Deciding against reconstruction surgery, I think?

[Jenny in Florida]

Not sure why I'm posting, really, except that you all are good at helping me think out loud.

I finished my six weeks of radiation therapy, which wasn't fun but not as awful as it might have been. I have some discoloration and tenderness under my arm and on my shoulder and neck on the treated side, which definitely isn't comfortable, but I have looked at photos of radiation burns online and see I got off pretty easy. I had been more or less assuming that, once I got past radiation, I would move into preparing for reconstruction. I knew from the beginning that I was not going to be interested in implants, so I found a surgeon (the only one in the area, apparently,) who does the DIEP flap procedure. I went for a consult with him before I had the mastectomy, and he said I am a good candidate for DIEP. He took reference photos, and we agreed I would think about it and reach out to him after the mastectomy and radiation/chemo when I was ready. (It turns out I didn't need chemo.)

A little over a week ago, I went ahead and emailed him saying I was ready to discuss next steps. He explained that he typically waits six months following radiation to do the procedure, but that we should go ahead and get CT scans and schedule a surgery date, since things do book up. 

And then, I just kind of . . . paused. 

I'll be honest -- I hate how my chest looks. I am self-conscious whenever I go out without the fake boobs, and I try to avoid looking at myself in the mirror when I am getting in or out of the shower. 

I also hate wearing the fakes, because they feel weird and sometimes are physically uncomfortable. I often feel like I am wearing a costume. I hate how, when I go to brush crumbs off my chest, I encounter a foreign body there. And wearing them makes me feel only marginally less self-conscious. 

So, I really thought that reconstruction was my best option.

But then I started thinking about the realities of this: One of the things that has been most devastating to me about the whole breast cancer experience is the way it has messed up my ability to be in my life, both work and family. And now that radiation is over, I have this opportunity to try and get back on track. I will never "make up" the ground I have lost, but I could pick up and start moving forward. 

If I decide to pursue the reconstruction, though, it means six months of limbo, having to put off things or not accept assignments that I can't finish before the surgery. It means being willing to put everything on hold (again) for at least six weeks to have and recover from surgery that is more invasive and complicated than what I've already done. It means taking on health risks that are not medically necessary (which goes against my nature in a big way). 

And, when all is said and done, I have no confidence I will feel any "better." I would still not have the body I had pre-cancer. I would still have a chest full of scars. (Yes, I've seen photos.)

I was struggling yesterday to articulate to my husband -- who is nothing but supportive of whatever I choose, by the way -- why I am leaning against reconstruction. Finally, I explained that, I kind of feel like I'm going to have to accept a permanently sucky "new normal" no matter what. And I'm beginning to be attracted to the idea of just starting that process now, without putting myself and my body through more trauma and risk. 

There are still specific things that make me queasy -- The idea of putting on a swimsuit, never my favorite thing, and going out in public feels really upsetting. (I'm tearing up tying it.) And, although it's not something I do often, the concept of trying to shop and dress for any kind of formal or dressy occasion is bothersome, too. 

But, day to day, what I mostly feel when I think about it is just relief.

Has anyone been here? Been through anything similar? Have thoughts or experiences to share?

[itsheresomewhere]

One of my friend’s swears that the best thing she did for herself was to not do reconstruction for the 1st year.  She needed more time to process what has happened and to learn to love herself again.  Are you getting any counseling?  It did help her along the process. 

Edited January 26, 2020 by itsheresomewhere

[May]

Is there any reason you can’t wait longer to decide? My mom never had the reconstruction surgery but she was a little older, mid 60’s, at the time. It may be helpful to take some time to get use to this new normal without adding something else. What you decide, do it for you. Blessings on whatever road you take🙏🏻

[Hannah]

My aunt had a double mastectomy and what I learned from her is that you should allow yourself the time to grieve and mourn for the old you that you've lost.   Grief takes time.  You don't have to make immediate decisions and if you still feel after a year that you want to restore that part of your identity, then it will be the time to make the decision.

 

 

[KungFuPanda]

Take your time.  You can put it off indefinitely.  I even know people who did the tattoo choli thing instead of reconstruction.  It's your call and you can do none of it for as long as you want.

[Pen]

.  

 

I would suggest you find out if you schedule a surgery date now due to things booking up, what are cancellation procedures if you don’t feel ready or change your mind.  

 

Depending on the answer to that, either schedule now if you know you can easily change mind later, or wait till u r more sure.

Either way, take your time to decide.  

Maybe see how you actually feel in summer with summer clothes.  

And with more time to feel more like yourself. 

If you do have elective reconstruction surgery, what time of year would be best/least bad for you and your family?  

6 months is late July.  Would that be good? Or would fall perhaps be better?   Some other time? 

[Katy]

Gently, if the idea of putting on a swimsuit ever again makes you tear up, that is a health risk.  Just not the sort of health you ever considered before.

Mental health is health.    But so is trauma and grief.     It is absolutely OK to pick a date (at least six months from now) and decide NOT to decide until then.  Just put it out of your mind until you've gone through all the stages of grief. Put it on your calendar.

And talking about this, even with strangers on the internet, is helpful and good.

[Jenny in Florida]

22 hours ago, Hannah said:

. . . if you still feel after a year that you want to restore that part of your identity, then it will be the time to make the decision.

