Breast Cancer Now Forum

Great to hear all went well and you're feeling positive. Sending best wishes for continued healing and good results.   Hugs Susie x ... View more

Aw, good luck for Saturday, Hope. I'm sure you'll feel better in yourself once it's done - I know I did. Waiting for the surgery was the worst bit for me.   I was told I'd only need one night in hospital but ended up staying for two. I went in at 9am and wasn't back on the ward until nearly 4pm. I was still so groggy the next day and didn't feel confident enough to leave the security blanket of the hospital and the nursing team. Was good to go after two nights though.   Good news that you do pilates and yoga. I found that I used my stomach muscles loads post-op as I needed them to get myself up and out of bed  -  couldn't bear to put any pressure on my arms and shoulders for ages!   Hope it all goes well, sending big hugs x ... View more

HI @Tricia123    I was diagnosed with invasive lobular cancer in February 2020. I was told straight away that due to the size and position of the tumour and the relative size of my boob, I would need a mastectomy. I, too, was put on Letrozole to tide me over as Covid was just ramping up and they were cancelling all non-urgent operations. I was told that, as I was oestrogen positive and could go on Letrozole, I was classed as non urgent - in more normal times I would have had the operation within 4-6 weeks. I had the mastectomy on 24th July!   Like you, the Letrozole reduced my tumour - to the point where I couldn't feel it anymore and neither could my surgeon. I had a few different scans and they decided that I could have a skin and nipple saving mastectomy. If it hadn't been for Covid and the delay in surgery, this probably wouldn't have happened. As I had an immediate implant reconstruction, it really helped emotionally and physically to have one wound site and my own skin and nipple.   At the initial scan in February, they were pretty sure that the cancer hadn't spread to my lymph node and I tried not to worry about the delay potentially changing this. I was very lucky that nothing was found there  -  and I do think that overall and with hindsight Letrozole and the delay really really worked in my favour.   I sincerely hope you have a similar positive outcome although I really do understand how difficult it is to wait and wonder. Susie x   ... View more

Hello Hope I had a mastectomy with immediate implant reconstruction at the end of July. I was lucky that the Letrozole which I'd been taking for 4 months, had worked like magic and reduced the tumour so I could have a nipple and skin sparing operation - so only one wound site. I was also "lucky" that I was diagnosed and treated during Lockdown so my local hospital (which is brilliant) was pushing all operations to a private clinic, where I was the only patient on the ward! I was in surgery for 4 hours and in recovery for 3 hours. I was very groggy for the next 24 hours and the nurses had to help me onto a commode as I couldn't get to the toilet on my own but that was the anaesthetic and I was independently mobile by day 2. The effects of the anaesthetic - tired, a bit out of it - lasted a good couple of weeks but I'm a bit of a sleepyhead anyway and I'm sure everyone's different. The pain wasn't too bad at all, although I do have a high pain threshold. Apparently they packed the wound with lots of antibiotics and painkillers during surgery, then the nurses gave me painkillers every 4 hours - paracetamol and codeine as well as antibiotics. I could have asked for more but didn't need to. I was given a supply to bring home but managed on the paracetamol, gradually reducing them. After 4 weeks, I wasn't taking any at all. The biggest challenge for me was stiffness in my arm and shoulder and the drain which stayed in for at least a week. I also had an alarm system on a plastic tube, going into my dressing which was like a thick bit of clingfilm which seemed to be vacuum packed to my boob. Apparently the alarm goes off if the vacuum seal starts to come undone, although this didn't happen to me. My breast cancer nurse gave me a tote bag to keep the drain and alarm in and I'd say this is really useful - keeps you organised and helps with sleeping. I found sleeping on my back difficult - I usually sleep on the side where I had the surgery and I'm still not back to that yet, although I'm getting there! I was also ordered to wear a compression bra 24/7 for at least 6 weeks. It took me ages to find something suitable - must have tried everything in M&S - and eventually went expensive, although the BCN helpfully gave me a discount code. I also made sure I had a good supply of loose, front-buttoning tops - it would have been almost impossible to pull anything on over my head, with or without help. I was lucky that my mastectomy was on my non-dominant side so I didn't "accidentally" pick up or reach for things with the painful arm. I did the exercises they give you - maybe not as religiously as I should have - and gradually expanded my reach. I did find the shoulder and arm pain difficult to live with and sometimes thought that I'd never feel normal again. I'm now nearly 4 months post surgery and do feel "normal" most of the time. My arm still doesn't go up as high or as straight as the other one but I think that's because I can feel that the scar is still healing. I've learned to trust that it will get there eventually. I drive, work and go about my life quite happily - although not tried a pilates or yoga class just yet, don't think I'll be doing a plank anytime soon! The implant is slightly strange - a lot firmer and smoother than I'd expected - and the lack of sensation is disconcerting but that's a small price to pay. It looks good with or without clothes. Emotionally, I don't feel as though I've lost anything - rather it feels great that the cancer has gone.  If there's anything else you'd like to know, ask away. There are lots of lovely ladies on this forum with lots of different experiences . Sending hugs Susie x ... View more

