Breast Cancer Care Forum

Hi Biker I had breast cancer and a mastectomy of my right breast last year. It was HR poss 8/8. No apparent spread to lymph nodes, so no chemo etc. I've had a really sore aching right leg for a few months, I mentioned it my consultant and he said he thought it was mechanical rather mets but if it persisted he'd send me for a bone scan. I've since had a mamoplasty on my left breast last week and due to see consultant again next week. I still have the pain, my leg feels weak and it's bad when I'm in bed at night as well, so not just when I put weight on it. I know it might be hard to describe, but can you tell me what your leg pain was like and how you managed to get scanned? Thanks Helen 😍 ... View more

Hi. My experience is in Sept 2018 I had a right sided mastectomy with a temporary skin expander implant. It wasn't known if I'd need radiotherapy, but was told it wouldn't affect the implant. It's in a Braxon sling (I think that's what it's called). So when I woke up after surgery I wasn't completely flat.  I then had the expander filled weekly to slowly stretch the skin. I was a D cup.  In August 2019 I had the expander exchanged to a softer more natural silicon implant. The result is pretty good - never the same or as good as my original one of course🤨. I am now completely lobsided as the new boob is rounded and higher than my real one. I was at the hospital on Wednesday to discuss what can be done and I'm now on a waiting list to have a reduction and uplift on my left one. Told it's a 3 month waiting list- but at least I'm on it now and feel like I'm moving forward a bit. Any questions feel free to ask. Good luck. 🍀 💕 😍 ... View more

Hi Nicki - I just finished doing a long reply to you and its disappeared! So I'll try again and hope my original reply doesn't somehow end being posted so you'd have 2 for the price of 1. 🤣 I was diagnosed with IDC and DCIS of my right breast in August 2018 and had a right sided mastectomy at the end of September 2018 with a tissue expander implant. Like you there was a small amount of saline inserted in the expander in theatre. I then had weekly 'fills' of 50cc of saline each appointment for 6 weeks, until it reached the appropriate size. At each fill as the skin was being stretched it did feel sore and uncomfortable for a few days, but I only needed to take a couple of paracetomol, and they did the trick. I had my last 'fill' in November 2018 and then had to wait for 3 months for it all to settle into place and went back in February 2019 to see the consultant, at that point I was put on a waiting list to have the exchange surgery - to get the expander exchanged for a more softer natural silicone implant. I was told it would be 3 months to wait for the op but it ended up 6 months! I was at my wits end by this point as the expander never really felt comfortable, it always felt hard and the port was sticking in me and I was aware of it constantly. I was phoning the hospital every few weeks to see if I was any higher up the list to get the exchange done - but as it wasn't seen as urgent I was told it would be when it would be. It was only after I had a complete melt down on the phone that things got moving and i had the exchange surgery in August last year. I was so relieved to have the expander gone and the new silicone implant is much better, softer and more natural The breast still doesn't look too great in my opinion, as I have a lot of puckering and large dent in it - but its better that still having cancer, so I'm grateful for that. I have an appointment next Wednesday with the cosmetic surgeon to see about having a reduction and uplift of my left breast, which will hopefully give me some symmetry - as I'm VERY lopsided at the moment, he might even be able to do something about the puckering and dentin my 'new' breast if i'm lucky. I also want to eventually have a new nipple created or tattoo'd or something - but I'm taking one step at a time. I'm on letzerole, too, and will be for 5 years (well another 4 years for me now - 1 year down and 4 to go 👍 ) It's perfectly normal to feel sorry for yourself - I still get periods like that now - so if you need to cry or rant - go for it - you're entitled to it I reckon. 😍 I feel like its all taking forever, but I'm getting there. If I can help any further let me know and keep us updated with your progress. Take care and stay strong. Lots of love Helen 💕 ... View more

Hi Marla, I've been thinking of you and wondering how you were doing and came across this thread.  So glad to hear that you've had your surgery and keeping my fingers crossed for your results. 🤞 . When are you back for your results?  🙏 Looked back at some of our posts from last year, how brave you were to make the decisions that you did. All the ups and downs and highs and lows we went through. 🤗 Thinking of you, keep posting to let us know how you are. Love, Helen 💖 💖 💖 ... View more

Hi. I was just wondering if you ever got a date for the surgery on your good breast? I'm still waiting on a date for an appointment to go to the cosmetic clinic to discuss the next steps for my good breast.  Hope you've had your surgery. Xxx ... View more

