I had a elective double mastectomy in November. Apparently if the nipple is saved it increases the risk of infection and the cancer returning as it will have breast tissue x
I came to wish you all a Happy New Year, that 2020 be better than 2019,w a lot of health. I also would like to thank you all for the support you have me when I most needed it.
I am looking forward too hearing from you all, hoping you are fine and have finish your treatment.
This thread has been closed by the website, so I would be happy to receive news from you on private.
What great news Helen! I'm very happy that you and your husband are enjoying life even more now and not postponing your plans anymore. I wish you a very good trip. Hope you enjoy Belgium 😃
My family loved England. They liked how polite English people are and the beautiful countryside. They also enjoyed a lot the 'refresh' of English weather as it's hot all year round in our city. My mum said that now she's melting under the sun😌
Take care ❤️
Hi Carol - sounds like you had a great time with your family - what did they think of the UK?
I'm glad your husband is looking after you well - sometimes I think dealing with adversity as a couple can bring you closer together, which it seems has been the case for you - definitely get that expensive present sorted.😉
It's good that your English is improving - and that will only continue - your written English is excellent.👍
I'm still waiting on a date for my exchange of implant operation. I think it is not classed as urgent, so I am on the surgeons 'list' - she did say she thought it would be around April sometime.
If this whole experience has taught me anything it is to live each day as fully as I can, and not to put off things I want to do, we've been on loads of 'little' holidays seeing places we always said we'd go to and kept putting off and tomorrow my husband and I are off to Belgium for a break - 2 days in Gent and 2 days in Brugges. I've never been to Belgium but my husband has and loves it and has been saying for years we must go - so now we are going.✈
And remember - when its raining look for rainbows and when its dark look for stars.✨
Keep in touch, Love, Helen. xxx
Carol, I’m really glad to hear that you are focussing on the good things in life and those that have come about since all this. That’s so positive. I hope you get your expensive jewellery 🤣. Your English looks great to me, I don’t think you should ever worry about speaking to health professionals or if you decided on a counsellor.
HelenAnn - I wanted to say what a great post of yours. The points you made are so so true and ones we should all try to remember. I’m going to see if I can save that message.
Hugs to all.
Thank you very much for your tip. My BCN told me to by QV cleanser and moisturizer. I'll buy the smallest bottles instead of the big ones she prescribed to see if I get on well with them. If not, I'll ask her about the ones you mentioned.
You're probably right. We sometimes may feel symptoms only because we read about them... Thanks for your words my dear.
Looking for the good side of the whole situation I got two amazing things: My family visited me for the first time since I moved to here and I didn't have time to be sad while they were here, so we travelled around England as it was just a family holiday. My husband has showed much more worried about me than I expected and he's been doing anything he can to cheer me up( I think I'll ask him for any very expensive gift to make me happy again😂. I'm joking). I can say our marriage is stronger now than it was some months ago.
Well, three good things if I count on it the little improvement on my English as now I can't be shy since I need to talk to hospital staff frequently 😂
I'm happy you're getting on well with letrozole. Did you get a date for your next surgery?
Take care and enjoy the Sunday,
Hi Carol - I've been prescribed Letrozole as i'm post menopausal - I was really worried about starting the hormone treatment as well, especially when it was discovered I had osteoporosis of the spine and I know Letrozole can make it worse - so I feel like I'm now on cocktail of different 'drugs' to counteract the Letrozole effects. Like you, before I was diagnosed with IDC in August I was a picture of health - hardly had a day off work sick etc etc and sometimes it gets to me. So, I've been on the hormone therapy for 5 months now - at first I didn't feel too good on it - I think it was because I'd read lots about the side effects and read the leaflet that comes with it and I'm sure now that I was imagining some of the symptoms, as I'm fine most of the time now - either my body has adjusted to the drug or I was imagining things (probably a bit of both🤣). If you read the leaflet that comes with a packet of paracetomol and the possible side effects you'd never take a pill for a headache.
I think you need to keep that word in your mind - POSSIBLE side effects. You might not suffer any or very few or mild - fingers crossed🤞.
