No Reconstruction Downside

royaltea

It's been 6 years since my R mastectomy, living with one breast and using a Foob, either a silicone or foam insert. I find it tolerable, and most days I just stick the thing in my bra and go about my day. Many women have written positively about their decision and I'm glad they did. I felt supported in my decision not to have reconstruction at the time of my surgery. I didn't want an implant under my pectoral muscle. I am active and have a physically active job. I'm not a candidate for any of the muscle flap or other more extensive surgeries, nor do I want that kind of surgery. But I'm really sick of being flat on one side. I wonder if it would be easier to have both breasts gone. I've been thinking of having a pre-pectoral implant, just reading about it and mulling it over. Why after all these years, and I'm now 66....I'm liberal, not a prude, have a great husband-lover, kids, grandkids, successful life, still...

1. The prosthesis is uncomfortable, hot, heavy, or too light and one side of the bra slides up.

2. I really don't look in the mirror at my naked chest for more than a few seconds. I hate the daily reminder.

3. I'm not comfortable being naked with my husband. I just feel unattractive.

4. I'm totally self conscious when I go to the hot springs or the japanese bath and am naked around other people.

5. I feel my sexuality has been affected and I'm less into it. It's hard enough after menopause to have a libido that fires up. and the lack of a a boob...well, it's has a dampening effect. I want to keep my remaining boob, that has some sexual feeling.

6. I hate that I have to wear high necked clothing. And I'm always worried that someone is looking down my chest and can see my belly button when I bend over. This is a big thing for me as I love boat necks, v necks, scoop necks and I look good in them. And a dress with a lower neck, forget about it. Tank tops a no no.

7. Swimming....ack! The swim prosthesis pulls down the suit, and I'm using a 'hacked' nylon scrubber now, which looks better, but when you first go in the pool or water, it releases tons of tiny air bubbles. And then sags when it is heavy with water, so I have to remember to press it as I'm exiting the pool.

8. I have a neuropathic thing with incredible itch of the scar and the prosthesis makes it worse.

9. The numbness and itch are with me daily and annoying. On a scale of 1-10. The itch is a 5-7, sometimes it's higher and unbearable, the numbness is always there. I've tried cannabis salve, lidocaine salve, various herbal thing, Vick's, ice packs, acupuncture, massage. The only thing that is soothing is either my hand or my husband's hand holding the side.

9. I have developed cleavage envy, wierd but true.

I wonder if any one else has similar feelings. I'd love to hear. Breast cancer sucks, mastectomies suck. And I'm aware that I'm here, no cancer, no further treatment other than the mastectomy. And I'm grateful for all that. I have a good life. Maybe I'm in the next stage of acceptance of all this.

ravzari

Honestly, it's such a personal decision it's hard to say whether or not you'd be happy if you reconstructed now.

The recon form has a couple threads about over the muscle implants, but you may need a few rounds of fat grafting as well to avoid having ripples or the implant edges showing since the implant edges are usually hidden by a combination of skin tissue and natural breast tissue (which you obviously would not have on that side). Recon is usually covered by insurance, if you're in the US, if your mastectomy was done for medical reasons and not cosmetic reasons so, basically, if they covered your initial mastectomy, they'll generally cover the reconstruction as well.

Keep in mind it may take more than one surgery to make things look good & even and, depending on the shape/size of your remaining breast, they may recommend a lift or a lift and reduction of that breast to help make it easier to match the implanted side to it and, after 6 years of nothing there, you'd likely have to have tissue expanders for several months first, then an exchange to implants so it's not going to be a 'one and done' procedure.

Recon likely wouldn't affect the nerve issues you're having and could potentially make them worse, so that is something to keep in mind. It's also possible the whole area would go numb which, while better than itching, may not be something worth it for you to risk.

If you'd rather go flat instead of trying to reconstruct the already flat side, check with your insurance company; they may cover the cost of a prophylactic mastectomy on your remaining breast since you'd already be considered high risk for breast cancer if you've already had a tumor or tumors that were removed with the mastectomy you've already had.

That's not risk free either, however; it's possible that, even after 6+ months, you could end up with the same itchiness as you already have and you likely will have numb patches. There isn't a good way to predict prior to having the surgery whether you'd have a similar outcome or not, unfortunately.

Numbness, either in patches or over the whole area, is considered a pretty normal long term side effect due to how many nerves are cut during the surgery; some repair just fine, some partially repair, and some never do. The constant itching isn't really normal though, at least, not 1+ years out; I'm guessing you've probably already brought it up numerous times to doctors though so I won't tell you to do that. You did mention pressure seems to help with it though, have you tried wearing compression tops under your shirt to see if that provides some relief?