Hi Linda Sorry to hear you now need another mastectomy and that you're unable to have the type of reconstruction you'd had before and were happy with. It also sounds as though your surgeon isn't being particularly helpful. I had a left mastectomy with implant 10 weeks ago. I wasn't given any other choice of reconstruction due to Covid restrictions and, having waited over four months for my operation during lockdown, I was happy to have anything to be honest. I would have gone flat if need be, just to move on with treatment and get the nasty bits away. I'm really pleased with my implant. I'm fairly small (B cup) but also oldish (62), so slightly droopy - or "teardrop shaped" as they so sweetly put it! The Letrozole I'd been put on during lockdown worked like magic and reduced the tumour to the point where I had a skin and nipple saving mastectomy so that could affect my positive views on the reconstruction. The new boobie looks and feels exactly the same, except firmer and fuller. Looking in the mirror, I have a perfect pair although the reality is my "natural" boob is slightly smaller but that's always been the case for me. The real difference is that the new boob feels nothing like my natural one - no feeling in it at all and very firm. I am, of course, still early days but it does feel as though all the swelling has gone down and I'm fully recovered. Another plus side - only one wound to look after. I don't think they can ever promise an exact match but lots of ladies have a slightly mismatched pair anyway. The (very few) family and friends who have seen me topless are amazed at how natural they look and what a good match. I think there are different types of silicone and slings/matrices to hold them in place so I'm sure your surgeon could find the best option for you.  Good luck with your decision, I'm sure you'll come to the right one for you. The implant, for me, has been good - easier surgery and recovery time and pleased with the results.  Hugs Susie x   ... View more

Hi Cookies4 Bad luck on your diagnosis but great to hear it's treatable and that you're feeling so positive. I had a similar diagnosis (grade 2) in February and felt relieved it wasn't worse. I've been on Letrozole since and will be for 7 years and had a mastectomy with immediate implant reconstruction at the end of July. I have continued to feel grateful for my diagnosis, despite the occasional side effects from the meds and the post-op soreness. You hang on to your glass-half-full approach, it will serve you well before and after treatment. Wishing you well and sending hugs Susie x ... View more

Hi Bookish I had a nipple and skin sparing mastectomy 9 weeks ago with immediate implant reconstruction.  I'm not sure what information you're looking for but please ask away! Although still a bit swollen, I'm really pleased with the results. Apart from my new boob looking decidedly firmer and perkier than the other, it's a really good match and having your own nipple there is like seeing an old friend!  Sending hugs Susie x ... View more

Best of luck to you both for tomorrow's operations. I so understand the feeling of actually looking forward to it - it does seem a strange thing to say and feel but the surgery moves you on in such a big and positive way. The way things are organised across the country seems to vary so much and everyone appears to have a slightly different experience. I feel so lucky that my hospital has a specialist Breast Unit which is headed up by my wonderful surgeon who specialises in cosmetic, oncoplastic and breast reconstructive surgery. I have seen him and my breast cancer nurse at every appointment and I've never seen anyone else, no oncologist or plastics surgeon. It's worked so well for me and they've always been very open, honest and detailed - good and bad.  Louise, you mentioned bras. I'm sure you're sorted now but I've been really around the block with this. I'm a standard 38B M&S. I ended up with 40C compression bras from Amoena - I had a 40C zip up post surgery bra from M&S which felt way too tight on the band post surgery and now are too baggy on the cups. The Amoena bras were beautifully soft and very adjustable as things changed - well worth the investment (my BCN gave me a discount code). I'm now finding my usual 38B bras tight on the band so I've gone for some band expanders - not prepared to invest in any more bras until things have completely settled down. Hope all goes well with your surgeries tomorrow and look forward to hearing from you both when you're feeling up to it.   ... View more