Hi - I'm glad you're over the operation and can imagine you're feeling in shock. From diagnosis, to treatment plan, to operation - it's all very traumatic, but you'll get there I'm sure. After my mastectomy (in September last year) I felt the implant was very flat - but I think that's because they only put a little bit of saline in it to 'start it off'. I went weekly for a couple of months to have saline added gradually to slowly expand the skin. The implant had a port in it which the nurse doing the fill would locate with a little magnet - then inject the saline it - all completely painless. Once I got to the required size they had to leave it for a few months to settle down, it was nearly 11 months after my mastectomy that I eventually had the temporary implant exchanged for a silicone one. Maybe your's is a different kind if they intend to leave it in? I have read other threads where the implant is left in - there are so many different procedures. Keep your chin up. Love Helen xxx   ... View more

Hi - You're so lucky to have everything 'done' so quickly - there's something to be said for being able to go private - our NHS is wonderful, but underfunded and understaffed so lots and lots of waiting between procedures. I was back to see the consultant last week, she looked at my new boob and said 'Its not great, but its good' - whatever that means. I know its not great, as I do still have the dent/ridge from the original surgery which can be a bit sore. She said she could fill it with some of my fat if it was 'bothering' me. She made me feel like I was being a nuisance. I think she's not that bothered by the cosmetic appearance - she's cut my cancer away and thats that as far as she's concerned. Se also asked if I really wanted to have my left one reduced and lifted - and I said I most certainly did. I'm 63 years old, but I like to think I'm a young 63 - not ready to put on baggy clothes and hide myself away. I'm still working and love my sunny holidays - and I'm very conscious of how wonky I am at the moment. So she say's 'OK, I'll book you in to talk it over again in 6 months time' - well she must of seen the look of horror on my face and said did I want to be seen sooner - again I said I most certainly did. So she said she'd see me in 3 months to talk it over again and if I still wanted it doing I'd be put on yet another waiting list at that stage - I get the impression she really doesn't want to do anything. I'm going to see about going private if I can afford it - it's over a year since I had the mastectomy, didn't need chemo or rads so thought I'd be further along by now. So goodness only knows when I'd ever get to the stage for a new nipple and tattoo.🤦‍ ♀️ Rant over - thanks for listening. Love, Helen. xxx ... View more

Hi - I'm a lot further down the treatment path to you - I had a right mastectomy last September and had a tissue expander implant. It meant that when I came round after surgery I wasn't completely flat as they had put some saline in the implant. I then went every week for about 6 weeks to have the expander filled, gradually expanding the skin to the desired size. I had my last 'fill' in early December and it then had to be left for a few months to make sure the skin remained stretched. I then had to wait quite a long time to have the exchange - 6 months - I eventually had the softer silicone implant inserted just over 6 weeks ago. You might not have to wait that long - I think it varies from hospital to hospital. I had my operation cancelled a few times due to emergencies needing the operating room - I was told the exchange would be done in April but it was actually August in the end - very frustrating. The expander could feel a bit uncomfortable at times and the new softer one is SO much better. I'm now going to have my left breast reduced and lifted - but my appointment to see the cosmetic clinic won't be for 3 months - as the consultant has said she wants to give me a break from hospitals etc and give my new implant a chance to really settle into place. I expect I will then be put on another waiting list to get this cosmetic surgery done, and I think I'll be asking how much it might cost to get it done privately - because i'm fed up of all the waiting in between treatments and I just want it all done so I can put it all behind me. If there's anything specific you'd like to know about the expander implant I'll do my best to answer. Good Luck - keep us updated with how you're getting on. Helen xxx ... View more

