No reconstruction after double mast

Marketta

im looking to hear from women who have had a double and chose No reconstruction.

iv had a double, temporary implant ( which are s pest) I was considering DIEP hence the implants...... but not sure if the surgery/ reconstruction is worth the $16,000 and Another BIG surgery and recovery. ( yes the tummy tuck and nice breast would be great..... no doubt there at all and I’m sure it’s worth it but anyone not reconstruct and still feel content and happy.
my husband I’d supportive of what ever I choose. I’m quite active, I like to run and exercise and I want to be able to do handstands and cart wheels with my daughter before she gets over it. 
I just hate these implants, I could get them out quickly. But have to wait for DIEP as I had radiation in dec. 🤷‍♀️

Just interested to hear others experience with no reconstruction. Or anyone like me and want or removed these stupid uncomfortable implants?

AllyJay

Hi there @Marketta, thanks for the post. I'm older than you, (58 at diagnosis, now 61). I had a bilateral mastectomy with node clearance on the left, and sentinal node on the right side. I have had no reconstruction, and that was my decision from the start. I think that even if this total shitfest had started twenty years before, I would still have done the same. Different people have different wants, needs and desires, but for me, it was the right choice. The idea of even a tiny amount of breast tissue or skin or nipples, or whatever being left for cancer to rear its ugly head again in the future was not an option. However, having said that, I was stage three, grade three triple positive and due to another medical condition, radiotherapy was not an option after chemo and surgery. So no "mopping up" of any stray cells which hid from the scalpel or the poison. I used to be a 18 DD and have a slight build. (All mine, no silicone there). Being a vertical ironing board now took some getting used to, but when I choose to wear my falsies when going out, nobody else would be any the wiser. I've been married for forty years and my husband loves and cares for me just as much as before. Would I prefer to still have my boobs? Of course, but not after them going feral on me and trying to kill me. 

Marketta

Thank you. You make points I strongly agree with hence my hesitation and constant change of mind.
my diagnosis sounds similar to yours. 

I really appreciate you taking the time to reply x

Sister

I'm 56 and I do try to be as active as possible (when Letrozole lets me) - kayaking, SUPing, walking.  And I like to be able to do things with my teenagers rather than just watch from the sidelines holding the bags.  So movement and strength is important to me.  I would love for someone to wave a magic wand and for a new breast to appear (not the old one - that was evil) but the idea of going through major surgery and recovery, plus the potential for muscle weakness, stops me cold at the moment.  I'm keeping my options open but kind of glad that the surgeon said that the skin is way too tight still.

TonyaM

Hi @Marketta, one of the ladies in my support group is very sporty/active and when she got bc for the second time, decided to have double mastectomy with immediate implants. However,the breast that had had previous radiation kept breaking down and the implant had to be redone in surgery.This happened 7 times in the one year and in the end she told her surgeon to just remove both of them.She is very happy being flat and back to all her activities. For me,I’m lopsided with one boob and it’s annoying but can’t bring myself to have more surgery.

Marketta

To be honest I had decided for no reconstruction but my surgeon insisted I have temp implants to keep my option open for DIEP. I had worked myself to be ok with nothing and now I have implants with spared skin and nipple ( I like the look of them but they are problematic and I have lymphodema) and now I can’t help but wish I had of done as I wanted originally and just not had any reconstruction at all because now I have to go into surgery to have what I didn’t really want anyway removed.
i do worry about reoccurrence and it’s just so frustrating 
thank you everyone for your reply’s x

primek

@SoldierCrab you can probably share your experience..

kmakm

@Flaneuse, you might be able to assist @Marketta with this issue.

Zoffiel

As someone who did not remove the pesky implants when it became obvious my body hated them, I'd say go with your gut on this one.  Like you, I baulked at the idea of moving slabs of fat from one place to another. I  truly wish I'd just accepted  a flat chest as the implants have caused years of grief and irreversible damage. Mxx

[Deleted User]

@Marketta I suspect having no reconstruction is better for your health as having an implant, especially a textured one, can put you at a higher risk of cancer. For mental health a reconstruction is 100% worth it. Get a second opinion on price if you go ahead. I wish I’d had more second or third opinions. Often, the surgeons all have great ideas,  but different recommendations. Some doctors profit at our expense and that’s dodgy. $16000 is outrageous. 

