4 weeks post-exchange surgery and struggling
Hi Everyone,
My exchange surgery was done on August 8, 2016. I had bilateral Mentor MemoryShape 475cc implants. The tissue expander experience went as everyone on this board describes, iron bra, medieval torture and so on. However, most folks on these boards seem to feel tremendous relief after exchange surgery. It is the golden ring we aspire to. It wasn't until the day before exchange surgery that my first very blue thoughts occurred. In some part of my brain while being in survival mode after diagnosis and BMX, I looked at the exchange as the time I would get "my" body back. What I, of course, was actually getting were two silicone blobs that I would carry with me for the rest of my life.
Please don't see me as ungrateful because I do believe BMX saved my life as we have what is believed to be hereditary cancer, though none of my family has a known mutation. I managed to stay in pretty good spirits throughout the tissue expansion but after the exchange surgery, my spirits have plummeted as the impact of what cancer has taken from me sinks in. I have a great PS who has been kind and compassionate and the visual result of my implants is good. I had nipple-sparing BMX, so I am able to look in the mirror and say "They look okay. They aren't perfect but they are fine." In clothes, I feel comfortable.
Here are the questions I want to ask. Will I ever feel that these hard lumps in my chest are a part of my body? Will I ever get in the shower and be comfortable touching them? Will I ever not try to keep my arm from rubbing against my body because I can feel the implants when I do that? Will the tightness under and around my breasts ever go away? Will I ever roll to my side and not be conscious of rolling onto an implant? Will I ever feel normal and how long does this process take? When will I start to feel good again? I still have low energy and lack of endurance. On these boards, it seems like most post-exchange women are back to their normal lives in a week with no issues at all.
I've tried everything in my magic box to pull out of this slump but I am having a hard time. I had invasive ductal carcinoma, stage 1, grade 2, clean lymph nodes and no chemo or radiation. I'm going to start looking for a support group but it would be nice to have a BMX/reconstruction group for women who have not had chemo or radiation, as I feel that somehow the fact that you dodged the bullet of chemo and radiation puts you in this group of "Oh, you are so lucky. Even though you went through BMX/reconstruction, you are good to go, so be on your merry way!" It's almost as if your experience is negated, so you have no right to grieve the loss of your breasts and the fact that cancer has forever changed your life.
Sorry to go on but I really have no one else to share with. You have to have gone through this to even begin to understand it.
Comments
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Jonella,
You are still very early in the process post-exchange. The feelings of despair and "is this it?" are common. I am sorry you feel this way.
For me, I found things began feeling and looking like me around 3 weeks. That was the beginning. I'm 15 weeks into it now and things are so much better: Implants are softer, I don't feel the need to analyze myself in the mirror all the time, and best of all, I sometimes get a glimpse of myself and really like the way they look. I assume that means I have embraced the "new normal".
I would suggest that you feel the implants. I always liked the slightly squishy feel at the top of the implants and now noting the difference in the feel in a few weeks is amazing! Things will get better! It is also A-OK to grieve what we've lost! I had DCIS and did only a NSBMX so people too thought I should jump back into life as if I'd had only a pimple popped or some other minor procedure. A therapist for a few sessions might help as well.
Hope some of this helps!
Carla
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Thank you, Carla.
Yes, it does help. And they are feelings of despair because you feel isolated from your normal support group, friends and family. My PS suggested touching them often as biofeedback for the brain. I have been doing that, though it feels so forced. I am with MD Anderson in Jacksonville and they do have a breast cancer psychologist that I have seen. Still, I believe what I really need is to be among people who have gone through this. I found a FB group called Sisters in Scars. Also, I am going to look for a local group.
I hope you can start preparing for that Iron Man competition or skydiving in the next week for two! LOL. Keep me posted on your journey.
Thank you,
Joanne
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it does take time to get used to the new foobs. I remember thinking a few months ago, "wow they feel comfortable". They do continue to get softer and you can start to sleep on your sides without thinking somethings going to shift.
As for the moving on from cancer thing takes awhile. As you see I'm still here lurking. I think it is difficult to move on when treatment is over for many, but it does get easier as time goes by
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Lvbugs,
You are right! It is hard to move on. When I first was diagnosed I told myself I'd do what was needed and then go back to life. Hahahahaha! Now I find I still do a lot of research on how to make myself healthier and to keep this from happening again for as long as possible. I feel like I "missed the memo" on the first round and I'll be damned if I'm going to miss the second memo!