Hi Louise and Nieve I wasn't too anxious as I moved closer to my surgery date. I was told in February that I would be having a mastectomy but was sent home with Letrozole due to Covid - I eventually had my operation on 24th July! So, I was strangely looking forward to it and keen to move on with my treatment.  The biggest difficulty for me was being dropped off at the door by my husband and knowing I wouldn't see him until I was discharged, no visitors allowed at all. I was lucky that my local hospital was pushing these ops out to a private hospital so my experience may have been different to the usual! I had a skin and nipple saving mastectomy and a sentinel lymph node removed. I had one cut along the underside of my boob and they managed to get the lymph node from there as well. I was in surgery for about 4 hours and in recovery for 3, clearly wasn't keen to wake up - by the time I got back to my room, my husband had called around three times! The nurses were absolutely brilliant and kept me well dosed up with painkillers every 4 hours - paracetamol and codeine - as well as antibiotics. Apparently they put loads of anaesthetic into the wound as well before they close it all up. To be honest, I felt very little pain. The main difficulty was moving - very stiff in my shoulder and arm and very woozy from the general anesthetic. I couldn't make it to the loo on my own and the nurses were really kind, helping me onto the commode. It took a while to get used to the drain being permanently attached to you and I also had an alarm system on a plastic tube, going into my dressing which was like a thick bit of clingfilm which seemed to be vacuum packed to my boob. Apparently the alarm goes off if the vacuum seal starts to come undone, though this didn't happen to me. I was also under orders to wear a compression bra, day and night, for 6 weeks which wasn't too bad although a bit restrictive on what you could wear - I wore loose, front buttoned blouses most of the time. I was in for two nights. The first week home was a bit of a blur - very tired and a bit unsteady on my feet. I also had constipation and lost my appetite for a few days. They sent me home with paracetamol, codeine and antibiotics and I was very organised about taking the painkillers, making sure I took them every 4 hours to keep on top of any pain. I only took the paracetamol and I had no breakthrough pain at all, I took the occasional ibuprofen when I felt very achey. Within four weeks I wasn't taking anything other than the occasional ibuprofen. The drain came out after a week which was wonderful and felt like a major step forward. Then the dressing came off, to be replaced by a waterproof tape which I change every week. Amazingly I had no bruising and I have no scar! I think a lot can depend on the quality of the surgeon you get - my breast cancer nurse has said that my surgeon takes a huge pride in his job so I was very lucky. The implant is interesting. It's a great match for my other boob and looking into the mirror, they look like a perfect pair - obviously helped by keeping my own skin and nipple. However, it feels very different - still feels like a bit of an alien sat on my chest and so much firmer and, of course, no feeling or sensation there at all. I do think it's still a bit swollen - my surgeon says it could take months to settle into its final shape and size - and my bra sometimes feels very uncomfortable. I'm 6 weeks post surgery now and feel relatively normal and back to my old self. I am generally very achey but think that's the Letrozole which I'll be on for the next 7 years. My shoulder and upper arm are still quite painful and I can't put my arm straight up above my head but I can blow dry my hair and shower ok - I'm doing the exercises and my reach is slowly getting better but it's taking a while. Overall, the surgery wasn't as scary or as painful as I'd expected and my recovery has been surprisingly quick and easy. I have to remind myself sometimes that I've recently had major surgery.  I hope this is useful for you as you prepare for your own surgeries and I wish you best of luck. Susie x       ... View more

Hello Mrs Kettlebell Sorry you find yourself on here - but glad you've started your journey and have a plan. Always helps! I'm six weeks post surgery (one side mastectomy and immediate reconstruction with implant). I'd agree that core strength is useful - my stomach muscles were very useful sitting up in and getting out of bed when I had drains in and when things were still very tender. I'd also suggest plenty of upper body exercises, particularly shoulders and upper arms as these can get pretty stiff, particularly if you have lymph node removal. Good luck with your chemo, sending hugs Susie x   ... View more