Hi Toots, your blog is great. I thought I'll start having a look at it this morning for a bit, then I couldn't stop reading - so about an hour or so later I surfaced. It brought back loads of memories to me - I found myself saying 'That happened to me' and 'That's how I felt at the time' - so thanks for that. I've subscribed so should get any further updates. You're very glamorous by the way. 💄 👠 👗 You ask why I opted for the expander - to be honest I didn't opt for it - it was sort of a fait accompli. In those first few early weeks after being diagnosed everything was a whirlwind of scans, biopsies, MRI's, treatment plans etc etc - I just remember the consultant asking me what size i was - i said 36D - and she said 'an expander would just about make it to that size'. I wasn't told or given other options and I knew so little about it all I just 'went with the flow'. I didn't know there were different types of breast cancer or different treatments or different reconstruction options. I just knew once I was told I had to have a mastectomy that I didn't want to stay flat.  I think now I know so much (from this site and general google) I probably would have preferred the DIEP - things would have moved along a lot quicker I think - I realise now why mine seems to be dragging on - I had 2 months of weekly hospital appointments after the mastectomy having the expander filled, then it had to be left for 3 months to 'settle in', so it was only in February that I was put on the list to have it exchanged (5 months after operation) - then waited another 6 months for a date to have the silcone implant put in - done on 12th August. It was such a long time with the tissue expander in, and it was so hard and uncomfortable - like a bowling ball stuck under my skin. This new impalnt is much more comfortable - not a great shape, still lumpy - but maybe it will get better with time. 🤞 God know's how long I'll have to wait to get the left boob sorted and a nipple reconstruction and tattoo for my new one. The good thing about the expander is that I only have one site of operation - 2 surgeries on my right boob - so one very neat fading line across the middle from the mastectomy and now one under the breast where the exchange was done - your tummy looked very sore from your DIEP. 😪 I'm not sure how you e-mail via this site either - I'll have a look now and try e-mailing you then maybe you can reply? Hope your Dad is OK.🥰 Thanks again, love Helen xxx ... View more

Hi Toots, thanks for this - I've saved your blog page so I can read it 'at leisure'. I'm sure it's OK to post it on here, though, as I'm sure i've seen other references to blogs - but at least I have it now if it does get removed. I seem to be waiting ages in between things getting done I had my mastectomy last September, then a tissue expander, which was at its correct size by November - then had to wait 3 months until the February to be put on the surgeons list - then waited another 6 months for the exchange surgery! I have a follow up appointment on 26th Sept - I'll be asking to have my left b 👀 b reduced and lifted to try and get some symmetry - but god only knows how long I'll have to wait for that as it will be viewed as non urgent and cosmetic. Think I may have see how much it might cost to get it done privately as all the waiting and not knowing is such a strain. I know we can't name hospitals but I'm from Liverpool and under the Aintree one. Just wondering what region you're in? It would be really helpful to see photo's - I think they can be sent in a private e-mail through this site? I have gone on you tube to try and get an idea of what reconstructed nipples might look like - but I quickly came off the site as it seemed to be gorey operations and I'm a wimp. 😜 Thanks so much for all this help, I really appreciate it as I'm hopefully moving into this next stage of my journey. Take Care, Much Love Helen xxx ... View more

Hi Toots,  Poor you - sounds like you've been through the mill. I'd love to read your blog - so if you can give the details of where I can it that would be great. I'm a lot older than you - I'm 63 (but I like to think a 'young' 63) and still care about my appearance, so I was considering having my left boob reduced and lifted. I also wanted a new nipple reconstructing and tattooed. I had a right mastectomy last September with a tissue expander. I had to wait 6 months to get the tissue expander exchanged - had that done last Monday. I've been left with some puckering and a big dent in it - so was considering lipomdelling to sort that out - but I might think again about that! Still want the left one sorted for symmetry. Thanks for sharing this experience - its really helpful. Take care, Helen xxx Helen ... View more

Hi - How's things? I had the exchange surgery last Monday - so I ended up waiting over 6 months for the op! It was such a relief to get rid of the tissue expander - it was so hard and felt and looked like I had a bowling ball stuck under my skin. 🎳 The new silicone implant is smaller and softer and so much more comfortable - sleeping is a lot better as well. I still have the puckering from the original surgery and a dent in it - I go back to see the consultant on 26th Sept - so will see if they think there's anything can be done - but I'm not as bothered about it as I was before - sort of getting used to it all now I think. Still thinking of getting the other one uplifted or something for symmetry, again will see what the consultant says next month. Where are you up to with yours? Hope you're well. Love Helen xxx ... View more

Hi Anne - I had the exchange surgery last Monday and I can't tell you how glad I am to have got rid of the tissue expander. This new implant feels and looks so much better already and I'm getting better sleep as i'm not in as much discomfort. There is still a big dent and some puckering- I go back to see consultant on 26th Sept so will see if they intend to do anything about it. Love Helen xxx ... View more

