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Hi everyone... this is my first post please take a look at my profile to gain an understanding of my situation (sorry it’s so long - I can’t do succinct! ) if anybody has any experience to share of lumpectomy/oncoplasty I’d be interested to hear from them... many thanks
Hi Nanny Dooie I had a similar op in May this year. As I have Poland’s syndrome on my right side my right boob has always been considerably smaller than my left. So as my cancer was in my left we ( my surgeon and i) took the opportunity to reshape and level my boobs out!
The op was longer than anticipated & I ended up staying in overnight but I really am thrilled with the result, I can see that in time the scars will be barely there. It’s been uncomfortable occasionally as it heals inside, but it’s definitely lessening. I start radiotherapy soon and I’m told that there will be a minimal effect - I’ll let you know!
Hi ruthie2, thank you for your reply... Wow! I couldn’t have hoped for a better response really! Look forward to hearing back during/after your radiotherapy; hope it all goes smoothly for you :-)
Hi Nanny Dooie, Just been reading your profile and some areas are similar to my own. Although I cannot comment on an experience of lumpectomy at this time as I haven't actually gone through it yet! but I do have a decision to make in the very near future. If you read my profile you will see that I also found a lump myself and since then have had many mammograms, ultrasounds and biopsy at two hospitals and still have an MRI to go through! No-one seems to agree whether there is just the one lump or others which doesn't help when it is supposed to assist me to make an informed decision regarding lumpectomy or mastectomy. I'll keep you posted and up-date my profile if you want to chat.
Take care x
Hi Penny Whistle, thank you for your reply... it’s so tricky isn’t it! I must admit I was taken aback after my second consultant appointment because I was lead to believe that the second lot of tests would either confirm their original findings or deem things to be worse than they initially thought... then I was under the impression a decision would be made about surgery & a date booked... I left that consultation feeling more confused than before I went in! The fact that there’s still an area that is inconclusive I wasn’t prepared for! The fact that they’re intending to remove both areas plus the area between which is bigger than the area on the other side that I went for I wasn’t prepared for! The fact that I now have to have a liver biopsy I wasn’t prepared for! And the fact that I still don’t have a date for surgery I wasn’t prepared for! However... I have tried to reason it through... the inconclusive area... at least they have picked up on it & are dealing with it & time will tell whether anything more extensive needs to be done once they have removed & tested it... the liver... at least they are checking it... feeling very anxious about the actual MRI for that atm as really didn’t like the one I had fifteen years ago so haven’t really focussed on the fact that it might show something nasty lol! I will deal with that if & when it happens! Gotta get through the MRI first! The date for surgery... I will know that in due course... I am thankful they are being thorough. I said from day one that if I’m advised I need a mastectomy then obviously I would have one but if I don’t need a mastectomy then I’d prefer not to. At this point in time the consultant doesn’t think it’s necessary but he can’t rule it out in the long term... so that’s one decision made - for now. No mastectomy at this present time. Lumpectomy versus lumpectomy with oncoplasty - I think I’m leaning towards the oncoplasty option especially after ruthie2’s reply with such a positive slant on it... I was already thinking I’d probably go down that route but wasn’t quite sure... I think I’ve come to accept that the fact is they can’t be all knowing so there are going to be unknown’s when it comes to decision making... but I’m trying to apply some logic... looking at the facts that I know so far, asking myself what I’d be happy with & then deciding whether I will be comfortable with the decision I make... eg not mastectomy because it hasn’t been deemed necessary, not lumpectomy because I feel that I’d find it difficult to be left misshapen in different areas on both sides... which leaves oncoplasty which should leave me with a relatively good overall result... if at a later date post surgery it is deemed necessary to have a mastectomy then I will have to get my head round that - bottom line is I’m not ready to risk my life so if I have to have a mastectomy to prolong my life then so be it... if I can avoid it for now then all well & good... & that takes me back to - it is what it is... I can’t change it... so, one day at a time... there is a bigger picture... we may not be able to see the whole picture right now but it’s all in hand... look forward to seeing what happens next for you Penny Whistle & how our journeys compare... will be thinking of you :-) I hope my ramblings help you even if it’s only in a small way... we all need all the help & encouragement we can get at such times... you are not alone... praying that as things progress they will become clearer & you will feel confident to make the decisions you need to :-)
Hi again Nanny Doole, Its all very confusing and we do seem to be having the same emotional experiences as I guess everyone else is too! My decision keeps changing by the day and every time I have another test. Today its been changing by the hour.