My scars and skin were pretty sensitive for close to 8 months after my BMX and I had to wear pretty tight shapewear tops to be able to even wear shirts because loose fabric rubbing on the area bounced between 'kind of annoying' and 'okay that really hurts'. If that's not something you've tried yet, it might be worth a shot.

Peregrinelady

When first diagnosed, I was adamant that I would not have reconstruction. However, the scar from my uni mastectomy itched and was very uncomfortable. I did not think that I would miss having cleavage, but I did. It’s not like I ever showed my cleavage, but the fact that I didn’t have it really bothered me. I got on here and read the reconstruction threads and saw that every single woman was happy with their decision, even if they had complications. The minute I chose to do it, my depression lifted and it gave me something positive to focus on. I did have a blood clot after a revision surgery, but I would still do it again. It is not so much the breasts, but the fact that I feel normal again. I just wanted to not feel like I had been maimed by cancer. I realize that each person has their own decision to make and being flat and fabulous works for some women, but you also have to dig deep and see what works for you.

royaltea

Hi Ravzari, Thanks for your reply. Yes, recon is a personal decision. I wrote because I'm surprised by my changed feelings towards even considering reconstruction. I find I am interested in hearing of other women's experiences with that. It may be because i have my own experience of being one breasted and don't feel a need to know more about that now. I definitely don't want to have my healthy breast removed, so it's either stay as I am or get recon on the other side. I'm in the information gathering stage now. No quick decisions. I was stimulated by meeting a client who had a prepectoral implant after 20 years of flatness, having had a mastectomy when she was 35. And I realized that I wanted to at least check it out. My medical insurance will cover it. However, there are other financial considerations as I'll be out of work for a while and I am the main earner. My husband has a disability and is finishing a graduate program for retraining to work in a field that is less physically demanding than what he used to do. Nothing is simple.

You brought up good points about the possiiblity of the neuropathic itch being worse, and yes, that does keep me where I at now. At least i know what I have.

I'm really moved that you took time to respond, thank you.

ravzari

It's not uncommon to have changes of heart about recon one way or another, at least. It's DEFINITELY something to really think over before making a decision, especially since two of the three options (recon--which might possibly involve surgery on the remaining breast to help make the two more matching, removing the other breast, or doing nothing and staying as is) will involve more surgery, which would obviously mean more downtime and recovery.

If you haven't already, I'd highly recommend reading through the Breast Reconstruction forum on this site as there are a lot of good threads that detail the positives and not so positives of various types of reconstruction. I know there was a thread at one time for women who had recon with an implant over the muscle as well.

Realself.com is also a pretty good site, as they have sections for breast reconstruction and for 'regular' breast augmentations and possibly the breast reduction/lift sections if you're thinking that might be necessary on your remaining breast to get the two as symmetrical as possible; it might be helpful to read through those reviews if you're not already, both the 'worth it' and 'not worth it' ones to get a wider idea of the possible pros and cons of what the outcome could be.

Momine

I do hear you, although my experience is different, and although we all do our best to deal, with or without recon, foobs or whatever, the fact remains that cancer sucks and losing a piece of your body is difficult.

I am for sure not comfortable being naked in any situation. On the other hand, this has been true ever since my child was born. It is not really any worse after the boob loss.

If you feel that you would be more comfortable with a built-in foob, why don't you explore it further, as in talk to a PS?

Denise-G

I had a UMX 6 years ago as well - I certainly can relate to all of your feelings. As time goes on, you get more sick of looking at the reminders even though you are more used to it.

Because I have the Chek 2 gene mutation, I am having my other breast removed in a few months. Not sure how that is going to be. My sister had a Diep Flap with LOTS of complications and additional surgeries. She has great looking "breasts" now, but she earned them. I wouldn't go through what she went through for $1 million. She wouldn't go through it again for $1 million. But you would not be looking at that kind of surgery.

That being said, I agree with Momine that it might be time for you to talk to a PS - what would it hurt? Get your questions answered and have more to consider.

Many, many women have reconstruction years later and are extremely happy they did!

royaltea

I appreciate all of your responses, and thoughts and ideas. It's amazing to get support from this forum. And it's good to know I'm not the only one with ambivalent feelings or the annoying itch. I will take your suggestions to consult with a plastic surgeon and just find out what it all entails, but as I work in the medical field, I realize the PS may present a more positive picture of the procedure. I've worked with many women who had complications and multiple surgeries, and suffered from the supposedly easy solution of an implant. It's been a healing for me just to write my feelings and hear your experiences and suggestions. I did share with my husband more of what I'm feeling; I think I was protecting him from my distress. It's good to give voice to all the sides of mastectomy and breast cancer. I did just have my yearly mammo, and it was fine. Every year there's the nagging thought that I'll have cancer in the other side. So many of you have had more than me to deal with. Sounds like a platitude, but really I have so much compassion for you.