 

11 hours ago, Katy said:

Gently, if the idea of putting on a swimsuit ever again makes you tear up, that is a health risk.  Just not the sort of health you ever considered before.

Mental health is health.    But so is trauma and grief.     It is absolutely OK to pick a date (at least six months from now) and decide NOT to decide until then.  Just put it out of your mind until you've gone through all the stages of grief. Put it on your calendar.

And talking about this, even with strangers on the internet, is helpful and good.

 

First of all, thank you to everyone who has replied. As usual, your thoughtful comments have helped me think through and articulate my sometimes swirly thoughts.

So, here are some thoughts and feelings I've had in response to the comments posted here:

I've always had a contentious relationship with my body. It's not like, prior to the cancer, I felt beautiful and confident in any physical way. I have pretty much always considered my body to be the thing that carries my brain around. Shopping for and putting on a swimsuit was never anything other than unpleasant, despite the fact that I love to swim. My entire goal in terms of dressing myself for the last decade or more has been to appear "presentable" and completely unremarkable, which does make it upsetting for me to now be facing the rest of my life looking and feeling "weird." But all of those feelings of self-consciousness about my appearance aren't new, just ramped up.

I am not capable of "just waiting to see." If I make appointments and put things on my calendar, I will know they are there and feel like I am moving towards that eventuality. I can do that with things that don't matter, but not with this.

In terms of "restoring" and part of my identity, I think this is my big revelation from the past couple of weeks: I can't. There are simply large parts of myself and my pre-cancer world that are gone now. 

• The me who moved through my days just kind of assuming that I didn't have cancer and had no reason to think I would is gone.
• The me who hoped/believed that I was well positioned to kick off the next (and final) phase of my career with energy and enthusiasm, that this job would finally be the fresh start I have been working toward since I finished homeschooling . . . that's gone, too. I still have the job, but the opportunity to hit the ground running and really show what I can do is gone.
• The me who never bothered to question whether her adult children would show up for her when she needed them is gone.
• The breasts I had carried around with me for the last few  decades are gone. They aren't coming back. I can have a doctor Frankenstein some lumps of flesh from one part of my body to another, but they wouldn't be my breasts, the ones that got me teased in junior high or nursed my babies. They would just be . . . there. 

At some point, I have to accept the new normal that incorporates all of the above. And I can start trying to live in that new normal now, with the body I have now, or I can do it later after forcing myself through an invasive, traumatic surgery that won't actually change any of the things about this that matter.

Edited January 27, 2020 by Jenny in Florida

[CAJinBE]

I think that not doing the reconstruction is a very valid choice. There are risks associated with that surgery. I hate to even mention it, but since you are posing the question, I had a friend who survived breast cancer only to die from a blood clot right after the reconstruction surgery. She was sitting up in bed one minute and gone the next. This is a difficult decision that no one can really answer until you're personally faced with it. 

I'm very sorry you are going through this. It won't hurt to wait until you are sure. Hugs.

[Jenny in Florida]

1 minute ago, CAJinBE said:

I think that not doing the reconstruction is a very valid choice. There are risks associated with that surgery. I hate to even mention it, but since you are posing the question, I had a friend who survived breast cancer only to die from a blood clot right after the reconstruction surgery. She was sitting up in bed one minute and gone the next. This is a difficult decision that no one can really answer until you're personally faced with it. 

I'm very sorry you are going through this. It won't hurt to wait until you are sure. Hugs.

 

Thank you.

And, yes,there are even more risks than I realized. It was only after I had actually said out loud to my husband that I was leaning towards not doing to reconstruction that I stumbled across this study: https://jamanetwork.com/journals/jamasurgery/article-abstract/2685264

Of course, the article doesn't clearly state what they considered a "complication," but it's still more than a little concerning. 

[Soror]

I have no words of wisdom or btdt advice but I wanted to offer hugs and support. I cannot begin to imagine what I would do and won't pretend to know. I am happy to hear you have the support of your husband through this difficult time, prayers for peace for your decision, no matter what you choose.

[fairfarmhand]

1 hour ago, Jenny in Florida said:

 

 

First of all, thank you to everyone who has replied. As usual, your thoughtful comments have helped me think through and articulate my sometimes swirly thoughts.

So, here are some thoughts and feelings I've had in response to the comments posted here:

I've always had a contentious relationship with my body. It's not like, prior to the cancer, I felt beautiful and confident in any physical way. I have pretty much always considered my body to be the thing that carries my brain around. Shopping for and putting on a swimsuit was never anything other than unpleasant, despite the fact that I love to swim. My entire goal in terms of dressing myself for the last decade or more has been to appear "presentable" and completely unremarkable, which does make it upsetting for me to now be facing the rest of my life looking and feeling "weird." But all of those feelings of self-consciousness about my appearance aren't new, just ramped up.

I am not capable of "just waiting to see." If I make appointments and put things on my calendar, I will know they are there and feel like I am moving towards that eventuality. I can do that with things that don't matter, but not with this.

In terms of "restoring" and part of my identity, I think this is my big revelation from the past couple of weeks: I can't. There are simply large parts of myself and my pre-cancer world that are gone now. 

