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CBreeze
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22-10-2012
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22-09-2013
02:08
Hi I thought I would answer too. So sorry you are facing these difficult decisions. I had a skin sparing bi lateral mastectomy last November. My lymph nodes were clear so my surgeon said I did not need the planned radiation treatment as both breasts had been removed. I had an immediate reconstruction with expander implants which are due to be replaced with silicon ones in November. They look pretty good and I'm told the permanent ones will feel and look better. I think it takes time for most women to get comfortable with their new implants. May be it would help to talk to either your surgeon or breast nurse & Oncologist with regards to ALL your possibilities. I would ask what are the chances of the cancer returning if you have the skin sparing M.If you have the full M.Chic hormone drugs they are planning. How this affects the chances of the C returning. I asked my Oncologist for % difference. For me there was a 3% difference to the projected outcome of the C returning so opted for a skin sparing Bi lateral M. I do not have experience of a full M so can only say that if a skin sparing M gives you the same or similar results in the chances of the C returning I personally would opt for that. However if the margins are very different then for me I would go for what gives you the best outcome. Hope that is of some help. Wishing you strength and good luck. CB
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20-09-2013
12:29
Thanks everyone... I managed to speak with a breast nurse who has booked me an appointment for oct to chat to someone as my PS is on holiday until the end of Oct. Least I should have a better idea then so feeling calmer. Good luck to all 🙂
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19-09-2013
05:50
Hi Sarah I am no expert but did lots of research all the way through my treatment. You could google " Tamoxifen the hidden truth" and read various articles. My Oncologist put it into % so a 2-3 % added risk of it coming back without Tamoxifen seems low. Im not sure what 4/8 means. May be you could ask your GP or Oncologist for the increased % if you stop taking it. It will depend on what type of breast cancer you had, what treatment you had etc. I had a bi lateral mastectomy my lymph nodes were clear. It would be nice if the medical profession was transparent so we could make informed decisions based on truth and not fear. Sorry I can't be any clearer.... Good luck
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19-09-2013
02:12
Hello everyone I asked for % re cancer if I take or do not take Tamoxifen. Mine was a 3% difference and so I stopped taking it as I wasn't tolerating it well. I am very concerned about this drug being pushed.It is one of the highest earning drugs of all time. We are all told that adverse reactions are rare.. We are testament to the fact that that is not true. Unfortunately the pharmaceutical industry is way too powerful and so often only has profit in mind over the truth. Dr's are encouraged to prescribe certain drugs etc etc etc...So BEAWARE do as much research as you can and try to get your oncologist to level with you. We all have different cancers, triggers etc so I can not say for others. Good luck
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19-09-2013
01:59
hi Ask your Oncologist what the % are re cancer returning if you take Tamoxifen or not. For me there was a 3% difference so stopped taking it as I wasnt getting on with it very well. Good luck
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19-09-2013
01:56
After my bi lateral mastectomy I was put on Tamoxifen but the side affects were unbearable. I asked my Oncologist about % of cancer returning with or without Tamoxifen. For me there is a 2-3 % difference. I concluded that taking tamoxifen given it only changed things by 2-3% wasn't worth all the side affects. May be ask your Oncologist the same question and decide from there. Good luck
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18-09-2013
02:02
Hello to the moderater i have been trying to call to talk to someone there on the 0808 800 6000 number but it has been saying since Monday that this number is not available. could you please send me a contact number. Thank you CB
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15-09-2013
05:16
Despite being in ridiculous pain weeks after surgery it still took 6 weeks to see my P S. I complained about the lack of follow up after such a major operation. A bi lateral mastectomy with expander implants. It then took another 3 months to get another appointment with him. This was to fill my implants. As mentioned b4 They could only inflate one side as the other port was back to front. So I asked to have the port turned. I was told that they would replace the implants to Silicon. It is now 10 since surgery. I have had 1 breast inflated once. I have asked and asked to see the PS. I Have asked and asked when my operation will be. I am just told I am on the list. Having written to PALS to the Surgeons to appointments the PS physiotherapist I was offered an operation next week, giving me 6 days notice without seeing the surgeon to discuss the size, shape etc. I refused the operation and insisted on seeing the surgeon. Who I will finally see first week of Novo. I have got appointments to pencil in an operation for the following week. I am sooooo distressed by all this messing around, lack of follow up appointments. Treatment plan out the window. In 10 months only one breast has been inflated and so I don't even know if they can continue to the next operation without doing the inflation first. My Breast nurse is of no help with any of this and so I feel like I'm going round in circles. Can anyone advise me what I can do to get some clarity. Thanks CB
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14-09-2013
11:54
Hi Zuleika Yes its a difficult choice. I asked to remain the same size as I felt my breasts were in proportion to my body. There are many factors that affect the out come. I have a very low fat index and my skin is quite thin. Not being too large breast size helps apparently. My implants looked great at first but as months have gone by I have had all sorts of problems. 1 being they can't inflate them as the ports are facing inwards. They pull so you can see all the outline & they ripple. They feel more normal as they are mobile due to not being fully inflated. If I had the choice I would have them inflated, if they looked OK have the ports out. Then if they weren't Ok Id go for the Silicon. Unfortunately that choice isn't available. I don't know how other people find their breast nurse. Mine is of little help always too busy to answer the phone. I wait days for her to call me back, if at all. Then she seems to forget to check what Im asking or gives me the wrong information. I have spoken to 2 other breast nurses at different hospitals re procedure. I feel I should be able to discuss my next operation with my PS and have a clear plan BEFORE my next surgery, but again I am left out here trying to piece it all together. Spending hours researching etc. Good luck with the rest of your treatment and the settling in process..Its always good to hear the success stories 🙂 Thank you for responding CB