Now to the itch, it's like a pain. Kind of like phantom pain from an amputation. I've talked to doctors, who first look for a dermatitis, but it's neuropathic, as I also get some stabbing pains sometimes. There's a book recently published called Itch about the neurology of itch. I have had some relief from doing some mirror therapy, but it hasn't lasted, I think I'll try it daily. I hold a cheap light full length mirror and have the reflective side facing my breast side. So when I look into the mirror, the reflection looks like I have 2 breasts. Then I can scratch and touch the real breast, and my brain thinks I'm scratching the missing one.

And I've gotten some relief from this cream called Amazing Painless Cream that's made in New Mexico and you can buy it on the web. It gives immediate relief sometimes and it will last. I have to be consistent with applying it a few times a day.

So that's all from me now, thanks again for your support and your sharing. May we all be happy.

Denise-G

I still have the phantom pain itch and stabbing pains. The only things that I found that seems to help it is patting it repeatedly for quite some time.

It is the strangest feeling! You did a great job of describing it!

ravzari

I don't get phantom pains, for which I'm grateful as my breasts themselves were fibrocystic and painful, but I do get phantom BOUNCE.

I had fairly large breasts before and was used to, even in supportive bras, having to 'hold' them to keep them from bouncing too much which was painful and I still feel like I have to hold them even though there's nothing to bounce anymore.

royaltea

Hey Denise, I'll try that. Maybe the continued stimulation tires out the nerves.

thanks

royaltea

Wow Ravzari, I've never heard of that from anyone. Sounds distracting. The brain patterns and nervous system holds onto patterns long after they are useful. There seems to be little research or treatment options for phantom pain or sensations. I've asked a health librarian at Stanford University for any articles and nothing useful came up.

mustlovepoodles

I definitely have mixed feelings about my missing breasts.  I *thought* I was gonna be fine without so-called "fake breasts". Turns out I'm not.  My PS did a one-step recon that went all kinds of wrong, so I was left with terrible scarring.  I can hardly look at myself in the mirror, although DH says it looks better.  Ugh. I don't give him much opportunity to see it. I had no choice but go flat for a long while, due to extreme sensitivity that made it impossible to tolerate anything against my skin.  About 6 months post-BMX I received a set of Knitted Knockers. As soon as I put them in my shirt, I had a surge of self-confidence.  Two weeks later I got my first set of silicone breast forms. I wear them every. single. day. No matter how hot it is outside. They look totally natural and sometimes I forget I'm wearing breast forms.  That is, until it's time to dress for bed or get a shower. Ugh. Don't look! 

I don't have any stinging or itching, but I do get weird sensations when my chest gets cold---it feels just like when your nipples stand up, LOL. Sometimes it feels like my milk lets down. But my whole chest is numb!

I just know one thing: I cannot live like this. I have decided to pursue DIEP reconstruction in NOLA.  I actually was scheduled twice already, once in Feb and again in April. Unfortunately, my mom was ill and she took a turn for the worse about 2 weeks before each appt. After I canceled the second time I decided to just wait it out; Mother was on hospice and it really wasn't the right time to sign up for that kind of surgery. She passed away in June and we ate up the summer and fall getting my house and her house ready for sale. My house closes next week, so it's time for me to contact the Center and get on their calendar again. 

Lula73

mustlovepoodles- I’m so glad things have calmed down for you. It’s been a crazy year. On to the next chapter...

macb04

Hi royaltea, come on by and ask questions about Prepectoral Implant Reconstruction on my thread called

Topic: TE/Implant OVER pectoral Can exercise, comfortable &NO RIPPLES!

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

royaltea

Thanks, macb04, I'll check it out.

windingshores

I have gone flat after BMX and don't use prostheses or anything. I do wear loose clothing because contact between scars and cloth can be irritating. My breasts had kind of gone south naturally, presurgery, so I find my clothing choices have actually expanded. I am single and not interested much in not being single, so for me it is no big deal.

pupmom

After diagnosis, I always knew I wanted reconstruction. I had a lumpectomy with rads, so wasn't really sure this was an option. But it was, and I feel like I look normal now. Ironically, my DH was against recon, because he didn't want me to have another surgery, with all the risks involved. The decision just had to do with my feelings, but we now both like the results. I applaud women who are happy without reconstruction, but I was never among them.