• The me who moved through my days just kind of assuming that I didn't have cancer and had no reason to think I would is gone.
• The me who hoped/believed that I was well positioned to kick off the next (and final) phase of my career with energy and enthusiasm, that this job would finally be the fresh start I have been working toward since I finished homeschooling . . . that's gone, too. I still have the job, but the opportunity to hit the ground running and really show what I can do is gone.
• The me who never bothered to question whether her adult children would show up for her when she needed them is gone.
• The breasts I had carried around with me for the last few  decades are gone. They aren't coming back. I can have a doctor Frankenstein some lumps of flesh from one part of my body to another, but they wouldn't be my breasts, the ones that got me teased in junior high or nursed my babies. They would just be . . . there. 

At some point, I have to accept the new normal that incorporates all of the above. And I can start trying to live in that new normal now, with the body I have now, or I can do it later after forcing myself through an invasive, traumatic surgery that won't actually change any of the things about this that matter.

I'm so sorry about the bolded. And I don't know the ins and outs of your situation.

 

But a little perspective from a person who was 19 when her mom was diagnosed with cancer:

I  see that your children, while still adults, are in their 20s. My mom was ill when I was in my 20s. I wasn't there for her like I should've been. In my mind it was "Oh, it's cancer, she'll have treatment and it'll be okay." In other words, I didn't realize that my mom did indeed need me very much and I missed out on supporting her like I should've. But, like so many 20 somethings, I was wrapped up in building my own life and taking for granted that my mom would always be there. Huge, huge regret. 

20 somethings are often crappy at providing support for others. They just are. I hate it for you, I know it has to hurt. But do have hope that in the future, they may come to realize that you need them and step up to be supportive for you.

[theelfqueen]

I think choosing not to do reconstruction is a perfectly acceptable, even beautiful decision. Self acceptance is beautiful. Making decisions that to feel are best for you, that's amazing. 

Reconstruction can also be beautiful.

Like you said, you have to come to terms with the new you, on so many levels. Whether reconstruction surgery is part of that or not is 100% your decision. 

When it comes to swimsuits - everyone should wear rash guards not skin baring suits. Maybe you can find one that gives you more comfort! 

[Pen]

It sounds like you are decided against. And that’s a perfectly fine decision. Physically it is probably much safer than risks from reconstruction surgery.   And much less appointments, doing, post op pain...

 

I hope you can settle into that decision and be at peace.  

[Carol in Cal.]

I’m not sure how women adjust to not having a protrusion in their clothing after this surgery, but what I AM sure is that there are lots of women who have done just that, in various ways, and that if I were inclined to end up in that position by skipping a surgery that is possibly dangerous AND would delay my getting on with life, I would be searching them out to figure out what various approaches to that adjustment have been tried, and trying them on for size mentally myself.  I’ll bet there are hacks that would never have occurred to me, and I’ll bet that they are documented in some online group somewhere.  Just saying.

Also, something else to consider is the question of scar tissue.  I had major abdominal surgery in my late 20s, and it left me with a ‘bikini’ scar that is a sensitive area of my body to this day.  It doesn’t hurt or even itch but somehow it is very sensitive.  I can’t stand to have direct pressure on it, even just an underwear band.  If I were considering further surgery, I’d be trying to figure out where the new scars would be and whether I could dress around them comfortably, along with all of the other considerations that you mentioned.  

Hugs to you!  You are getting on with life NOW, no matter what direction you go with this decision.

[Tiberia]

I had my left breast removed after cancer. I opted for no reconstruction, and I'm at peace with my decision. I had to have several cancer surgeries, and I got to the point where I just didn't want any more surgeries or procedures unless they were absolutely necessary to save my life. I wanted to get on with my life and work back to a decent level of fitness and health. 

I have a prosthetic breast that works well for me. I don't mind looking at the scar; it's just part of my journey now. I do know that the scarring is traumatic for many women, so I believe you must work through your grief at your own pace. Counseling or a support group may be a good option to help you work through your loss. YMCA offers free Livestrong cancer support classes for survivors. The classes go for a couple of months and involve group talking and support and exercise/nutrition support.  

I swim, and had to research a little to find a swimming boob and suit that worked for me. Land's End has a great selection of mastectomy suits of all styles, with prosthetic pockets on both sides. For swimming prosthetics, I just buy cheap foam breast puffs from Amazon. For daily life, I use an expensive prosthetic that insurance covers. I found some really comfortable mastectomy bras at the cancer boutique shop that sells the prosthetics. 

Everyone's journey is different. You may want reconstruction and it may be the best option for you. Or you may decide against it. It sounds like you may need to take more time to grieve and recover right now. This is not a decision you must make right now. Give yourself time and space to get some equilibrium back. I'm sorry for your new normal, but I believe the core YOU is still in there and still fighting for a great and joyful life. 

All the best

[Jenny in Florida]

50 minutes ago, Carol in Cal. said:

I’m not sure how women adjust to not having a protrusion in their clothing after this surgery, but what I AM sure is that there are lots of women who have done just that, in various ways, and that if I were inclined to end up in that position by skipping a surgery that is possibly dangerous AND would delay my getting on with life, I would be searching them out to figure out what various approaches to that adjustment have been tried, and trying them on for size mentally myself.  I’ll bet there are hacks that would never have occurred to me, and I’ll bet that they are documented in some online group somewhere.  Just saying.