My consultant said the benefits of taking the Letrozole far outwiegh any side effects so I should give them a 'good go'. So i'm sure its the same for you with the Tamoxifen.
You can do this - you've come such a long way in your journey already and hopefully you're on the 'home straight' once you get the radiotherapy done. Believe in yourself. You're stronger than you think💪, and great news that you're not having chemo. They say the greatest healing therapy is friendship and love - and you have that with your lovely husband, family (even though they're far away) and your close friends and all us - your friends on this forum
You will have 'down' days but try to keep smiling, take one day at a time and look for the rainbow after the storm🌈- then you will get your life back.
Keep in touch
Thank you for your kind message. I’m glad to hear that I have given you some reassurance about Tamoxifen and also that you feel less down today. I hope that continues. I have been on Tamoxifen for about 18 months now. I believe any side effects are felt within the first few months if you are going to get them - so be open minded, and do speak to your GP or consultant if you think Tamoxifen is the problem.
Good news that you have avoided chemo, I had that plus radio, mastectomy and node clearance. I wish you all the best for radio - I’m sure you have had many tips already, but I’ll just recommend that you drink lots of water, and moisturise well and keep going for a good few weeks after it ends. See if you can get hold of R1 and R2 cream - many GPs and doctors haven’t come across it, but I read about it on here and my GP prescribed it. They are moisturisers - google them. Or Aloe Vera gel from Holland and Barrett was also good. It will be tiring having to go every day, so see if you can get someone to drive you if it’s a way away.
Hope you too have a good weekend.
Hope you're doing as well as possible with chemo. Are you feeling ok?
I'll let you know how I'm getting on with Tamoxifen in a few weeks or days as I have started it only three days ago. But Evie said she is getting on with it, so we can have hope we will be the same 😉
Hugs and have a nice weekend.
It's so good to know that someone is getting on with Tamoxifen! It seemed like anybody could do it.
My husband says the same to me ''just live day by day". I'm feeling less down today I don't know exactly why, but I'm glad for that for sure.
No need to apologise. I also don't remember what everyone have said in here since I started this thread months ago. Last week I refused chemo as I am borderline and my consultant is happy with my decision. Yesterday I had a scan to start radiotherapy in a few weeks.
I thought about seeing a counselor, but I can't imagine having therapy in English. Although, I had a look on the apps you mentioned and I liked them, so I'll give them a try.
Thanks again Evie, read your message yesterday made feel better and reassured about tamoxifen.
Is everything ok with you?
Wish you a great weekend.
Hi Carol Lina
I have just read your post and wanted to reassure you that I don’t seem to have any side effects from Tamoxifen. I always have the same brand, Teva, as I didn’t get on with the first brand they gave me. Reading other chats on here it seems that different manufacturers use different “fillers”, although the main drug itself is the same, and as a result some people don’t get on with every brand. Though I do know people who have no problems with any brand, we are all individuals and react differently with drugs. Maybe try a different brand?
Like you I was very nervous about taking them, so I do know how you feel. Try not to feel like you are poisoning yourself, but instead that you are doing the very best you can to prevent a recurrence. My menopause was started by chemo and I actually feel less emotional now than I did when I was having periods and terrible PMT and mood swings.
What stage of treatment are you at? If you have just finished it is very common to feel lost and down/depressed as all of a sudden you don’t have appointments and doctors to reassure you. If you are still having treatment then again it’s not surprising that your emotions are all over the place. This is a very good place to chat, but maybe you could find a counsellor? Or speak to your BCN? Sorry, I think this thread has been going on for a while but I haven’t followed all of it so apologies for asking you to repeat your stage of treatment.
Have you tried some mindfulness apps? Headspace or Calm? They might help you to try to take one day at a time and not let your mind rush ahead to what might never happen.
Hugs, Evie xx
Hi Carol lina
I had a skin sparing mastectomy 13th November and lymph node clearance 13th December started chemo 4th feb 2nd chemo was 25th February having Fec-T with herceptin and then tablets for 10 years apparently, I'd be interested in how your doing hunny xx
Is anyone on tamoxifen or another hormone therapy? Do you feel well on it? Did you have early menopause because of this?