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13-09-2013
10:00
Hi Roxygirl Sorry to hear your story, sending hugs.... I had a bi lateral mastectomy last Nov and also had days when I wasn't holding up too well. I think this is quite a normal response to our lives being tested in this way, so many mixed emotions. After Surgery I had a succession of other challenging events on top of dealing with surgery and cancer and eventually could not stop crying either. I am also a strong and cheerful person normally. My GP prescribed Serialize ( a serotonin re up taker ) I had never taken anti depressants in my life so was reluctant. However they were invaluable in helping me cope. It may be worth chatting with your GP for advice. I hope you find a peaceful place within yourself very very soon. Every time I used to feel anxious or too many thoughts whirling around I would try and watch my breath breathing in deeply then controlling my out breath again breathing slowly.... It really helped to calm me. Every time my mind wondered I would watch my breath. I had never meditated before as I could never get myself to put the time aside. This was different as I could do it where ever I was. Sending lots of healing calmness..Everything will be alright. CB
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13-09-2013
09:26
Thanks Jojo Your message is really reassuring. I have been getting anxious as time passes as I have heard so many horror stories. I find the Saline heavy so was hoping the Silicone ones would feel better. Do you know what type of shape you had as I know there is a tear drop type and a rounded type..I'm still debating. Thank you once again
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13-09-2013
09:20
Hi...Ive had my expanders in nearly a year. I have pushed to get the permanent one done. Which will be in Nov. I think it depends on the hospital and how busy are. But a year seems to be normal. CB
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13-09-2013
05:46
Had a bi lateral mastectomy a year ago, with immediate reconstruction using expanders & the strattice technic. As my ports are in back to front I now 2 deflated droppy implants 😞 I can not get any clear information from the hospital who just send me round in circles. I was finally offered an operation date without seeing the plastic surgeon first. So I refused saying I want to discuss all my options re, size, shape and general information. Isn't this standard ?? The first appointment I can get with the P Surgeon is November so have booked my own operation for the week after. Which again seems wrong !!! Meanwhile I want to do my research so that I make sure that I discuss the correct treatment, breast size & shape. I asked to remain the same size 34B however my implants are more like a 34C. ( not a major proplem ) I am slim and do not have extra body fat for reconstruction so have to go for Saline or Silicon. Can ANYONE ADVISE me who has had a single or bi lateral mastectomy using saline or silicon implants that is happy with their results. I would like them to look and feel as realistic as possible and have heard all sorts of horror stories. My expanders have given me all sorts of problems, they are extremely uncomfortable especially the left one, everything pulls and sags 😞 Thank you
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13-09-2013
05:09
This is a interesting question. My experience with the NHS has been awlful !!! So assume Private treatment could only be better. I think it depends where you live and which hospital is treating you. I have talked with several women treated in different NHS hospitals and we all felt that there is plenty of room for improvement. A year on I am still waiting for my expanders to be replaced. I have only managed to see my plastic surgeon twice since the bi lateral mastectomy, which I think is very wrong.
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13-09-2013
04:43
I had a bi lateral mastectomy with immediate reconstruction using strattice last Nov. Nearly a year on I am still in great discomfort on the left side which pulls, throbs and feels lumpy. The right side has finally settled down. I am shocked at how difficult it is to see my plastic surgeon. I have seen him twice since the operation despite wanting to be checked properly and for the problem to be resolved. I still have the tubes and ports in..which are in the wrong way round so are of no use yet they still wont remove them. Strattice has not been used very much in the UK and so I am guessing that there is lack of experience here where as it has been used for years in the USA. It is known that if you have radiation after surgery it affects the implants, they usually harden. My surgeon tells me that they are working on a new type of radiation that is a one off treatment at the time of the op. Before the implants are put in. I think what we all need is more TRANSPARENCY with the treatments, results and things that can go wrong.
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13-09-2013
04:19
Hi Anne I had a terrible time on tamoxifen so asked to see my oncologist. I asked her what were my % of getting cancer again if 1. I take tamoxifen or 2. I dont. I was told for me there was a 2-3% difference and so I decided to stop taking it. May be ask your oncologist for % too Hope that helps. 🙂 Clare
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24-10-2012
12:14
Thank you everyone who has responded to my question. I have had an amazing response also from other avenues. I now feel much more positive and a clear picture is appearing for me. Hopefully on Thursday, when I see my surgeon, I can ask him what is possible with regards to changing my plastic surgeon....phew !!! XX
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22-10-2012
10:59
Hello.. sorry for my delayed response. I live in North West London. I am prepared to travel if need be. It seems from my visit to The hospital that it is some what difficult transferring to another. how ever i still want to make sure that I am confident about the person working on me.... thank you for advice so far. would be great to hear from other women who have had the same procedure and were happy with their surgeons.
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22-10-2012
09:06
Hello All,
This is my first post.
6 weeks ago I was diagniosed with insitu ductal invasive carcinoma. 3 weeks later I was futher diagnosed with non-invasive DCIS in both breasts.
As a result I am due to have a bi-lateral masectomy with immediate reconstruction. As I'm very slight I have been told that I will have to use implants.
I went to see my (NHS) alloted plastic surgeon a week ago and was left feeling utterly distraught with the quality of his previous work. I thought it was unexceptable and certainly not what I was expecting to see.
So I am now in a desperate rush to find a plastic surgeon whose previous results have been good and whose patients are happy with the result of their work.
I would dearly love to hear from anyone who has had bi-lateral reconstructive surgery using implants and would recommend their plastic surgeon.
Thank you in advance for your replies.
Clare.
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