I went back to the Royal Marsden yesterday to see Miss MacNeill and after numerous problems since my bilateral mastectomy and immediate reconstruction with tissue expanders we’ve reached the decision to remove the expanders. My original surgery took place on 23rd July (13 weeks ago) and I still have as much chest tightness and discomfort as I has immediately post-op. I’ve had 2 infections, one on each side, and the left hand implant moves constantly catching on my ribs and making them feel bruised.
4 weeks ago Miss MacNeill said that she didn’t feel the left hand implant would settle without further surgery and to wear a sports bra 24/7. This hasn’t made any difference.
Last week I felt as though I had another infection brewing but my G.P could find no signs of infection in the wound, the implants or anywhere else in my body and said that he felt my body is seeing the implants as a foreign body and reacting as such, i.e. causing me to spike temperatures and feel unwell.
Miss MacNeill agrees with him and said that she has seen this happen 3 or 4 times in her career where a patient develops and inflammatory response to the expanders or a chronic sub-clinical infection that can’t be detected by normal means such as blood tests. In thses cases she said that it’s remarkable how quickly the patient feels better after surgery to remove them.
My surgery is booked for November 28th and I’m relieved that I won’t be in pain any more but disappointed too. I thought long and hard before opting for this surgery as I felt that it would give me the quickest recovery time of all the reconstruction options but at least I tried.
I aslo had my implant removed, I didnt have an immediate reconstruction but was fitted with expanders (although never had the implant expanded). I was OK for a week or so but then started to feel ill, I had 4 lots of oral antibiotics and 2 hospital stays for IV antiobiotics, these didnt work and one weekend I didnt know what to do with myself. My OH was really worried and on the Monday mornng phoned the breast unit and they admitted me straight away and my consultant removed the implant that afternoon, I was so relieved to be painless.
I am still getting over having so many infections but trying each day to build my stamina, I had the back flap op so have the muscle still in the front so it looks like I have 1/2 a boob, I do not know what to do in the future, if to have the implant redone but one of the doctors said there will be no guarantee I wont have another reaction. I am waiting for my new proshesis to fit my 1/2 boob so that at least dressed I will look like I have 2. The only explanation I have been given is my body didnt want to accept a foreign body,I have also tried to find out how many implants reject without luck.
I hope you will feel much better after the op, and being pain free will help. All I can say is if the pain gets too much and you really want to go forward with the op dont suffer see if they can do it earlier for you.
Hi Trudie,
Bless you, you sound as if you’ve been through alot so hope my story helps- think I’ve seen your messages on some of my threads already!
I had bc on right side 2004 (aged 39 yrs)- mx + radiotherapy, followed by prophalactic left mx and bilateral recon with expanders 2005/6. this was a disaster- the expander on right side moved towards under my armpit. I had infections treated with antibiotics which led to trunkal lymphodema. the expander on right side never seemed as big as left, could sometimes feel it moving over my ribs on deep breathing and then started to tighten. My chest felt constantly tight and uncomfortable. When they were expanded the discomfort was awful. It took me a year (or 2!) to get my head around the idea that this wasn’t going to work out and despite my PS saying to try replacing with implants, I did not feel this would be the answer. I simply didnt want to keep putting myself through surgery after surgery, but couldn’t live with this discomfort any longer. My chest felt tight all the time, and very uncomfortable, particulary on right side. Had episodes of redness/imflammation on and off - was told that if you get a viral illness, this can set up as an infection around the expanders!
Anyway, to cut a very long story short, I made the decision to remove them and leave without further surgery, and had this done on 6th oct 2008. After a very tearful first week home coming to terms with everything, I absolutely Know I have made the right decision. Although I have the scars which are still settling, my movement is better already. No tightness, no discomfort, no hard expanders to feel. I can breath normally with no discomfort- its a great feeling. Ok, its not ideal being completely flat chested but I remind myself of all the low points of my expanders when they were in ( wrote down notes so that I could remind myself, as if I would forget!) and I know, for me, this was definately the right decision. I also felt constantly tired and “not quite right” with them in , and saw rheumatologists and had normal blood test results - I felt these symptoms may be related possibly to the expanders and having something foreign inside me. Well, I know its only 2 weeks ago but I feel much better in myself already .Psychological or physical? I don’t know. I was small breasted before this, so I guess that helps me deal with being flat chested. L am know wearing crop tops with softies in place, and looks good! I tell myself that I (we) didn’t put ourselves in this position of being without breasts for a good reason- to live! Having read your story, it sounds very similar to mine, so I understand you taking this decision. I wish you all the very best and am sure all will be fine.
