I am 5 years on from a nasty case of inflammatory breast cancer. Luckily I won! Now I am well and back into the thick of life (work full time, 2 kids age 6 and 1), I am thinking about reconstruction as I find I am so limited in the clothes I can wear and just feel frumpy at 40! I would like to hear your stories about if the short term pain of going through LD (i.e. 12- 24 months of hospitals, hassle, healing) is really worth it? Or should I forget it, play with my kids and wear frumpy tops instead? Be honest- I need to hear the reality!
Hi Feebones. I read your post and you sound just the same as i was prior to my Ld 7 weeks ago.
I had mx 2 years ago and i am 53. Just like you i had had enough of hospitals and surgery and to begin with was dead against recon.How wrong i was, since i had my recon my confidence has been boosted big time and i can now buy any clothes at all.No more prosthesis either.
I was in theatre for 8 hours for my op and yes i was sore after. I was told prior to op by surgeon that it would be more painful then mx and he was right, but now i have no pain i wear a bra and have my boob and cleavage back.The feeling every morning when i look down and see a boob where before there was just a ugly scar is worth the discomfort i had initially.
I have a expander in place which i go weekly to have 50 ml of saline put in until it is the desired size when it will be removed and my other side lifted to match.That process is totally painless as it is so numb.
Hope i haven’t given you too much info and if there is ever anything you want to ask please feel free to do so.
I would 100% recommend the op and suggest you go to see a plastic surgeon to get more advice.Worth everything i promise you
feebones
My experience was opposite to mounties so will post it later, had it all typed up but lost it in the ether, maybe crossed with mounties and system could not handle two postings at once.
Hi there,
recon is definately worth it although in my opinion this depends on the type of recon and how good your Plastic Surgeon is!
I was absolutely adamant that I did not want any other part of my body ‘harvested’ (as the surgeon called it) to make me a new breast much to his despair! He insisted I have an LD and said nothing else would give good results but I totally disagreed and so changed Surgeons. I had a tissue expander put in which was filled with saline over a number of weeks until the required size was achieved. I have not had it swopped for an implant yet as I have opted for a second mastectomy next week and will have another expander put in to match. Once I am happy with what size I want them both I will then swop the expanders for imlants and have nipples created also.
You dont have to have an LD and think you should explore all other options of recon before deciding to go ahead.
Clarabelle x
Clarabelle, I hope you don’t mind me asking - did you have an expander following a mastectomy? I am currently taking Xeloda for skin mets, ugh, which appeared 6 weeks after radiotherapy. Recon isn’t an option for me at the mo but I’m clinging on to the hope that one day I may be able to have an expander as I find the mx scar hard to live with. Best wishes, LizaRadley x
It’s been recommended that I have a mastectomy, & offered reconstruction. I’m wanting to do some research on it but am at a loss here to understand all your shorthand!
LD/flaps/implants/expanders . . .
So - I’m hoping the moderator will read this posting & direct me somewhere that is easy-to-understand-jargon-free.
Thanks.
konski
If you can, go for a skin and nipple sparing job and just have an implant as it is MUCH less complicated and gives the best result.
As soon as you start to slice and dice you are talking about suboptimal results no matter how good your surgeon thinks he/she might be.
If you have to have everything removed then:
- Ensure a plastic surgeon is on hand and do not let a breast surgeon work alone, just do NOT allow this, if necessary get a 2nd opinion
- I would personally say avoid LD flap. It is a simpler and shorter op but the results again are not as good as other ops and for the sake of a few hours or weeks of recovery it is not worth it - you will have to live with it for a very long time.
You will get no end of women telling how good their “new breast” is. Caution - it is not, nor will it ever be a breast, it will not function as anything, let alone a breast. Not ALL results are good, there are many failures and poor results and generally women just keep quiet about it and live with it because they think they should be grateful to be alive and rid of the tumour or whatever. Surgeons take advantage of this and therefore when they deliver poor results they blame luck, or your build or anything but their competence.
I suggest you also look in at BCPals where you can actually SEE women’s photographs - this is important because it will more correctly set a lower expectation. See your surgeon’s photos, ask to speak with patients and see some of them, DO YOUR HOMEWORK.
If you are not happy that he/she will do the right job, the right op, a good job then you are ENTITLED to a second opinion so get it and do not worry about upsetting anyone or being awkward or making a fuss.
Good book - Dick Rainsbury - Breast Reconstruction, Your Choice. The BCC leaflet only scratches the surface but worth a look initially.
Keep us posted.
