed as well. Pre-cancerous cells were found during biopsy of that breast so any questions I had about that decision were put to rest. I wanted nothing more to do with implants so my only other option was to accept that I would spend the rest of my days as a woman without breasts.
I'm struggling with my new appearance. I had hoped for flat and am disappointed with my now concaved chest. Since I seriously don't want to wear bras or prosthetics anymore, I'm going to have to figure out how to dress this up and present it to the world in a way I'm comfortable with. I'm 68, retired, and isolating from covid so my world is pretty small right now. Being that it's winter, wearing multiple layers helps me not feel too exposed, but summer will be a different story. For now, I just keep doing the recommended physical therapy exercises and I'm working with a therapist who is helping me with scar healing and maintenance.
Thank you all for your time and energy. It's good to know you are there and that you care.
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Hi ML, I had prior breast cancer 20 years ago, and elected not to get reconstruction. I wasn’t told back then that a mastectomy is not a guarantee of avoiding a local reoccurance, because they can’t be 100% certain that they got ALL the breast tissue. Over these 20 years the big focus has been on my healthy breast on the other side. Wouldn’t you know it, but I had a local reoccurrence on the mastectomy side 20 years later! Likely I”m told a cancer stem cell was left behind. I found it myself, because there was nothing blocking access to feeling my chest wall. If I’d gotten reconstruction, who knows? Likely I’d have missed it. Besides, after adjusting to the missing boob for a while, I had no regrets. Hey, I could decide if I wanted to be bigger or smaller via breast forms! At that time I was single and not one man I was with over the 10 years prior to getting married was turned off by that missing boob. What I heard mostly was “initially it gave me pause (because I didn’t know how to touch you without hurting you), but it in no way diminished my sexiness or attractiveness in their eyes. Two really nice things I hear which I think applies to every woman: “It makes it easier to know I don’t have to give your boobs equal attention or you’ll feel dissatisfied” Another said: “There’s nothing between your heart and me, I like feeling your heartbeat so intimately.”
I had decided to wait a couple of years before I went for reconstruction to grieve first. I also didn’t want to lose strength by their having to use the lat muscle to make the new boob. I’m glad I did, and especially so now.
Finally, I was a massage therapist for 15 years, I I worked on several women who had reconstruction, and I never saw a remotely normal looking boob, especially if someone had gained or lost any weight or aged. Plus, they couldn’t feel a thing, it was completely numb. Ugh. I at least could feel someone touching my chest; not perfectly but still there was feeling.
Yes I’m biased, even before my recent local reoccurance! Hope this helps give you food for thought.
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HealthyCee,
What a lovely message. Thanks for sharing your experience and thoughts - it really helped me. I have been wondering about the future and not knowing what my sex life will be like. I had a radical hysterectomy 7 years ago, and now a double mastectomy....what does this mean for my future sex life? My current sex life is nonexistent. Zero. Nothing. It had already been years of no sex prior to mastectomy and now it seems like it might remain that way: non existent. I actually have no desire and I'm not sure if it's because of lack of hormones, age and/or radical surgeries due to cancer. My marriage is more of a friendship/partnership w/out intimacy. It's quite sad actually: I used to care and be depressed about it - now, I just don't care.
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I get that, I can relate. My marriage had become more of a friendship/partnership too. Turns out with us that we’d lost a lot of emotional closeness and had both gotten discouraged and emotionally self-sufficient under the surface. Yes my sex drive went way down with menopause, but sex had really left the building anyway because of the lack of emotional intimacy and connection. That sense of not caring you describe is a bad sign. Couple’s therapy, particularly emotion-focused couple’s therapy, has been really helpful for us to get past that place. Intercourse is physically painful for me and I’m going through treatment and had to stop the vaginal estrogen that had helped, so I don’t expect my interest in or ability to have intercourse is going to increase in the near future. The difference is that now we’ve got more emotional closeness and trust, and more sensuality going on, which really does help sustain us.
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Hi Judemo, it was really nice reading your reply. My name is Gayle, and I really didn't think about a cancer recurrence as I was getting sick. I had had hip pain for a couple years precipitated by sitting cock-eyed on a bar stool at an afternoon rock concert hosted by my niece, so I just kept blaming it on old age and arthritis. Actually, I was driven to the Dr. by breathing problems that were not helped with asthma meds and a nebulizer. Covid changed so much, and my clinic was not doing face-to-face so my medical care was through the advice nurse and on-call physicians. When I tested negative for Covid a few times I was put on the backburner until I insisted on an appointment and a chest Xray. The shortest version is that a cancer recurrence was diagnosed- my right lung did not show on the imaging, and it turned out my pleural cavity was full of fluid and my lung was collapsed. Later it was determined there were cancer cells in the fluid. The cancer in the neck of my femur was determined to be cancerous from a PET scan. I technically do not have lung cancer or bone cancer, I guess, it is breast cancer metastasized to lymph nodes in my chest and the others I already mentioned. I am really okay- tired, very little pain, and extremely grateful for every day I have vertical. This site is really helpful in processing cancer and hearing from otherrs who understand. God Bless.
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Gayle,
All I could think of after reading your reply was, "Wow! How shocking and devastating to get that news!" Then, you were not feeling well and having difficulty breathing to top it off. Did they have to do a thoracentesis to get the fluid off your Lung? I'm glad to hear you have very little pain. It's surreal when you think that no one, not even doctors can give us reassurances that our cancers won't recur, but when they do, it is devastating. I pick up a sense of "peacefulness" in you after reading your reply? I'm sure there are days that are more difficult than others. I am here anytime you want to chat about your experience.