I started on tamoxifen two days ago and I've been so scared of it. I feel like I'm poisoning myself. To add to my worries my glucose blood level has been sometimes high, sometimes borderline. I don't think it's diabetes because it doesn't increase, but lower by itself, although I'm afraid anyway. It seems like I was healthy until four months ago and now cancer diagnosis and treatment are killing my mental health and taking my peace of mind. I'm feeling as if my life no longer belong to me. One day I'm asked to decide to have chemo or not, another day is given to me a drug which seems to kill our life quality for ten years.
I'm feeling pretty depressed and think it's too early to be caused by Tamoxifen. I think it's more about to be scared of possible side effects, lost of life quality and uncertain future at all.
I'm wondering if someone else feels this way and has tips so share about how to improve the feeling.
Thanks ladies and have a lovely week,
Hi Helen, I'm happy your results are ok and that you're back to work! Nobody but you should be mad. It's irritating and even painful to have a cough for so long. I hope you get better soon and that you begin reconstruction as soon as possible, so you can forget everything about cancer once and for all.
Yes, my mum is still here, but my sister left last week and now we feel the house empty.We use to say that we are the three musketeers lol.
I saw my surgeon two weeks ago and he said my lymph node biopsy was negative.I'm so relieved!😃 But he said I didn't have 1mm of clear margin near to the skin, so maybe I'll need chemotherapy. So far I didn't get any date for my appointment with an oncologist neither a date to start radiotherapy.🙁 I hope my mum will still be here when I start any further treatment.☺️
I wish you a lovely Sunday and send many hugs.
Hi Carol - I got the results of my chest x-ray and it was all clear, thank goodness. I still have the awful cough, though, worse than ever - I am driving my husband mad. The doctor won't give me anti-biotics as he thinks its viral I think my immune system must be low so it's taking me longer to fight the virus. 😪
I've done a few days back at work - all going well. Tired, but thats to be expected I suppose.
I have an appointment with the consultant on Tuesday - hoping to get a date for the implant exchange.
How are you? Is your Mum still here?
Have you had your results and started radiotherapy?
First of all a big welcome to the forum and a big hug from me as you go through treatment and decision making. I was diagnosed in December 2016 and this site has been a huge source of support.
I have never heard of anyone being too old for implants. I am 51 and had an implant after a mx and node clearance, and some people have to have them replaced years later. Maybe someone else on here will have heard that advice or perhaps you can get a second opinion? If you do go for the implant option then I am happy to offer any advice, or indeed if you have any other questions I might be able to help with.
Love, Evie xx
I am new to the forum and have been dignosed with Invasive Lobular Cancer with cancer cells showing in nodes after biopsy but full extent not known yet. It is so inspiring to read the support given on the site. No one except a fellow sufferer understands how this illness feels and how frightening and traumatic the future seems.
My sureon has told me I will have an mx and as many as nodes as necessary removed during surgery. My surgeon has recommended immediate reconstruction although she said I was too old for implants - I am only 60 and reasonbly fit - it looks like I will be offered latisimus dorsi flap. I've read some horror stories about life after this type of reconstruction surgery and I am terrified . Has anyone undergone this procedure or does anyone have any advice on immediate reconstruction ?
thank you , best wishes to all, Susie
Hi - was interested to see some discussion on this thread about tissue expanders. I had a mastectomy in late October with a temporary tissue expander inserted. I didn't have regular inflations as I had a lot of swelling after the operation so had to go back to theatre for that to be sorted out and, because the swelling had already stretched the skin so much, the surgeon inflated the expander at that stage and then did one more fill in clinic a couple of weeks later. I've found the tissue expander a really difficult part of all this - it's been uncomfortable at best and really quite sore and painful at worst - and the numbness in my arm and armpit from my node clearance makes it all feel odder still. I'm having chemo now and then radiotherapy after that so won't have the surgery for the permanent implant for quite a while.