Also, something else to consider is the question of scar tissue.  I had major abdominal surgery in my late 20s, and it left me with a ‘bikini’ scar that is a sensitive area of my body to this day.  It doesn’t hurt or even itch but somehow it is very sensitive.  I can’t stand to have direct pressure on it, even just an underwear band.  If I were considering further surgery, I’d be trying to figure out where the new scars would be and whether I could dress around them comfortably, along with all of the other considerations that you mentioned.  

Hugs to you!  You are getting on with life NOW, no matter what direction you go with this decision.

 

I have spent a lot of time with my friend Google searching out information about "living flat." There are a number of blogs I have perused. Thus far, I haven't resonated meaningfully with any of them, for a variety of reasons. In general, though, one of the things that draws me towards making this choice is the simplicity of it. I will need to learn how to dress a new body -- although for day-to-day basics, I won't need to make a lot of changes. If I settle on no reconstruction, my intention would be to just "go flat" full time, meaning no prosthetics or fake boobs. I will need shirts in smaller sizes, especially if I manage to lose some weight, as I would like to do (and would benefit from with or without boobs), but I see no need for hacks, really.

And, yes, the scarring/scar tissue is a big deal. The way I happened upon that JAMA article was actually looking for photos of DIEP reconstructions to show my husband. The surgeon showed me a few when I went for the consult, and I was trying to describe the scarring and general appearance to my husband. I never did find any really good, clear photos to share with him, but I found enough to make my point. The DIEP surgery does leave a sometimes fairly prominent abdominal scar, as well as distinctive "stitching" on the reconstructed breasts. I've never been a bikini-wearing girl, so that's not a huge issue. However, if one of my concerns now is the existing scarring and disfigurement that I already have, I am beginning to feel pretty strongly that MORE scarring likely won't make me feel a whole lot more comfortable when I see myself naked.

[catz]

It is totally understandable why you are struggling and grieving.  Choosing not to have reconstruction is absolutely fine if you want to be done with medical procedures and are concerned about risk.

But gently, from your tone, it sounds like you could use some help/support dealing with what is essentially trauma.  I had a major health crises which included a brush with death when my kids were young and what made it worse was anxiety and depression and almost PTSD from dealing with the medical end of it.  Therapy was extremely helpful to me in sorting out what was traumatic, what I was circling on in my brain that was just normal, how to interpret how other people were reacting, etc.  I attended a support group for a short time too and used some meds for a time too.  In a matter of a few months, my head was on much more straight and I was processing day to day stuff in a much healthier way.  Not everything felt so overwhelming. I was able to communicate my needs and feelings much clearer.  

I also agree young adults aren't great at naturally jumping in and being supportive.  I've learned over the years I need to very explicitly ask when I need something.   I know I haven't always dropped everything and been able to run when my parents needed something and I certainly haven't been good about verbalizing when I feel bad about it because I feel like they haven't needed to deal with my guilt on top of their crises.   When it comes to other people's reactions in a time a crises and need, I try to assume people are doing the best they can with the tools and time they have at the moment.  If I really need something, I ask explicitly.  I'm sorry you feel like your kids haven't stepped up like you hoped.  But I know you've been a wonderful parent to them and I'm sure they love you.  

[Jenny in Florida]

28 minutes ago, Tiberia said:

I had my left breast removed after cancer. I opted for no reconstruction, and I'm at peace with my decision. I had to have several cancer surgeries, and I got to the point where I just didn't want any more surgeries or procedures unless they were absolutely necessary to save my life. I wanted to get on with my life and work back to a decent level of fitness and health. 

I have a prosthetic breast that works well for me. I don't mind looking at the scar; it's just part of my journey now. I do know that the scarring is traumatic for many women, so I believe you must work through your grief at your own pace. Counseling or a support group may be a good option to help you work through your loss. YMCA offers free Livestrong cancer support classes for survivors. The classes go for a couple of months and involve group talking and support and exercise/nutrition support.  

I swim, and had to research a little to find a swimming boob and suit that worked for me. Land's End has a great selection of mastectomy suits of all styles, with prosthetic pockets on both sides. For swimming prosthetics, I just buy cheap foam breast puffs from Amazon. For daily life, I use an expensive prosthetic that insurance covers. I found some really comfortable mastectomy bras at the cancer boutique shop that sells the prosthetics. 

Everyone's journey is different. You may want reconstruction and it may be the best option for you. Or you may decide against it. It sounds like you may need to take more time to grieve and recover right now. This is not a decision you must make right now. Give yourself time and space to get some equilibrium back. I'm sorry for your new normal, but I believe the core YOU is still in there and still fighting for a great and joyful life. 

All the best

 

Thank you so much for sharing your experience.

At the moment, I wear a pocketed bra with prosthetics mostly when I go to work or to any kind of "dress up" occasion. Otherwise, day to day at home or just running errands or meeting friends for lunch, I go flat. I have one bra that I was fitted for not long after surgery that does have pockets, but I don't use them that I wear just for a little bit of coverage/security and to kind of hold in place the bit of skin I still have. If I decide against reconstruction, I will likely give up wearing the fakes at all and try to find some simple, comfortable bra-like contrivances that serve the same purpose. I think it will make life a lot simpler not switching back and forth.

I've been doing a lot of searching online for swimsuits that might work, and virtually all I have found so far in the way of suits intended for post-mastectomy wear is pocketed suits intended for use with prosthetics. I read one article that suggested Lands End makes at least one suit that is lined but has no pockets, but it seems they have stopped making that one. I'm sure there are options out there that would theoretically fit, but I would like to find something that might possibly be just a little bit flattering.