D
Hi Konski
I have put for you below the link to BCC’s publication on breast reconstruction, and another one regarding your operation and recovery I hope you find them useful.
Reconstruction: breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/107
Your operation:
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/100
Could I also suggest that you give the helpline a ring and have a chat with one of the breast care nurses here who will be able to explain more about the jargon used with regard to breast cancer and also answer any questions you may have. Calls to the helpline are free. 0808 800 6000 open Mon to Fri 9am - 5pm and Sat 9am - 2pm
Hope this helps. Kind regards
Jo, Facilitator
Hi all- thanks for your stories. To give you a little more info- I had a mastectomy and radiation,and no chance of immediate recon due to Inflammatory BC- they have to wait 2 years to see if you survive basically- and the surggeon- who I have researched as was the second opnion I’d found- and I was impressed- Dr Baildam at Wythenshawe- said that LD was the only option for me…
I’d like to hear more LD specific stories if you have one- i am a bit overwhelmed by the length of the process as I’d need to have my good boob worked on afterwards for symmetry and matched perkiness…I’m tempted as it would be lovely to feel like I have a matched pair again…but I am wary of adding all this into the mix of a very full life already…anyone with a young family out there had LD? Ladies- would you do it again or would you stay with the prosthesis and save yourself from the length process…I am just not sure…
hi feebones,
my situation is different from yours so i cant answer your question however i wanted to let you know you have got 1 amazing surgeon. he is worth his weight in gold. i wanted him to do my mastectomy privately but it wasnt going to work out due to me staying to far away and having to uproot everything. i know at least 4 ladies he has done recon for and they look fantastic and all went well with them. good luck xx
Each of us makes our own decision about reconstruction, but I feel really annoyed when no reconstruction is equated with wearing frumpy tops.
Ther’s a good website about living well without reconstruction: its breastfree.org
Jane
Hi feebones,
just to give a different take on the reconstruction debate. I am currently recovering from a mastectomy and immediate reconstruction carried out almost 3 weeks ago and I am recovering well. I don’t have young children, mine are aged 16, 18 and 20 and we had GCSEs and A levels to contend with but different problems to yours. I was given good advice from my breast cancer care nurse not to lift anything more than a kettle after coming out of hospital. I wouldn’t do much more than that still now. If you have toddlers to pick up then this could be a problem for a while. talking to a friend yesterday who had mx over 10 years ago with recon at a later date and an implant in the other side to match I was encouraged by her that I had absolutely done the right thing and will be pleased further down the line (I was wondering whether I was right to do he recon as it’s still so sore and feels so solid at the moment but early days).
I was hoping that I could offer some help here but not sure if I have but please feel free to ask me any questions. By the way my surgeon was able to do this op without any cut on my back, he said he hoped to do it that way, pulling the slice of back muscle through a cut under the breast and up to the armpit. Very clever, you should ask about this but not many do it.
good luck with it all.
lee x
Hi All
My LD flop (installed at time of mast a year ago) is described by the surgeon and his BCN nurse as “fantastic, amazing, so good you would not know you’d had the op”. This is not true, at the very least the lack of nipple is a clue. It hurts/tenses/constantly and still leaps from time to time it is huge and anything but perky (did not shrink as predicted), feels like it is dragging constantly and I hate it. The actual physical recovery from the op was a breeze but it feels horrible to the touch (hard and muscular) and inside my body.
But I would have it again because i am depressed enough as it is and I can not imagine how much worse I would feel with nothing at all. Dahlia is right though, it feels nothing like a breast, there is no pleasureable sensation on mine and frankly, the appearance is still shocking to me.
I think reconstruction is offered as a replacement breast and we are encouraged to think of it as such - but it is nothing like a breast though if you are fortunate it may resemble one closely when clothed.