Reconstruction can vary from no gap to quite expensive. I had no out of pocket expenses for a left LD reconstruction in the private system. It was very painful and took a while to recover from, but was worth it. I can understand why people choose to have no reconstruction. There is probably ongoing surgery for me in the future with a small implant as well. All the best with your decision. There’s no rush, sometimes it’s good to sit with the idea a while and see what feels best. 

Marketta

@Zoffiel sorry to hear your troubles. How bad are they! That for your advice. It’s nice to hear people who can relate. No one understands and I feel so alone sometimes. 
I really appreciate the responses. 
Good luck ladies with your journeys and thanks again x

[Deleted User]

All the best @Marketta. 

Flaneuse

Hi @Marketta First of all, I'd say go with your gut feeling and what you originally wanted. The price you're being quoted is ridiculous. I went public (couldn't afford to do otherwise) and have had everything free - including all scans and tests of every kind imaginable. My photo story so far is on the "Breast Reconstruction" group under "Implants". But I'll be adding to it. All our stories are different and mine is one of ups and downs.

I'm a lot older than you, but there are still some relevant factors in my story.

Summary - I had a single-sided mastectomy and immediate expander with titanium mesh sling to keep space for an implant after I'd had chemo and radiation. It's been a nightmare: hard, often painful, digs into me when I bend over. Makes my lymphoedema ache worse. I had no confidence that the changeover to the actual implant would end up being any softer. I also became increasingly worried about having "foreign" material in me. It's been there for 16 months now (while I had chemo and radiation and then waited for that to heal). I had to think long and hard about it and finally went with my gut feeling and said I want it gone. Comfort matters more than anything else now. Having a shape there no longer matters. I've been waiting since March for surgery (busy surgeon delays), which will now occur on 8 August. He has assured me he'll do what I want and make it as tidy as possible.

I could say that in retrospect I wish I hadn't had it done, but if I hadn't, I would have always wondered. The reality is that my diagnosis caught me on the hop with a 20 year-old mindset: decades ago I made a documentary on breast reconstruction options and had always said, "If that ever happens to me, I'll do what some of these wonderful women did, have a flap reconstruction, and I'll be fine." Then got on with life, which included being a very sexually active older woman. So when I got my diagnosis. that original intention kicked in. However, the surgeon I was allocated (not a plastic surgeon) rejected the suggestion, saying my abdominal fat may have been compromised by a 1970s tubal ligation, didn't even inform me that autologous recon with a plastic surgeon would mean waiting for years in the public system, and pushed implants. Lots of angst about wrong communication! I finally - reluctantly - agreed. Over this last Christmas, when I decided to "explant", I asked for another surgeon (who has an excellent reputation) and got him, but have had to wait.

I'm absolutely certain about my decision. 

I wish you well with whatever you decide. It's YOUR choice alone.

Fran xx

Marketta

Thank you @Flaneuse

Zoffiel

I've put some pics up in the Choosing Breast Reconstruction group @Marketta. They are not for the faint hearted but my result, as I'm reliably informed by a series of surgeons, is outside the 'normal.' And, of course, a result of my keloid scar response rather than any poor surgical practices or lack of proper assessment. Weird, as I'm covered in chunky scars which all come with interesting stories (I bloody hate barbed wire and car accidents)
Anyway, like you, I want to do the cartwheels. OK,  I haven't done a cartwheel since I was in my 30s, but I want to be able to halter break yearlings and cut wood, drive for hours and dig holes. I can, but it hurts like all fuck. I'm never going to get better,  I wish I'd reassessed my options earlier. But there was no one to ask who' wasn't at risk of damaging  someones reputation. Theirs or one of their colleagues.
Regardless of the cost (which sounds on the high end of extortionate) talk to to another specialist . And go with your gut. Mxx

Marketta

The cost is because I need 2 plastics. 🙄 $8,000 each and going private so I can do it quickly. 
ill check the photos out.
thanks x