[Tiberia]

7 minutes ago, Jenny in Florida said:

 

I've been doing a lot of searching online for swimsuits that might work, and virtually all I have found so far in the way of suits intended for post-mastectomy wear is pocketed suits intended for use with prosthetics. I read one article that suggested Lands End makes at least one suit that is lined but has no pockets, but it seems they have stopped making that one. I'm sure there are options out there that would theoretically fit, but I would like to find something that might possibly be just a little bit flattering.

For the Land's End Mastectomy suits, you don't have to use the pockets. I use the pocket only on the left side. You wouldn't have to use either pocket if you want to go flat. The pocket area provides an extra layer of fabric, that's all. Non-mastectomy people could also use the mastectomy suits if they wanted to, so you could go flat with them. The neckline tends to be a little higher so when you bend over, the scars are not easily seen. Hope that helps. 

[Jenny in Florida]

12 minutes ago, FuzzyCatz said:

I also agree young adults aren't great at naturally jumping in and being supportive.  I've learned over the years I need to very explicitly ask when I need something.   I know I haven't always dropped everything and been able to run when my parents needed something and I certainly haven't been good about verbalizing when I feel bad about it because I feel like they haven't needed to deal with my guilt on top of their crises.   When it comes to other people's reactions in a time a crises and need, I try to assume people are doing the best they can with the tools and time they have at the moment.  If I really need something, I ask explicitly.  I'm sorry you feel like your kids haven't stepped up like you hoped.  But I know you've been a wonderful parent to them and I'm sure they love you.  

 

I really don't want to get into a lot of depth about this, but the issue isn't that they just kind of failed to jump in; it's that they -- one, in particular -- actually created a situation that left me worse off emotionally than I would otherwise have been. That person insisted on "being here" even though some underlying circumstances made it complicated to make that happen, which then led to an extremely upsetting incident that got dumped into my lap to resolve.

And I found that, even when I did tell them explicitly what I needed -- and more often, what I couldn't do for them and why -- those boundaries were repeatedly pushed and outright dismissed.

I have verbalized these feelings to the one of the two whom I know will handle it with something resembling grace, and have been met with deflection and just short of a shrug. I do believe that person feels badly about the situation, but I have not seen any change in behavior as a result. (I'm trying to be really fair and respectful in the way I write this, recognizing that the person who played a central role in the incident did not intend harm. But that person is so tender on this topic that even mentioning it to them would be problematic.)

I am certain they love me in the best way they can. It just really, really wasn't what I needed or naively hoped I deserved.

[fairfarmhand]

2 minutes ago, Jenny in Florida said:

 

I really don't want to get into a lot of depth about this, but the issue isn't that they just kind of failed to jump in; it's that they -- one, in particular -- actually created a situation that left me worse off emotionally than I would otherwise have been. That person insisted on "being here" even though some underlying circumstances made it complicated to make that happen, which then led to an extremely upsetting incident that got dumped into my lap to resolve.

And I found that, even when I did tell them explicitly what I needed -- and more often, what I couldn't do for them and why -- those boundaries were repeatedly pushed and outright dismissed.

I have verbalized these feelings to the one of the two whom I know will handle it with something resembling grace, and have been met with deflection and just short of a shrug. I do believe that person feels badly about the situation, but I have not seen any change in behavior as a result. (I'm trying to be really fair and respectful in the way I write this, recognizing that the person who played a central role in the incident did not intend harm. But that person is so tender on this topic that even mentioning it to them would be problematic.)

I am certain they love me in the best way they can. It just really, really wasn't what I needed or naively hoped I deserved.

Oh yuck. I am so sorry.

If I remember correctly, there are some complicated dynamics at play even on "normal" days. I hate that stuff got dramatic at a time when you are yourself struggling.

 

[catz]

I'm sorry.  😞  20 something brains really are still in development.  My 19 year old has done some things lately that I'm glad I'm not having to deal with when I'm in crises.  Hoping those neurons keep fusing and maturity keeps developing.  

[ktgrok]

5 hours ago, Jenny in Florida said:

 

 

First of all, thank you to everyone who has replied. As usual, your thoughtful comments have helped me think through and articulate my sometimes swirly thoughts.

So, here are some thoughts and feelings I've had in response to the comments posted here:

I've always had a contentious relationship with my body. It's not like, prior to the cancer, I felt beautiful and confident in any physical way. I have pretty much always considered my body to be the thing that carries my brain around. Shopping for and putting on a swimsuit was never anything other than unpleasant, despite the fact that I love to swim. My entire goal in terms of dressing myself for the last decade or more has been to appear "presentable" and completely unremarkable, which does make it upsetting for me to now be facing the rest of my life looking and feeling "weird." But all of those feelings of self-consciousness about my appearance aren't new, just ramped up.

I am not capable of "just waiting to see." If I make appointments and put things on my calendar, I will know they are there and feel like I am moving towards that eventuality. I can do that with things that don't matter, but not with this.

In terms of "restoring" and part of my identity, I think this is my big revelation from the past couple of weeks: I can't. There are simply large parts of myself and my pre-cancer world that are gone now. 