Anne XXXX
Hi Lesley, My Consultant did say that if my body has “rejected” these then they wouldn’t try again with implants as it’s likely to happen again.
Hi Anne, I’m fortunate in that I wasn’t big busted before, like you, so I’m hoping that with softies and eventually good prostheses I’ll look good in clothes. My husband keeps saying, “Just think, you could have different sizes for different occasions!!!” LOL!! But seriously he’s looking forward to seeing me not in pain and able to get myself comfortable easily.
Hi Trudie,
When is your surgery scheduled for removal? I Know your original surgery was 13 weeks ago and you still have this discomfort- mine were in for nearly 3 yrs before I had them removed and I can honestly say my discomfort never really eased, in fact , got worse , especially when I developed the contracture on the right side - my body really had had enough of them ! I really feel that there should be more help out there re: accepting and dealing with change in body image instead of “reconstruct and then all will be fine”. There are loads of unsuccessful recons out there(as well as good ones, I know), but I feel that when things go wrong/ don’t work out the way we hoped the effects on a person whose already been through so much can be devastating. When I was having my removal op (now 2 weeks ago- at East Grinstead) there were other ladies in my bay, all had had recon of various types, young and old, there having their 4th, 5th ops as things had gone wrong etc. At first they couldn’t believe I was getting mine taken out and “giving up” so early, as they put it. But I could see my decision had given them food for thought, especially as I was the youngest there! And by the time we had had our surgery, and it was time to go home and say goodbye, 2 of them actually said that they regretted their decisions now for all this recon and wished that they had never had it done- thats very sad. Another plus of this type of surgery (using expanders) is that it is the “least” traumatic type, ie no transfer of muscle etc. and therefore easier to reverse. I was concerned with how things would look after but the ps did a great job- I have 2 neat masectomy scars (what I would have had anyway!) and no saggyness or anything! Most of all, the relief from the tightness and discomfort is wonderful- I feel like a new woman! I feel that when breasts have to go, they’re gone, and nothing is going to replace them as they were. We should be proud of what we’ve come through . I have tried on my clothes with the softies on and actually think my appearance, in clothes, looks great, if not better and I just can’t wait till I get my new prosthesises-they’ve improved so much in the 4 yrs when I had to wear one before! I’ve also just had my favourite, trendy, non masectomy wear swimming cozzie pocketed free of charge at the sewing room at my hospital ( through the breast nurse) and can’t wait to use it!
Lots of positives to look forward to- the most being comfortable again!! I don’t want to sound as though i am critisiseing those who have had recon (i had it) because there are lots of positive and good stories too- this was just the right thing for me and I hope it helps you to know theres a big light at the end of the tunnel!
Anne XXX
My consultant says she will speak about moving forward next year but I will have to think long and hard before going for more surgery.
Hi Anne
Your post is very positive and for me has made me feel much beeter and am sure it will help Trudie. So it seems you have come across quite a few ladies who have had problems, I was feeling that I was alone and have tried to find others who have been through the same.
I am feeling fairly positve especially after reading this post
Hi Sue, I had mine done 13 weeks ago and have had various problems since ( see my post that started this thread). For me the tihgtness have never worn off and than combined with the left implant moving all the time means it’s intolerable for me to continue,
My surgery is scheduled for November 28th as a day case. I’m hoping to see the Breast Care Nurse beforehand to get some info on comfies, prostheses and bras etc. I don’t know much about that side of things to be honest but as SO lookijng forward to being comfortable again!!!