I hope you don't have to make additional decisions when you have the liver biopsy and it all turns out OK. I am having trouble coping with the breast so I would be in a right state if they found anything else.
Good luck with all your tests and decisions. I will let you know mine after all the tests and the next appointment with the consultant.
Take care xxx
Hi again, just thought I’d check in as I haven’t been on in a while! Liver MRI was ok (phew!) & I had lumpectomy/oncoplasty on both sides 05.12.19. I had a lot of side effects from the drugs & didn’t have a very smooth run unfortunately. Long story short is I’m due to go back next Tuesday as the clear margin on the right was 0.6mm & the surgeon wants it to be 1.0mm clear. The oncoplasty results are mixed... the right side still looks like ‘me’ but with scars which I can see in time will be ok to live with - however I don’t know what effect the surgery next week will have... time will tell. The left side is not so good. He had to take more tissue than he had originally anticipated & had to go quite far under the nipple which has left me quite misshapen along with what I can only describe with the scar from underneath up to the nipple as being effectively too tight for the amount of tissue underneath so it dips in the whole length making me bulge in the inner side. Overall not so cosmetically pleasing as I was hoping for. The positive is that the margins on the left were clear so he doesn’t need to do anything more drastic on that side thankfully! Also, the lymph nodes on the right were clear so nothing more needs to be done there either. Don’t get me wrong, I appreciate the fact that being rid of the cancer is the most important thing but it’s just that opting for the oncoplasty was a big decision & I guess I’d hoped that the results on both sides would be more like the right side. I also try to reason it through that had I not had the oncoplasty I guess I would be a whole lot more misshapen than I am with the oncoplasty. Unfortunately it does mean I definitely don’t have a matching pair any more! Even to the point that the right appears bigger & the nipple lower than the left so really quite odd all in all! I was under the impression that oncoplasty would give me the best shot at being perhaps smaller but more matching than I actually am! I mean size wise I don’t appear to be that different when wearing my bra & I’m still wearing the bra size I was before surgery, but shape wise I’m very different than I was on the left. I’m also still experiencing quite a lot of pain, more so I’m the right than the left although both hurt a fair bit still at different times. I’ve tried different bras but I end up in pain after a while no matter which one I try. Without a bra I seem to have less pain but the right side in particular is too sensitive to go without a bra as even just a tshirt touching it is very uncomfortable to the point of being painful. My stitches although dissolvable are still very much there & the glue is only just beginning to wear off. Not really sure how long any of that should take! I’ve also had a lot of trouble with the lymph node scar which is still not healed; it’s marginally better but still has a way to go yet which is frustrating!
Penny Whistle what’s happened with you since you last posted on here?