• The me who moved through my days just kind of assuming that I didn't have cancer and had no reason to think I would is gone.
• The me who hoped/believed that I was well positioned to kick off the next (and final) phase of my career with energy and enthusiasm, that this job would finally be the fresh start I have been working toward since I finished homeschooling . . . that's gone, too. I still have the job, but the opportunity to hit the ground running and really show what I can do is gone.
• The me who never bothered to question whether her adult children would show up for her when she needed them is gone.
• The breasts I had carried around with me for the last few  decades are gone. They aren't coming back. I can have a doctor Frankenstein some lumps of flesh from one part of my body to another, but they wouldn't be my breasts, the ones that got me teased in junior high or nursed my babies. They would just be . . . there. 

At some point, I have to accept the new normal that incorporates all of the above. And I can start trying to live in that new normal now, with the body I have now, or I can do it later after forcing myself through an invasive, traumatic surgery that won't actually change any of the things about this that matter.

Are you getting any counseling?

I'd highly suggest it for a few reasons. 

1. You have been through a trauma - a major one. You need to grieve the future and present you planned and adapt to whatever takes its place. That will be different - maybe not worse, but different. Help with that would be huge. And of course, you have faced your mortality in a way that others may never do, and help with that would be good. 

2. It sounds like you were never truly comfortable with your body/physicality even before this happened. That you reached a stalemate of sorts with it, but that's it. And now all that discomfort has doubled down on you, and you have lost ground. That sucks, and isn't fair. But it also is perhaps a chance to revisit those feelings and come out with something better than a stalemate, you know? A good therapist might be able to help with that. 

3. You have talked about wanting to not be noticed, etc and perhaps that also is something that would benefit from being addressed. 

4. Might be able to talk about all the family drama with an outside person, which I'd think would be valuable. Your husband probably feels a need to either fix it, or not take sides, or support one over the other, and that makes talking with him messy. An outsider to hear you and not judge you would be a good thing. And since you'd be there anyway, might as well get your money's worth 🙂

 

[Pen]

You might also find that a seamstress or tailor could alter something for you.  Maybe something with sleeves so scars etc aren’t an issue (I usually ise sleeves because of melanoma problems). 

(And some of these styles sometimes look pretty good on flatter chests, like a ballerina top look. ) 

 

AXESEA Womens Long Sleeve Rash Guard UV UPF 50+ Sun Protection Printed Zipper Surfing One Piece Swimsuit Bathing Suit (Pink, 12) https://www.amazon.com/dp/B077Z3MWY8/ref=cm_sw_r_cp_api_i_1V0lEbDD4FC8T

 

ZESICA Women's Long Sleeve Floral Printed Zip Front Rashguard One Piece Swimsuit Sun Protection Surfing Swimwear Bathing Suit https://www.amazon.com/dp/B07M9R18MR/ref=cm_sw_r_cp_api_i_kP0lEbT5EA9NG

 

Edited January 27, 2020 by Pen

[Arcadia]

I’m flat (size AA) and there are many dressy clothing and casual clothing available for people who are as flat as me. 

As for swimsuit, you might want to wait awhile to shop for a new one as many swimsuits have spandex which can irritate the radiation area. 

[Jenny in Florida]

23 minutes ago, kathyintx said:

And therapy or counseling of some kind is great if you think it will help you.  But the thing that seemed to help me the most was to talk to other people who had actually HAD cancer, and recovered from it.  That, and just getting back to doing the things I had been doing before my life was turned upside down for a year.  

I hope you find the peace you're seeking with the whole thing, including with the family member who's not handling things as well as you'd hoped.

 

Thank you for speaking up. Yes, I totally get the "NO MORE" feeling, and I do think that's part of my reluctance to sign up for reconstruction. After making it all the way until my late 40s without any invasive medical procedures, I ended up having gallbladder surgery, a thyroidectomy and then the mastectomy within just a few years. Prior to having the thyroid removed, I went through several years of trying various things, including multiple hospital stays and irradiation and medication, to get that under control. And I am still in treatment for one other chronic issue. I'm tired of having my life and my schedule ruled by doctor's appointments. I'm tired of having to go to my managers over and over again to explain why I can't be in that meeting or finish this project on time. It's just . . . enough.

And, while I do believe in counseling, at the moment the idea makes me recoil, because all I can see is how it would fill up my calendar with yet more appointments. (Also, I have made a few attempts at reaching out in the past, including when the underlying issue with my kids initially blew up and again just recently when I fell into a really deep depression following the mastectomy. For me, thus far, it has been of very limited help. I realize that the standard answer to that is that I either a) haven't given it enough time or b) haven't found the right counselor. But, for right now, my response is "See comment about calendars and appointments above.")

I'm sorry you also fell down the cancer rabbit hole. I hope your recovery is going well.

[ktgrok]

1 hour ago, Jenny in Florida said:

 

Thank you for speaking up. Yes, I totally get the "NO MORE" feeling, and I do think that's part of my reluctance to sign up for reconstruction. After making it all the way until my late 40s without any invasive medical procedures, I ended up having gallbladder surgery, a thyroidectomy and then the mastectomy within just a few years. Prior to having the thyroid removed, I went through several years of trying various things, including multiple hospital stays and irradiation and medication, to get that under control. And I am still in treatment for one other chronic issue. I'm tired of having my life and my schedule ruled by doctor's appointments. I'm tired of having to go to my managers over and over again to explain why I can't be in that meeting or finish this project on time. It's just . . . enough.