My reconstruction felt OK at first but after a cuple of weeks felt uncomfortable, I cant really expain the feeling it just didnt feel right. Under the breast however was very uncomfortable and in the end very painful the implant seemed to move upwards and the skin felt very thin around it (I had radiotherapy 13years ago to the breast).
Trudie: you sound like you have really thought about what you want and I am sure you will feel better
Hi Trudie, (and all you other ladies),
Not long to go then for your op! I think its a great idea to see your breast care nurse before your surgery (exactly what I did!) so that you can go through prosthesies etc. beforehand, and get some softies for after your surgery.
I can only reinforce what I’ve said before, and the relief from that discomfort is wonderful, believe me! My recovery time has been really good- as I said, apart from the "emotions all over the place "during the first week (to be expected, I think! ) I have felt so much better than when I had the surgery to have the expanders put in . Its dissapointing, I know, when things don’t turn out the way we had hoped/ wanted. But do you know what? Life goes on, with or without breasts! And compared to how I have felt over the past nearly 3 yrs of discomfort and distress with my expanders, this was a great decision for me. Quality of life!
Lesley, I’m glad if my comments helped- I mean everyone of them . believe me, you are not alone, don’t think you’re on your own in the way of things going wrong with recon. There are good stories about recon and people happy with what they’ve achieved. But believe me, there are some awful stories out there of things going wrong. I see much made about how recon can boost your self image and confidence- I’m sure it can for many ladies (when all is good) but it can also destroy lives when it goes wrong and very little is said about it.
Remember- our breast(s) have been removed for very good reason- removing or preventing bc. Its not our fault! We’ve given it a go with recon, and unfortunately thats not worked out - again, not our fault!
So ladies, I will now climb off my soap box and look forward to talking to you soon!
Anne XXXX
I am in Kent, I just wondered how ner you where. I am going on holiday Monday and will be away for 2 weeks. I will look on site to see how you are going when I get back and will be in touch.
Lesley
x
Hi I had bc left side march 06 and immediate recon, have had tattoo & nipple transfer and perservered with pain and lousy lymphoedema. I’ve had nothing but probs with implant, no infections but constant pain, have been sent for physio and told its in my head! Sent to see a physchologist - what an insult and I am so relieved to read all these notes and know its not just me. Thanks everyone and I just hope they will remove it in 12 months as they have mentioned in clinic.
I hope that at the end of this I will be pain free and able to do more, the only worry I’ve got is that people have said that because the muscle has been taken off the chest and the tissue expander placed underneath it, it will never really settle. Would be grateful for any help regarding this.
Thanks
Debs x
I’m not far from Lakeside/Bluewater. Hope you have a great holiday. I’m going away on Monday for a few days. It’ll be a break, at least.
Hi Debs,
I was wondering about that too but am hoping that as my muscles haven’t been expanded very much or for very long that they’ll settle down again. it’s a worry though, isn’t it?
Hi Trudie
Thanks for the support, i was expanded from April - September so I suppose things should revert to normal! Have got a good surgeon so fingers crossed for when the time comes, will let u know if I get any answers in clinic.
Debs x
Hi Debs,
Just hoping to reassure you regarding the muscle query. I had my expanders removed 3 weeks ago (as mentioned previously)- I just want to let you know that everything has been absolutely fine with my muscle (bilateral) . My expanders were in for nearly 3 yrs so I was concerned, like you , what would happen when removed. Everything looks just like before (post mastectomy) and flat, no saggyness at all! My expansion only went up tpo an A cup anyway (that was all I could bear!) . The PS used the old mastectomy scars in the end and they are healing fine. I hope this helps to put your mind at rest.
Hi Lesley, I am from Kent also.
Hi Trudie, Have a good holiday
Anne x
Hi Anne
Thanks for that its reassuring to know that u have been there and are okay with it, I am only a B cup so it shouldn’t be too much of a shock, like you didn’t want to go any further! Still got to wait a while but at least when it happens I will be prepared for it.I will be about three and half years when they get round to it so pretty similar. I know that if my brac 1 & 2 test comes back positive I will have the other breast removed but no reconstruction thanks.
Debs x