I also read that women who do BMX for relatively "small" lesions tend to have more anxiety afterward than those who opt for lumpectomy and rads. I poo-poo'd that thought when I read it but now I think that may be true. There is a lot of residual anxiety at times.
It's definitely a process!
C
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I am also one of those people who just had a mastectomy and reconstruction. I will be getting genetic testing soon. My mother my aunt and one of my female cousins have all had breast cancer. So even though there is no known gene at this time I also think there is something genetic.I think there are other people out there that feel like you do. Because the whole process of getting the diagnosis, going through the mastectomy etc. It's hard to get through it unscathed. I have also been having some issues and also may seek counseling. About 2 days before my last surgery I found out my best friend had a very serious form of cancer. Besides the fact that I feel grief for her I find it tough to be happy for myself.
Anyway, I think you are doing the right thing my speaking up about your feelings and seeking help. I also think that the new chest will eventually become your new normal.
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This has helped me so much, and I did not know that women who had mastectomy for small lesions experience more anxiety, but it makes sense.You are more likely to go back and ask yourself if you did the right thing, maybe you should have done lumpectomy/radiation. Your breasts would be relatively preserved. But you know your best chance for long-term survival with strong family history and dense breasts is BMX. My sister had primary breast cancer at 33 and primary ovarian at 43, brother died of pancreatic at 55. It goes on and on.
And though you may have a great support system, people grow weary of your cancer (that is now cured LOL) and want you to move past it. Last week I actually had a friend ask me if I was taking too many pain meds. A, I haven't taken pain meds since two days post exchange; and B, I can't take NSAIDS because of two ulcers. At that time I was three weeks post exchange. I should have told her to walk in my shoes for a while. She'd be taking the pain meds by the handful.
I have to say that expressing myself and hearing your replies has cheered me up. I think there is a lack of information on exactly what immediate reconstruction means. I do think people believe you walk out of the hospital with brand-new, perky breasts in whatever size and shape your heart desires. So I've tried to be as honest as I can with FB posts and in discussion with friends and family. I think of what what I can do when I get myself back together to increase awareness of how difficult BMX with immediate reconstruction really is.
Have a good day, friends.
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Also, because of family history, I had been super conscious of what I ate and the amount of exercise I got, etc. I expressed anger over this fact to my nurse navigator, and she told me that they aren't able to quantify the value of prevention but I have to trust that it helped, that I might have had a more virulent cancer 10 years earlier without the prevention. I don't know that this is true but it did mentally help me.
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I was pretty frank with my friends. I showed them the swollen, dark, bruised mess that was left after the BMX. They also got peeks of and photos of the subsequent changes. They KNOW I didn't wake up with perky new boobs. Still, most of them got weary, so I don't really share any more.
At the same time I started my stuff, I had a friend who was diagnosed with thyroid cancer. She cheerfully repeated what she'd been told that "thyroid cancer is the GOOD cancer" to get. I immediately told her that there is no "good" cancer and she is free to process the whole thing as SHE feels she needs. As it turns out, she's had complications, 2 surgeries and has 2 different cancers in the gland. She is now telling those same friends that indeed there is NO GOOD CANCER! We've proven to be a good source of support for each other and neither of us tire of hearing about each other. Priceless!
Being heard and validated means the world! Glad you are feeling better Jonella.
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I think my anxiety comes from the fact that I have no more (other than teeny bits here and there) breast tissue into which a recurrence could happen. If it comes back, it will be bad...no buffer zone.
My BS said something similar when I bemoaned the fact that I breastfed my daughter for 39 months, lived a healthy lifestyle, etc. All I can do now is keep trying.
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I'm new here, and glad I found this thread. I'm in the same boat - BMX on 12/27/16 with reconstruction (nipple sparing) and no chemo or radiation needed. Has anyone started a separate forum for our situation? You're right, it's almost as if once you're back to work, back to doing normal things, everyone thinks you're fine and it's all behind you. I mean you "look" normal and back to work, so it must be fine, right? HA! I'm in the tissue expander phase (and not loving it) and SO looking forward to the exchange in April. And yes, I AM grateful to not need chemo or radiation, but we are all still dealing with a lot!