Good luck
Jane x
jane you are so correct we are led to believe it will be the same. i also hate mine and admit it has made me depressed also i also dont know how much worse i would feel. i know i havent healed properly yet as the skin hasnt came back after nearly 6 months due to complications but i have been told i will be badly scarred for life and have 1 nipple for at least a year they wont consider fillers and reshaping for at least a year either. this is all based on my grafts working. i am angry as originally i wanted nothing until i had fully explored all recon and felt rushed and pushed into recon to obtain a better look and here i am in a terrible state and depressed for the 1st time ever. i also know if i put on a good bra others may think i have 1 small breast and 1 large 1 but i know whats underneath. why should i be left to feel uncomfortable dressing in front of my husband because they look horrid. i have been told time and again now they only expect shape under a top well i dont want that i want to like most women feel comfortable. the last time i said i wanted to feel confident on here a few ladies told me i was wrong and should be glad to be alive and its not cosmetic. all of which i agree with BUT does that mean as a women i dont want to feel sexy? im sorry if others dont agree with me but my surgeon had messed up big time all of which he admits and im now a young mum who cries when looking at these things plopped on my body. i do miss have no sensation. i am lucky to not have cancer but a faulty gene and i accept that but i get upset when others tell me to consider myself lucky when all along i was told my op was a 97% success rate and while my breasts wont be perfect i will have a good cosmetic look thats so not true… regarding my feeling sexy comment i am not saying you cant feel sexy with no breasts far from it but its a personal choice and when we are led to believe something that doesnt happen its not nice especially when i now need to accept i will have nothing after all if the grafts dont take. maybe i should have been more persistent about thinking recon over more but im paying the price now xx
I have read that ladies who have a delayed reconstruction are happier with the result than those who have an immediate one. I think it is because the expectations are unrealistic when you have an immediate one. I have had neither - I was not allowed an immediate reconstruction, and am now waiting for my appointment at the reconstruction clinic in September. I have had nearly 2 1/2 years to get used to my scar, and the lack of sensation in the whole area, and I am aware that a reconstruction is cosmetic only, and that there will never be sensation in it. So if I decide to go for it I will be comparing the result with what I have now - a flat chest that causes problems with clothes, problems in the gym changing room. The ladies who have an immediate reconstruction are comparing it with a real breast, so the potential for disappointment is so much greater.
roadrunner i agree with you but i know in my situation and certainly it seems this way with a few others that we can be told the wrong info. i for instance was told i would have some sensation immediately where i now have nothing at all. i was also told my breasts will look very similar to what i had which i dont. i know they cant predict problems however i strongly feel i was misled. that is why i wanted to wait so i could see how i felt about my body without breasts. i always said i didnt expect perfection and i was never thought i would have great new breasts however compared to what i have i regret allowing immediate recon. after the 1st op my breasts were not perfect but i was happy as they looked okay but since they have cut away tissue and nipple etc they dont look good. this is such a personal choice and there is no right or wrong way except whatever we are comfortable with.
Lainey - do not get me started on people who say we are lucky, it si my pet hate! Someone posted here that they say something like “Well, maybe some day you will be lucky too”. we are none of us lucky and I don’t think it matters whetehr we lose our boobs cos of cancer, pre cancer,faulty genes or carelessness (not sure how that would happen) you have still lost a precious part of you and you are justifiably sad.
i am repulsive to look at naked and in pain but no way could I cope without this monstrosity cos at least in clothes it looks passable. How tragic is that?
Also, do not feel guilty cos others are worse off - it does not help them or you. And glass the next person who tells you to be positive or brave etc for me.
Love
Angry upset Jane x
i agree jane that it is tragic for someone to lose their breasts under any circumstances and it should not be graded on how others lose theirs… but i find constantly im told im lucky. perhaps next time i will lift my top and ask if thats lucky lol. its just not fair on us. and it doesnt help i also know some people dont know what to say and feel awkward if only though those people would just say nothing…its just upsetting how we go round our everyday life then something comes and sends it into turmoil… i will never forget the day i got the positive test results it was 3 weeks b4 xmas and i could hardly walk after it as i was so scared. ironically i feel more scared now.x
Thank you ladies for posting so honestly about your recons.
I was dx with IBC in 2005, had the usual treatments followed by rads but developed skinmets quite quickly along my scar line. This is fairly typical with IBC. I had hoped to have recon at some point and was initially told that it could be considered if my mets went and stayed gone for some considerable time. Unfortunately they did almost go but then xeloda stopped working for me and they progressed. They are currently stable with herceptin but I have been told recon is now out of the question.
This was a real blow for me and took a while for me to get my head round. I am now considering having my ‘good’ boob reduced as I find the prothesis quite heavy on my chest wall by the end of the day.
I understand that even if things are not as good as you had hoped after your surgery you are still pleased you went ahead and I am sure that I would feel the same.
Jackie x
jackie that is such a shame and its understandable it came as a shock. i think we would all feel the same. i know my reasons were correct to go ahead but due to being in constant pain as i have no skin on the breasts and it constantly rubs and leaks poison and blood everyday after 6 months i cant say yet i dont have regrets. well im better then perhaps and this is due to how sore i am and how bad they look. all i know is i done the right thing at the time. i should have asked a lot more questions though and would adv anyone in the same boat to ask lots of questions and not to be swayed if they think they are doing the right thing. x