Hi Nanny Dooie,
Is nit sure why the numbers have appeared
Hi Jojodot, I’m with you - it’s far from easy! Your situation sounds more complicated than mine from the point of view that I was told from the beginning that I didn’t need a mastectomy (although I was also told I could choose that option if I decided I’d be happier with that) & that remained the case. I, like you, had decided I’d prefer not to have a mastectomy unless I had to but would accept it if it became necessary. Thankfully, at this stage that hasn’t been necessary... although my surgeon has been clear from the outset that they can only advise me according to what they know at that moment in time & that at any point it might become necessary to have a mastectomy if what they find determines that to be the case... it’s a hard one to get your head around! My surgeon is an oncoplastic surgeon though so obviously if he can do the oncoplasty/mammoplasty (apparently they are interchangeable terms - which can all get rather confusing!) that would be his preference; I asked him if I could ask his opinion on lumpectomy versus lumpectomy with oncoplasty & his response was “No, I’m an oncoplastic surgeon, of course I would say oncoplasty! (At which point he laughed!) BUT the decision has to be right for you!” So whereas I’ve been reading some people have a surgeon to remove the cancer & then a plastic surgeon working alongside to do the mammoplasty, mine does it all. I returned one week after surgery as I was experiencing more pain in the right side than I had been & the lymph node wound was very sore because it was catching on the edge of my bra which had worn the glue away so the wound at that end was a bit exposed. There was some debate as to whether it was infected & my GP decided to give me antibiotics; I was then having it dressed by the nurse who did a swab but that came back clear; it’s still not healed but has improved a little over the last few days thankfully! My pain has also eased over the past few days as well so I’m getting there. I was due to go back two weeks after surgery but when I went back after the first week he said that the preliminary report was suggestive of probably needing to do more on the left which could have compromised the nipple & been a lot more extensive but that the right was looking as though nothing more would need to be done & the lymph nodes were also looking ok... fast forward to the two week appointment & the full report deemed the margins in all the DCIS on the left were all clear so nothing more needed to be done on that side but the right needed a fraction more taken away to gain a clear margin - his aim was 1.00mm clear & mine was 0.6mm clear! We’re not exactly talking mega amounts! So, from the point of view that the left could have been a lot worse & has turned out it can be left as it is, having to go back for a small amount to be done to the right feels like quite a bonus really! My biggest concern rather than the actual surgery are all the side effects They try different combinations of drugs for the anaesthetic but I’m always really, really sick! I ended up staying in two nights when at one stage they were saying I’d probably go home the same day! They also had to catheterise me which again is apparently unusual for the type of surgery I was having! Plus, I had the surgery on the Thursday & woke the following Monday morning with an intensely burning/itching rash from my chin to my ears & down to the upper part of my chest which they are saying they believe was a delayed reaction to all the drugs! It took a week on prescription strength antihistamines & hydrocortisone cream for it to subside!So difficult when you feel things are rushed & you need time to process what you’re being told. I was wearing a 34F before although I had recently lost a bit of weight (on purpose) so I was between an E & an F & the bras I was wearing before surgery still fit me - in fact it probably fits a bit better lol as there’s a bit of ‘lift’ that’s taken place with the surgery (although more lift on the left than the right!) but from what I’ve read the amount removed is minimal compared to the amount some people have had taken away. Mine was 80g DCIS on left & 74g invasive ductal cancer on the right - although obviously that will change after tomorrow’s second attempt to get clear margins. Both were hormone positive & HER2 negative. Thank you Jojodot, I will update when I’m up to it. Let me know how you get on after Thursdays meeting & I hope it becomes clearer which decision is going to be best for you. Best wishes, Nanny Dooie
Hello Nanny Dooie
Thanks for your reply. I just felt when I found your post that you had gone through the same thoughts and emotions that I am having now. I am trying to keep an open mind till after the Thursday meeting. My surgeon is also an oncoplasty surgeon too so she is able to do it herself. And that’s why if she is not confident I am not confident !! Thanks for confirming oncoplasty and mammoplasty is the same thing as I wasn’t too sure. Its interesting to read your story and thanks for sharing.
All good wishes for tomorrow and hope it is straightforward and that they tweak the anaesthetic so you feel better this time. One of the reasons I may end up with a mastectomy is the thought that one surgery is bad enough whereas to go back again you must be very brave. Will be thinking of you.