And, while I do believe in counseling, at the moment the idea makes me recoil, because all I can see is how it would fill up my calendar with yet more appointments. (Also, I have made a few attempts at reaching out in the past, including when the underlying issue with my kids initially blew up and again just recently when I fell into a really deep depression following the mastectomy. For me, thus far, it has been of very limited help. I realize that the standard answer to that is that I either a) haven't given it enough time or b) haven't found the right counselor. But, for right now, my response is "See comment about calendars and appointments above.")

I'm sorry you also fell down the cancer rabbit hole. I hope your recovery is going well.

I totally get that. But if it does become something to explore, maybe online counseling might be an option? I'd assume the times are more flexible. 

[scrapbookbuzz]

Jenny, you've mentioned a couple of times how the reconstruction surgery would be more invasive than anything you've yet gone through. 
To me, that's you trying to tell yourself you really DON'T want to go through with it. And there's no "should" here. It's totally your choice and it sounds 
like you just want to be DONE. So be done. I understand the self-consciousness of wondering what people think. I can tell you this - most people are 
too wrapped up in their own issues to really take notice of your chest area. I'm thankful you're alive! Even if I don't know you personally, I truly am thankful
you're alive. Many people don't make it through the fight with the cancer. You've gone through the wringer and have come out the other side still fighting. 
Exhausted and close to worn out? Absolutely. Yet still pushing forward. YOU are a warrior. Give yourself grace. Give yourself time. If you want to schedule that 
consult, but still aren't sure if you want the surgery, schedule the appointment as FAR out into the future as you can. In the meantime, take time to journal, pray,
meditate, discuss with friends if you want. Then, when it comes time to really make a decision, you will most likely be a in a much better place to do so. There is
absolutely NO need to rush on this. Breathe. Now, breathe again. And again. You will figure it out. It doesn't have to be today. 😉

[zimom]

DIEP about 18 months ago followed by 2nd phase surgery.  I need a 3rd phase surgery and I just don't have the energy for it.  Hindsight I would have gone flat.   I was a stomach sleeper before all this and I still can not lay comfortably on my stomach.  I think I would be able to if I did not have reconstruction.   To me, just not worth it.  Just my 2 cents.   Ultimately, you just have to decide what is right for you.  

[Jenny in Florida]

3 hours ago, ZiMom said:

DIEP about 18 months ago followed by 2nd phase surgery.  I need a 3rd phase surgery and I just don't have the energy for it.  Hindsight I would have gone flat.   I was a stomach sleeper before all this and I still can not lay comfortably on my stomach.  I think I would be able to if I did not have reconstruction.   To me, just not worth it.  Just my 2 cents.   Ultimately, you just have to decide what is right for you.  

 

That sounds just exhausting. I'm sorry the path hasn't been smoother for you.

I very much appreciate you sharing your story, though. Thank you.

[Jenny in Florida]

4 hours ago, scrapbookbuzz said:

Jenny, you've mentioned a couple of times how the reconstruction surgery would be more invasive than anything you've yet gone through. 
To me, that's you trying to tell yourself you really DON'T want to go through with it. And there's no "should" here. It's totally your choice and it sounds 
like you just want to be DONE. So be done. I understand the self-consciousness of wondering what people think. I can tell you this - most people are 
too wrapped up in their own issues to really take notice of your chest area. I'm thankful you're alive! Even if I don't know you personally, I truly am thankful
you're alive. Many people don't make it through the fight with the cancer. You've gone through the wringer and have come out the other side still fighting. 
Exhausted and close to worn out? Absolutely. Yet still pushing forward. YOU are a warrior. Give yourself grace. Give yourself time. If you want to schedule that 
consult, but still aren't sure if you want the surgery, schedule the appointment as FAR out into the future as you can. In the meantime, take time to journal, pray,
meditate, discuss with friends if you want. Then, when it comes time to really make a decision, you will most likely be a in a much better place to do so. There is
absolutely NO need to rush on this. Breathe. Now, breathe again. And again. You will figure it out. It doesn't have to be today. 😉

 

Well, no, stating the fact that the reconstruction would be more invasive is just kind of true. Mastectomies are relatively uncomplicated surgeries, as I understand it (and as both the surgeon who did my mastectomy and the one I consulted about reconstruction explained it). However, the DIEP, or really any of the autologous reconstruction approaches, is more complex. It involves surgery on both the donor site -- in my case, it would be the lower abdomen -- and the chest. It involves reattaching blood vessels using microsurgery. 

One easy way to compare the complexity of a mastectomy to DIEP is that a typical mastectomy takes 2-3 hours and usually requires only an overnight in the hospital. The initial DIEP, on the other hand, is more like 6-8 hours and a five-day hospital stay. And, as ZiMom reminded me, another couple of follow-up surgeries are often required to touch up the abdominal scar and the shape of the new breasts.

So, while it is true that I am leaning towards not proceeding with reconstruction for a variety of reasons, the fact that I've mentioned the invasiveness of this process is not about me talking myself into or out of anything. It's just me being aware of the information.

As far as being a warrior, although I recognize that these words are offered out of kindness, and I appreciate the impulse, I don't personally connect with the imagery. I do not feel like or aspire to be a fighter. Cancer, for me, isn't an epic foe. It's just a thing that happened to me and that I am dealing with as best I can. 