Hi Emma I'm a 36A in one boob and a 36B in the other, always been a bit lop-sided but I am classed as having small boobs - saw it in black & white on a letter from my consultant to my GP!! My larger boob is the problem - had an invasive lobular tumour diagnosed in February this year. I was put on Letrozole (i'm 62 and post-menopausal) and on hold until Covid eased. I was also told straight away and following an MRI scan that I would need a mastectomy on that boob, primarily because the size and irregular shape of the tumour and the need to get clear margins would essentially take the whole of the boob anyway.  I was always keen to have an immediate reconstruction if possible and by the time my follow-up appointment came in June, this was an option. I had looked at the various reconstruction options and decided I wanted an implant because it's a simpler surgery and a faster recovery time. Essentially, though, I would have gone with the recommendation of my surgeon who is, after all, the expert. He was very clear that reconstruction is a journey and there can sometimes be additional, smaller surgeries and interventions to achieve the optimum result. I very much felt that he wants to achieve what is right for me and I definitely think I could have asked for a larger boob and to have the other one matched up later. Like you, I was very lucky that the Letrozole shrank my tumour during the waiting period, or at least changed the shape of it. So, when it came down to finalising the surgery, I was told that I could have a skin-sparing and nipple-sparing mastectomy. This meant one wound which is underneath my (new) boob and they were able to access the sentinel lymph node from there as well. I am 4 weeks post surgery now and I've been told it could take months for swelling/bruising to go down and for me to know the final size of my new boob. However, I've had no bruising at all and, although it does feel swollen, I fit into the same bra as before the op and my boobs are a good match - still lop-sided but I've been like that most of my life. I'm sure I could opt to have an implant in the other one but personally, for me, I don't think I can be bothered. I read somewhere on here that it's a much shorter op to just have an implant in and quicker recovery. I would discuss your options with your surgeon. If part of the reconstruction process is to offer an "evening-up" at a later stage then why not go for the size you want and get some benefit for having to go through this horrible period? A key question during these Covid times would be how long you'd have to wait to be evened up. ... View more

Hi Heather   I so sympathise with your dilemma - I had terrible vaginal itchiness and dryness on Letrozole and it made me so miserable I once wailed to my husband that I'd rather take my chances and come off the meds!   After 7 months, I've gone through most of the Lerozole side effects but they've each lasted only a week and now I feel fine. Around the same time I had the vaginal problems, I also had severe constipation so when that fully resolved itself (so to speak), I was extremely sore down below and very desperate.   Replens didn't really touch the problem, although I'd used it occasionally before breast cancer and found it ok. My breast cancer nurse gave me some samples of lubricants - Sylk and Regelle. I used the Regelle and it worked well, although it could have been all the other things I did as well.   I stopped using toilet paper for two weeks. Even the softest was like sandpaper on my lady bits and on my bottom. I don't have a bidet so I sent for a plastic portable bidet (on Amazon, very cheap) to wash myself down below. Essentially it's a plastic bottle with a lid with an upside down spout; you fill it with warm water and then pop it between your legs and squeeze the bottle. It's actually quite pleasant and worked a treat. I'd then pat myself dry with a very soft flannel. I never washed down below in the shower or with any soap and I didn't have a bath. I also bought a VagiKool which is a "reusable feminine cold pack" recommended by midwives when ladies have stitches or perineum issues after having babies. It's essentially a long ice pack which you pop inside a cotton sleeve and put in your pants (like a sanitary towel). It helps to reduce any swelling and keep the itching at bay. I found it fine around the house but a bit strange when going for a walk. I think I was doing all this for just under two weeks and started to feel much better after about 4 days. I can honestly say I've had no recurrence since and I've been a lot better down below than I had been even before I started on Letrozole.   I hope some of the above helps and hope you're not too squeamish with some of the detail.  Sending hugs x ... View more

Hello ladies Glad to hear you're safely through surgery. Gosh, the pain and bruising afterwards sounds a challenge, hope you're all managing ok and I wish you all speedy recoveries and positive follow-up results. I've had my clinic appointment through at long last so hopefully on 23 June I'll have an idea of when they'll do my mastectomy. I feel so much better, just having a date in the diary! Love to you all Susie x ... View more