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I am also now 7 weeks post exchange and feel the same way you do. Everyone said I'd feel great, but I don't. I just wanted to say that you are all not alone, and i agree that those of us who were "lucky" enough to have surgery and not chemo or radiation are sort of in a tough spot. I think that if i was still fighting for my life I'd care less about what my foobs looked and felt like, but since that is all I am dealing with it's hard to put behind me. I will say that I started working out about 3 weeks ago and while it's hard getting back into shape feeling strong is helping.
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I am three weeks post exchange surgery, and it has been really difficult. I am so blessed that I had a small invasive ductal and that I did not need chemo or radiation, but I have so much doubt.
They were unable to locate a sentinel node, (I had a previous reduction on that side so they think that is why.) I always have this nagging thought that there could be cancer there.
I also developed a DVT from my neck to my arm and have to take bloodthinners. The DVT also prevents me from taking tamoxifen because it can increase your risk of blood clots. There is just so much uncertainty.
On top of that, my foobs are much smaller than I had anticipated. In a tank top I look small but cute, but in a real shirt, I look like I have nothing. Then I feel guilty complaining about it.
I am happy that my cancer wasn't worse. I am happy that my blood clot did not travel to my lungs. I am happy that I have a great husband, but this lingering depression is opressive.I just want to feel like my old self again.
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I am new to this forum and just want to say I agree with the statement about having a bmx for a small lesion has caused me a lot of anxiety. I am constantly wondering if recovery would have been easier with a lumpectomy and radiation. I have had complications with my body rejecting one expander so I recently went through the exchange just on one side and will be waiting 2 months to do the other side. I often remind myself why I made the decision I did and want to share with those who might be struggling. Again these reason were a personal choice and does not fit everyone’s situation. #1- Strong family history #2- Anxiety over future mammograms #3- Radiation affects to my heart and lungs (husband is a pulmonologist) #4- If I had a recurrence after a lumpectomy in the same breast I would have had to have a mastectomy because they don’t do radiation twice on the same breast. I was currently a candidate for a skin and nipple sparing mastectomy that may have changed in the future The pathology on my good breast came back as atypical precancerous cells. So I tell myself everyday that I made the best decision for my future while I struggle with the present.
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I made the same decision for all the same reasons. I didn't have medical complications like yours, but I did have my first implants replaced after a year due to some asymmetry, capsular contracture and general dissatisfaction.
Try to keep your eyes on the prize. You still have the benefit of the BMX! It's just taking you a bit of time to get the final result. When it happens I hope you're thrilled!
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I am 7 weeks post exchange surgery, and feel the same. I had complications with healing and an extrusion (the implant came through my skin) about a week ago and had the right implant taken out in emergency surgery. I feel like everyone thinks I should be over it by now, mentally and physically. Post removal surgery feels like starting over. I have a drain and a pretty rough looking stitched up area where I once had skin. Plastic surgeon told my husband after removing the implant, he has all kinds of tools in the tool box to fix this. I do find it is true that people think if you didn't have chemo and rads, That it is a walk in the park. I take tamoxifen and I know that affects my mental health. I hope by you sharing on here, it will help you understand that none of this is easy and its ok to feel whatever you're feeling. You are not alone. !
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Jonella, Sorry you had such a rough time. I also had prophylactic surgery after three lumpectomies for the same small lump that would not give clean margins. After the third surgery I didn't have much of a boob left, so opted for BMX. Did not need chemo and opted for no radiation, which I'm thankful for now. I never felt judged, only thankful that it wasn't worse. However, I know what you mean about feeling different than those who have gone through all that.
I'm four weeks out and feeling great. Even a week makes a big difference at this stage. I can sleep on my side now, but still feel the implants. I don't know if that will ever go away, but it doesn't keep me awake. Otherwise, I'm starting to get used to the feeling and not noticing them as much. Everyone is different and needs to heal at their own pace. If you still have no energy you may need more rest. Hang in there, better days ahead.
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I had possibly the same diagnosis that you had. I opted for the double mastectomy. I also didn't need chemo or radiation. The loss of the feeling in my breasts is something that I've never gotten used to. They couldn't save the nipples, so I look quite odd. But with that said, I'm happy to be here and my desire to live fully outweighs my feelings of loss. I had the reconstruction using my lats in 2007. The implants feel fine, but balancing everything, I'd rather have the implants and be here, then still have my normal breasts. I think talking with someone can be helpful. This site is helpful, but some people want to share too much information that may be scary. Losing breasts is tough and not to be taken lightly. Don't be too hard on yourself. Even though so many women have had breast cancer, it is still traumatic.
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