Edited January 28, 2020 by Jenny in Florida

[zimom]

I would say I had an 'easy' recovery and I was down, down, down for a good 6-8 weeks and it took at least 6 months of recovery.  I don't remember a thing of the 5 days I was in the hospital.   Unusual family situation right now but I had great friends that pitched in and my youngest daughter was just incredible and took care of everything for weeks on end.   My arms were weak for 12 months.  I had a great side effect of a frozen shoulder on my left side that took 18 months to get back to 90% mobility.  My abdomen scar really doesn't bother me at all and I did have easy healing there.   

I had a good friend that had poor healing with her abdomen and it was open for over 4 months.  Guessing that is worse case scenario.

Weird side effect is that I don't really have great feeling along my abdomen area/scar but recently I will have occasional itching.  However if I go to scratch the itch I don't feel my scratching  LOL   

 

Edited January 28, 2020 by ZiMom

[G5052]

I have several friends who waited until they felt like it right for them, and one that got used to it and never did. The one who never did bought a more expensive set-up (not sure what to call it) and left it that way. Other than knowing as her friend, you would never think that she wasn't natural.

[Jenny in Florida]

8 hours ago, ZiMom said:

I would say I had an 'easy' recovery and I was down, down, down for a good 6-8 weeks and it took at least 6 months of recovery.  I don't remember a thing of the 5 days I was in the hospital.   Unusual family situation right now but I had great friends that pitched in and my youngest daughter was just incredible and took care of everything for weeks on end.   My arms were weak for 12 months.  I had a great side effect of a frozen shoulder on my left side that took 18 months to get back to 90% mobility.  My abdomen scar really doesn't bother me at all and I did have easy healing there.   

I had a good friend that had poor healing with her abdomen and it was open for over 4 months.  Guessing that is worse case scenario.

Weird side effect is that I don't really have great feeling along my abdomen area/scar but recently I will have occasional itching.  However if I go to scratch the itch I don't feel my scratching  LOL   

 

 

I'm impressed with your interpretation of "easy." That sounds rough!

For what it's worth, I have the same lack of sensation with occasional itching thing on the underside of my left upper arm. I have been told the loss of sensation may be more or less permanent. Fun, right?

Again, I am truly grateful for your generosity in sharing your experience. 

[Carol in Cal.]

9 hours ago, ZiMom said:

I would say I had an 'easy' recovery and I was down, down, down for a good 6-8 weeks and it took at least 6 months of recovery.  I don't remember a thing of the 5 days I was in the hospital.   Unusual family situation right now but I had great friends that pitched in and my youngest daughter was just incredible and took care of everything for weeks on end.   My arms were weak for 12 months.  I had a great side effect of a frozen shoulder on my left side that took 18 months to get back to 90% mobility.  My abdomen scar really doesn't bother me at all and I did have easy healing there.   

I had a good friend that had poor healing with her abdomen and it was open for over 4 months.  Guessing that is worse case scenario.

Weird side effect is that I don't really have great feeling along my abdomen area/scar but recently I will have occasional itching.  However if I go to scratch the itch I don't feel my scratching  LOL   

 

Oh, I forgot about the itching but not feeling scratching thing.  I had that after my abdominal surgery, all down the tops of my thighs.  It was such a weird feeling, kind of like partially numb but not completely.  I can’t remember how long it took to repair itself but I vaguely think it might have been 6 months.  When I asked the surgeon about it he expressed surprise, like he had never heard of such a thing, but also told me that it was permanent.  Then it got better.  

[zimom]

3 hours ago, Jenny in Florida said:

'm impressed with your interpretation of "easy." That sounds rough!

Well, despite all that, there was very little pain, I was just knocked on my @$$.  So to me, that made it easy.   And it was nothing like my good friend who had the open abdomen for months on end and had to keep going back into surgery for debridement, etc.  

[appyonthebeach]

I had a mastectomy on one side with an expander and then an implant.  It was a hard decision for me also.  I was tired of all of the doctors appointments and just wanted to be done with everything.  At the same time though, I felt that mentally, it would be better for me to get the implant.  I'm glad I did.  It really helped me feel more "back to normal". 

The only part of it that bothers me is not being able to sleep on my stomach anymore.🙁

[J-rap]

I'm sorry for this difficult time.  I have several friends and a mother who've had mastectomies and have made different choices.  I don't think my mother even had the choice.  She had breast cancer very young (I was a young child), and she's 91 now!  I hope you can wait a bit before you make a decision.  When I have to make an important decision and have so many different and complicated emotions and thoughts going on, I've learned that I really absolutely have to wait.  Eventually, once some of my emotions settle, I find I can make a much clearer decision that feels right.

Also, I wanted to respond to your post about feeling like you have lost hope and zest.  I know it's difficult to believe right now, but you will gain that back again, once this is more behind you.  I went through something so devastating (to me), I didn't think there would ever be a reason to even comb my hair again, or cook a meal again, or look forward to anything at all again.  That continued for some time, until one day, I realized that I was starting to look ahead more than behind.  That continued to the point where I gained back my hope and enthusiasm for life again.  The thing you suffered will always be with you, but it becomes more compartmentalized, and just part of that complicated beautiful experience that is your life.