Hi everyone So sorry I've not responded for a few days. We've had a surprisingly sociable weekend - at a distance of course - which included seeing our younger daughter in person for the first time in weeks! A real boost. Hope those of you who've had surgery are recovering well and good luck Whitbread for tomorrow (Tuesday). I am still here waiting for any contact from the hospital. I should have an appointment letter any time now to go for the July follow up but I've had no surprise calls to say I'm up for surgery. I am starting to think about just having the mastectomy and worrying about reconstruction later - really so that I can get on with treatment and minimise recovery time. I just want so desperately to get some control back in my life and have an idea of what's ahead - we don't even have the fun of dreaming about post-lockdown holidays or family celebrations as there's always the cloud that I could be pre/post surgery or going through radio/chemo. I'm small boobied - the one that's going is a B cup and the other one is A cup (always been wonky!) - and my low cut tops and breast feeding days are long gone - so it wouldn't be a massive shock to be flat on one side. But I'm worried that I may regret that decision and it seems to be such a long wait for reconstructions at a later date as they're not a medical priority. My husband (who is absolutely fab) is supportive of whatever is right for me and won't be fazed either way but even he is veering towards mastectomy so that we know it's gone and we're moving forward.  It's all so difficult isn't it? Anyway, best wishes to you all.  Susie x ... View more

Hi Kitkat Good to hear that you had the op and all seems to be going well. You certainly sound upbeat 😊 Reading the detail is very useful for those of us still to have their op, even if we're not having the exact same thing done - gives us an idea of what to expect.   Good luck with your recovery and for the results in 13 days. Susie x ... View more

Hi Jen Good to hear you have a surgery date. Hope it all goes well. I've not heard anything yet, I've not even had an appointment date through for breast clinic. My last appointment was 31st March when I was told I'd need a mastectomy but they were postponing for 3 months due to Covid. I've had a couple of conversations with the breast clinic nurse who assured me that all surgery files were reviewed at least once a week and that the Letrozole would be doing its job, keeping everything under control. I've been ok emotionally and patient, but I am starting to feel a bit ignored. I don't feel safe or looked after. I know they're all busy and have a huge backlog but I'm getting desperate to move on and know how my life is going to pan out over the next couple of years.   ... View more

Hi Bonbonboosh I'm in a similar situation to you and share the same worries and concerns.  I am stage 2b - 88mm invasive tumour with some "dodgy" cells around, taking it to 93mm. Thankfully nothing in the lymph nodes that they can see. ER positive, HER2 negative. I've been on Letrozole since the beginning of March and was told on 31 March that I need a mastectomy, one side. Due to Covid, I was given an appointment for early July to discuss surgery and dates. I have called my breast cancer nurse who has confirmed that they are reviewing all surgery cases on a daily basis and that they are getting back to some kind of normal. This is primarily because we have a low infection/death rate in our area and the hospital hasn't been particularly impacted by Covid.  I ideally want an immediate reconstruction so that puts me further down the pile as it's a longer op and would need follow-up appointments and minor surgeries. The nurse did say that I may get a call to go in earlier than July so I am rather hoping this is the case. Letrozole (similar to Tamoxifen) is often given to help reduce tumours prior to surgery so I'm trusting in the medical team that I'm safe to delay and that my dodgy bit is not going to get any worse any time soon. But, like you, I just want to get on and have it done. I want to get some kind of control back into my life and feel that I'm progressing forward, rather than just floating around and waiting for others to decide what I do next.  So, in summary, I feel lucky that my BC is at the lower end of awful and that the prognosis is good; I'm reconciled with having a mastectomy and trust that I'm ok to delay but I just want to have that date in my diary and get on with it!! ... View more

Hi everyone I was diagnosed 3rd March and immediately put on Letrozole. Following an MRI scan, I was told on 31 March that I will be having a mastectomy but on hold because of Covid and my next appointment is early July! The surgeon is confident it's safe to delay as tumour is Stage 2 and I'm tolerating Letrozole well. I've contacted the hospital and they're reviewing the postponed and cancelled surgeries every day and things are starting to move so I'm hoping my surgery will move forward. Strange thing to wish for, isn't it? Ideally I'd like an immediate reconstruction but I'm not sure that's an option in these strange times. I'm putting my trust in the medical team as they know so much more than I do but can't help feeling nervous about the delay. ... View more