Like helenann, the consultation I had about whether to go flat or have the tissue expander happened in a bit of a blur. Not that I blame anyone for that - I would have probably still opted for the expander anyway - but it wasn't really explained to me how uncomfortable it was going to be (and it's really hard to make these decisions anyway when you've never really given them a moment's thought before you find yourself in the patient's chair!!!)
Hi Stargazer - the implant I have at the moment is a tissue expander. It has the capacity to be filled to 620ml, but at 525ml it looked about equal in size to my left breast so it was decided that was enough. I had 6 weekly visits to the hospital to get it to this size as they put 50mls each time I went. The implant i have at the moment is quite hard and it feels lumpy at the moment.You can actually see the 'port' sticking out under the skin that they use to inject the saline into it. It feels like it has a life of its own at time, I can feel it move. - It looks (and feels) a bit like I have a bowling ball implanted!!! - not one bit natural and there's puckering at the side(which is a bit worrying🙄) - but the consultant has said it will all get sorted when they do the replacement.
I had my last 'fill' in November and it then has to be left to 'settle down' and to make sure the skin is stretched enough for the silicone permanent one to be put in, so I'm due back on 5th Feb (which will be a gap of 3 months since my fianl fill) for the consultant to check it over and decide if it's ready to have the transfer to the new softer, silicone one (which I'm hoping will look and feel more natural).
I have to admit I don't remember being given any choices on which reconstruction I could have - but it was all a bit of a blur when I look back now. I'm pretty sure I was just 'told' this was what they were going to do for me and I went along with everything (I didn't know any different then and thought this was the only way - I realise now there are loads of different reconstruction techniques).
If you've got one that doesn't need replacing thats great - as the one I have obvioulsy means more surgey.😕.
I didn't have much of a problem with my arm, it felt 'tight' under my arm for a while - I had a drain in for about 10 days - made sure I did the excercises for my arm regulary.
Keep us informed of your progress.
Love, Helen. xxx
Hi Stargazer1 - I just want to jump in on this chat to hopefully reassure you about the arm swelling. My arm swelled a lot a few days after my mastectomy. I immediately panicked that it was lymphoedema but my surgeon also advised that it was a bit early for lymphoedema. My swelling gradually went down, thankfully, and I’m sure yours will too. I read something about gently clenching and unclenching fists to keep everything moving. All the best to you.
Hi Trixielady and Stargazer - thought i'd jump into this topic as I'm a bit further along than both of you with the tissue expander, so thought I'd share what I've found so far.
I had a right sided mastectomy with immediate reconstruction using a tissue expnader with ti-loop meash on 24th September.The tissue expander had 225cc volume filled in theatre -so I straight away had a bit of a breast shape. I then went weekly for 6 weeks and at each appointment had 50cc added. I now have a total of 525cc in it and this is the final total. I was a generous D cup before the operation.
I used to wear the front fastening bra's to begin with and my breasts looked very strange and uneven - the 'new' one very hard and a weird shape and my 'good' one looked very droopy compared to the new one.
I'm now back in my normal bra's and they look so much better in it - they look quite even in size when tucked into the bra (they still look weird when not been restrained in a bra).
I found having the weekly 'fill' was uncomfortable - nothing too bad, just achy for a couple of days.
I also had the phantom nipple itch for a while - but I don't get it now - so that should clear for you.
I sometimes feel like the expander has a life of its own - it seems to 'move' - especially when I cough. It looks odd, but I'm really hoping when it's exchanged for a softer permanant silicone one it will look (and feel) more normal.
I go back on 5th Feb when I'm hoping to get a date for surgery for the exchange.
If there's anything else you want to know about my tissus expander 'experince' let me know.
Love, Helen xxx
Good to 'hear' from you - Hope you had a great Christmas and New Year. It's great you have your family here for a while - how long are they here for?
I think it's bad that you haven't had your follow up appointment - it's such an anxious time and if you had a date it would be easier for you i'm sure - it would be even better if your family were still here to support you -whatever the outcome. If the BCN is not replying to e-mails do you have a phone number for your consultant's secretary - I'd be phoning them I think.