Jojodot it certainly does sound as though we’ve been through very similar thought processes... it was only after the first surgery results & the news that I needed to have further surgery that it dawned on me that the second lot would need to be tested & if not clear it would mean going back again repeatedly until the margins are clear... I think once you come to an acceptance that even the surgeons have to wait for the results to know what needs to happen next it becomes easier to understand the process of taking one step at a time & the possibility of returning until the desired outcome is reached... all a bit of a steep learning curve! Keeping an open mind is good. Maybe clarify what she isn’t confident about... if you’re saying you’d be happy to be smaller but retain shape it might be that she is thinking the size difference she has in mind would be too great but actually you’d be ok with it... if that’s the case maybe the oncoplasty would still be an option but if it’s a question of she really wouldn’t have enough left to work with & you trust her judgement as the expert in that field then perhaps the mastectomy is the way forward... it’s certainly a tricky one... I have to say when I’m dressed you really wouldn’t know I’d had anything done. Undressed is quite a different thing! I mean, I’m getting used to them now but my left side definitely resembles the face of a cabbage patch doll lol! It made me quite sad initially but as time has passed I appreciate that being rid of the cancer is paramount & if I’m left with a cabbage patch dolls face for a boob then so be it! I guess you just need to be realistic about what is on offer & the fact that you might not just be smaller but also quite misshapen like me & consider the reality of that... if the overall aim is to look ok when you’re dressed & she thinks the oncoplasty could give you an acceptable shape/size that you’d find acceptable then perhaps that’s worth considering... just keep at the forefront of your mind that ridding yourself of the cancer has to be the priority... anything else is a bonus! Says she who hasn’t had to have a mastectomy! Don’t get me wrong... I understand it’s really not easy... but I just want to encourage you to focus on the most important things first... I always said if having a mastectomy was necessary from the point of view of being as certain as possible that it wouldn’t return or spread further then I’d have it but if I didn’t have to then I’d rather not... it’s about getting things into perspective! And returning for surgery, doing one step at a time, isn’t so bad... I’d rather that than find out some was missed & a little way down the line things were worse because not enough was done soon enough... it’s all relative! I’m not really brave, I guess I’m just being realistic & accepting that I’m in the midst of this & the best way I can deal with it is to literally take one day at a time... & not obsess on things I can do nothing about & rest in the knowledge that the surgeon wants what is best for my long term longevity... as does yours
Thank you for your good wishes. It would be amazing if they could manage an anaesthetic that didn’t make me so poorly but even if it does it will be a pain to have to live through it but in the scheme of things it will soon be over so I’m trying to focus beyond all of that & to coming out the other side! Speak to you soon, I really should get some sleep! Nanny Dooie x
Hi Nanny Dooley, sorry I haven't been on here in a while since my op, but to up-date you I had a mastectomy and haven't been dealing with the aftermath very well! It was only decided as I was in the anaesthetic room about to be wheeled into theatre! I had signed a consent form during the weeks previous but my consultant said I could change my mind right up to the last minute. A member of the surgical team didn't agree and said I had given consent for a mastectomy, that's what I was going in for! I think I must have been a right pain! I'm not angry or anything as I could not make my mind up so just went with the flow on the day! bye the way I'm not recommending this to others as a way of making a decision! I'm 65 yrs old and have lost quite a bit of weight over the last year and my bobs weren't that big to start chopping away with a lumpectomy, especially If they would have had to take more wit additional surgery to get clear margins. I also had the sentinel node biopsy/removal which is more painful after than Imagined! sorry i'm going to have to finish this on the laptop later, tablet playing up!
Hi again Nanny Doole, Sorry to cut my reply short before .... I think if I was younger and had larger boobs I would have gone for the lumpectomy, but I didn't want the weeks of radiotherapy that would have been necessary or the risk of further surgery. I was warned that going with this choice I could lose up to 75% of my breast anyway with the lymph node removal as well. The surgery was 3rd December and I am still in pain and a lot of discomfort. My incision is right across the centre and incorporates the lymph nodes, I have a Seroma which has been drained once but they don't like doing this again due to the risk of infection and so I have different areas that included numbness, swollen/hard areas, a tight guitar string under my armpit which I am assuming is chording but don't know? My scar is very tight and feels like barbed wire sometimes. My movement is restricted as my shoulder and forearm keep giving me grief. I have an appointment with physio in the next week or so that will hopefully help with this ... but in the meantime I am having a moan!
I have struggled with bras like you and I have now thrown all my others away as I don't need the reminder and have gone for front fastening soft sports bras with the removable pads. I have had real difficulty in getting these but the ones I now have are from Sainsbury's at £9.00 each (not sure if I should mention store names on here?) nothing fancy but they zip up the front and work for me. Consultant team are still making their mind up whether or not I would benefit from Chemo, but I won't agree to this if it is not absolutely necessary!
Anyway that is the latest of where I am and what has happened since I last posted.
You are one brave lady to go through the treatment you are having, so please accept my good wishes and lets hope everything comes OK for all of us (glad the liver result was good x)
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