I think the improvements they have made on this site is helpful to me. I like getting alerted to replies to threads.
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Hi, thanks for your kindness. I have never really felt devastated; actually, I don't think I feel much of any reaction at all. At first I thought it was shock or denial but it doesn't feel like that. I am at peace and that does not mean I am in a hurry or waiting to die. I love my family and have lovely friends and a really good life- I just feel at peace and I am happy. Maybe I am nuts but maybe I am just relieved I got all those healthier years to raise my kids and help raise my grandchildren. They are now happy, lovely people and I am grateful that I am loved. I agree with you that the diagnosis can be devastating but so much of that depends on so many other things- age, personality, responsibilities, pain, resources, emotional baggage, fear, pain tolerance... I guess I kind of feel done with what I wanted to do with my life and now I am satisfied with reaping the rewards and just relax finally. I do have to say that dealing with a marriage and sexuality sounds like a double-edged sword. Perhaps more physical and emotional support but also dealing with hormonal changes and vulnerability that I don't have to deal with. I do struggle with my self-image- weight gain, hair loss, scars, no breasts, etc. I am used to being in public with no prosthetics- it's funny but a neighbor of mine said he thought I was just flat chested......long story. Strangely, it helped. I still hate my hair, very thin and bald on top. I feel like Emmet Kelly's grandmother. (A work in progress) So far wigs make me feel like Carol Burnett's grandmother. Anyway, how are you feeling? Do you trust your treatment team? How are you tolerating your medication and the radiation? I will dsend tons of good wishes your way!!! Gayle
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HealthyCee, I was intrigued by your post. It was truly good food for thought. What lovely men you have known in your life- I am not sure if that will sound the way I mean it. What lovely comments you shared. I will bet your occupation has been helpful in your emotional and psychological adjustment and I hope you are getting lots of massages in your recovery. I was happy to read that you noticed something wrong earlier than you might of in other circumstances. I elected to have both breasts removed in 2013 to slightly decrease the risk of recurrence and my cancer returned in my chest cavity, right hip, and right pleural sac this last year. My original cancer and lumpectomy in '91 and my stage 3 in 2013 were in my right breast. Best wishes to you, Gayle
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Thank you for sharing your journey; I can relate to your concerns. When I was getting used to having no breasts, after having rather large breast most of my life, I found that pretty camisoles under nice shirts and really pretty scarves helped with the transition. As I wore scarves wrapped around my head during chemo (trying to channel Lana Turner) I just started wearing them draped around my neck and across my chest. I don't think people notice it as much as we think they do. I have a neighbor who was surprised when I got sick this time, it was hard to hide because an ambulance showed up, when I explained he said he thought I was just flat chested. In ordinary circumstances I would have been very uncomfortable, but it was really funny to me and put much of my anxiety in its proper perspective. Best wishes for your recovery and I'm glad you found this site. Gayle
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It has helped me so much already to read words written by others that I can relate to on such a deep level. I'm reminded of something I heard once that goes something like this, "We would not worry so much about what others think of us if we knew how seldom they did." I'm sure it's true that I'm bothered more by my "new look" than anyone else. And, frankly, after reading what so many of you are going through right now, I've got nothing to complain about. I'm going to crawl back up on that grateful train and stop sniveling. I'm not a religious person but I do pray and you will all be in my prayers. Strength, Peace, and Love from my heart to yours.
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I am incredibly lucky to have such a supportive husband and 4 children who love me and will do anything for me. I have been thru a lot since 2008 with 3 other cancers , surgeries 3 different times for prolapsed bladder for bladder sling because of mesh failures. I will be 79 in May and am mostly healthy and feel good. I just hope this radiation and pills coming up don't do more damage than good. This is a comforting and informative site to visit, glad I found it.
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I have found that wearing tops that have busy patterns on them help. I am glad you found this discussion board as well! I also have done web searches on "Living flat" or living after mastectomy and have found some helpful info. Many of my tops are a little baggier now from having large breasts previously, but I still wear them. You sure did go through some horrible events - sorry about everything you've had to endure. We will get through this together, however virtually. Keep coming back here. 😊
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Gayle, you know, I thought about it and realized I did not feel devastated at all either after I heard the DX. I just didn't really process it and ended up just going through it like it was all just part of life....which it is. Getting cancer is part of life. I know there are others who are suffering way more than me, so I don't complain. I feel pretty blah about everything anyway. You have a lovely way of writing and have managed to make me laugh at some of your comparisons! 😂. I don't have a treatment team anymore because I decided not to take Tamoxifen. I was lucky that I did not have to have radiation or chemo. I surprise myself when I think about how quickly I put my trust into my DRs and complied with everything they told me. I never got a second opinion. I just went with it (double mastectomy). I might regret not staying on Tamoxifen, but I'm 58, no children and not much going on in my life except taking care of my parents and working. Thank you for sharing your experiences with us. It's interesting how much people really don't notice or care about how we look. I care less and less about what others think about me. I'm sure I would think about things differently if I was younger and not in a sexless marriage. I'm not complaining, just saying it the way it is. Who knows how we would respond to our cancer DXs if we were at different ages or phases in our lives. Thank you for your good wishes!!!
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