I had a good Christmas and New Year but I've developed a really bad cough which is getting worse each day. I ended up going to my doctor and he has sent me for a chest x-ray - which I had today. I just hope nothing 'bad' shows up on it now. I'm sure it's my mind going into overdrive and imagining every ache and pain is something serious.
I know what you mean about feeling 'weepy' - I did end up crying at the doctors yesterday - no idea why.
I'm hoping to go back to work the week after next on 14th Jan - thats the plan anyway - although I will have to have more time off to have the implant exchanged etc.
Take care and keep in touch
Hi Carol Lina
Happy New Year! It is so nice to read your post, and you sound so much happier. The family being with you must give you such a boost!
I went back to work on Wednesday, mornings only until my radiotherapy finishes on 10th January. I am not working today though.
I have had ten radiotherapy sessions and I have found them really easy. No tiredness or soreness. I can't wait to ring that bell. I still have to have Herceptin injections, three weekly, til June, but there have been no side-effects, so I will feel that next Thursday is really the end of treatment ( until my reconstruction !).
Good luck with the rest of your treatment
Love Jane xx
Thank you, I'm really pleased for you. i think its important that we hear the positive outcomes as well as the risks. I will continue to do my research, so thank you for the link. Problem with research is I have hundreds of questions now in my head (LOl)
Thank you all again. Cel
Touch wood the radiotherapy didn’t affect my implant - I don’t know if it can impact further down the line, I’m 18 months post surgery so hoping all is stable now. Google “pre pectoral implant with Braxon” if you would like more info on the implant I had.
It’s always tough weighing up the options especially when different surgeons are prepared to offer different options. All the best and I’m happy to answer any more questions any time.
Thank you for your reply. From my own research one of the issues with radiotherapy first is that some reconstruction surgeons are concerned with the quality of the skin post radiotherapy and this can reduce their options or what they can do afterwards - so this seem a risk also to me to wait post radiotherapy. I want to see both surgeons before i finalise my decision - if I'm given an option - and be able to have all the information to hand. its the only way i know personally that i will be comfortable with what i finally have to proceed with.
I do hope your reconstruction goes excellently - good luck and if you feel up to it keep me and other forum members posted?
Thank you that is really helpful, especially to know that your consultants were prepared to go with the immediate reconstruction. I may have to have an implant subject to another surgeon reviewing me this week about the autologous option - so yes it would be nice to hear how your radiotherapy has impacted - if at all. Please do let me know.
Whilst they tell you the risk - e.g. with implant approx 26-28% of capsulisation or other skin tightening issues , they don't say that this mean 72% of women were fine.
Welcome to the forum, where you will find lots of support and understanding. You may want to find the chats with ladies who didn’t have a reconstruction, as they will be able to answer all your questions. Try searching on here for an appropriate thread or call the helpline.
If you have concerns about the fluid do give your BCN a call as she will be able to reassure you. Itching around the sites is very normal, but again do speak to your BCN if anything at all is worrying you.
Big hugs to you
I wanted to wish you all the best for your operation on 2 Jan. Sorry to hear that you are going through it again. Your first post was very positive, but it’s totally understandable to have a wobble while in M&S. You will wear nice underwear again. You’ve already had lots of good info from other ladies, so I’ll just second what they have said. The drain bag was really useful - I got mine from Drain Dollies, but for anyone reading this who can’t get hold of one in time you can definitely make some sort of device yourself so that you can walk around and not worry about the drains. Also front opening clothes are a must, it took me a long time to be able to get clothes over my head and my arms in that way (I also had node clearance).
I’ve just read your post asking about immediate reconstruction and just want to offer my own experience. I had a mastectomy about 18 months ago with immediate recon using an implant. I then went on to have radiotherapy after that. I too was advised about the risks but I had a “pre pectoral” (on top of the muscles) implant held inside a Braxon mesh which I was told reduced the risks of radiotherapy damaging it. I think though that you would prefer a recon using your own tissue. I’m happy to answer any questions if you decide to go for an implant. All the very best to you for your operation and recovery, and deciding which option to go for.