Hi Toots - just wondering if you decided to go ahead with these procedures and if so how was it. I'll be getting to that stage next, so am wondering about outcomes etc. Love Helen ... View more

Hi All. Can you really believe it was almost 12 months ago that we were all waiting for our September surgeries? Time flies when you're having fun. 😜 It brought it home to me when I got my first yearly appointment for a mammogram on my remaining breast - going this afternoon to have it done. It feels really strange as I've been having mammograms for years and I've always just gone, had it done - no anxieties or worries about the results, but as I'd had a mammogram done 12 months before I noticed the change in my right breast last time I'm wondering if there's been anything 'going on' in my left breast over the last 12 months when we've been concentrating on my right breast so much - will be glad to get it over. On other news, I've now got a date to have my tissue expander replaced - I was originally told it would be done in April and I'd phone every month to see if I was any higher up the list and then it was due to be done on 29th of this month but got cancelled due to 4 emergencies - I had a complete melt down on the phone to the secretary, crying and asking how much would it cost to go private etc. I'd had my pre op done 3 months ago so I'd be ready to 'go' when a slot came free. Anyway, the secretary was lovely and phoned me back to say i'd been re-scheduled for the operation on 12th August and another pre op arranged for 6th August - so fingers crossed it doesn't get cancelled again. 🤞 Hope everyone is doing well, and would love to hear from you all as to how you're all doing. 💖 ... View more

Hi Annie - how did you get on today?  I'm much the same age as you - 63 next month. When I was first diagnosed last August and told I would have to have a mastectomy the surgeon went to great lengths to tell me all they could do for me - reconstruction, new nipple, tattoo on the new nipple, and uplift of my left breast for symmetry. At my last consult in February this year it all seemed a different story - when I mentioned about the up lift of the left breast she looked surprised and said 'do you want that doing?', then said we'd re visit it when my right breast was 'sorted'. I did want the uplift procedure to be honest - but now waiting so long to get the expander exchanged I might change my mind - as all the waiting is so stressful.  Love, Helen. xxx ... View more

Hi Annie, thanks for getting back to me.  I really hope when you go to your appointment this week they can suggest 'something' to fix the wrinkles - I'm pretty sure there will be something that can be done. I can't believe that someone has had to wait 2 years for the exchange of implant - I'll go insane if I have to wait that long - my surgeon had said it would be done in April - but she didn't which year.🤦‍ ♀️ Where are based? Are you thinking of having a nipple reconstructed and anything done with your right breast? I was thinking of having both done but by the time they get round to doing anything I might have given up the will. 🤣 Take care and good luck for Tuesday - let us know how you get on.  Love, Helen. xxx ... View more

Hi - I'm so sorry you're disappointed with the exchange surgery. I wonder if I could 'pick' your brains - I was diagnosed with breast cancer last August and had a right sided mastectomy on 24th September last year and had a temporary skin expander implant inserted. I had to go for regular 'fills' to get it to the right size. I had my last 'fill' in November last year and had to wait 3 months for things to settle down. I went back to see the consultant in February and she put me on her list to have the exchange form the skin expander to a softer more natural silicon implant and was told it would probably be April when this would be done. We're now nearly into July and I'm still waiting on a date for the op. I've phoned a few times but there's always a reason why they can't fit me in! Its driving me crazy as I feel the skin expander is very hard and heavy and there seems to be some swelling over the top of it recently and it's becoming quite painful. I was wondering if this was the treatment you had and if it was how long did you wait for the exchange to be done, and did you have any swelling and pain with the skin expander?  Mine at the moment is hard, lumpy and sore and out of shape - hoping when I do get the exchange it looks and feels better than it is at the moment. Thanks for reading.🥰 Helen ... View more

Hi - hope all is going well for you. I was only in hospital overnight and sent home with 1 drain in - which was managed by visits from a breast care nurse. How many 'fills' have you had done - mine were weekly, but don't know if everywhere does them weekly or fortnightly? I had my pre op assessment and so I'm ready 'to go' once a slot comes available on my surgeons list - hopefully I'll not have to wait too long - as I feel i'm in limbo at the moment waiting for the next stage in this 'journey'. The operation to exchange the implant is not classed as urgent to the professions - but it is to me as I can't wait to get a softer more natural silicone implant in, and to feel like I'm progressing and moving forward. (at a standstill at the moment). Take care. xxx ... View more